I'm home. I got home early evening on Monday. I'm going to try to stay at home for longer than a week this time. So far the signs are good :o) I'm tired, and I get tired easily, but that's only to be expected given how poorly I've been and that I've spent the best part of six weeks in bed in hospital. Of course, being me, I've tried to jump straight back into life, albeit at a slightly slower pace.
After my cataract surgery my glasses prescription has changed quite significantly so that my current glasses are fairly useless. They're better than nothing, I suppose, but not terribly helpful, so the first thing I wanted to upon my escape from hospital was go to the optician for a sight test and to order new glasses. I went on Tuesday. While I was there I thought I'd ask the optician why the ophthalmologist had decided to make me short sighted in the left eye but keep me long sighted in the right eye - why not try to make my vision 20/20 (6/6)? The optician didn't know and couldn't explain. In fact, she seemed a little puzzled. She seemed even more puzzled that the ophthalmologist has not only made me short sighted in my left eye, but has made my overall vision worse with the lens implants he's put in. On the upside, as I no longer have natural lenses in my eyes then my glasses prescription is unlikely to change very much over the years, unless I develop fibrosis, which apparently is very likely because of the cataract surgery, although I was reassured that this is easily rectified with laser treatment. Anyway, I digress. Having had the sight test then began the awful process of having to choose new frames. I like having new glasses, but I hate the choosing of frames, partly because when you're trying the display frames on you can hardly see what it is you're trying on as they don't have prescription lenses in (of course!); partly because there's so much choice, yet often it's a case of finding what's nice amongst what I wouldn't be seen dead in; partly because whatever I choose is going to become part of my everyday appearance for at least the next year and probably longer; and partly because I'm often not very good at decision anyway. Dispensing opticians can be helpful in the decision making process, but they don't know you, and sometimes steer you towards frames they'd wear themselves rather than what you'd wear. Take the last time I was choosing glasses: I ended up having to gently ask if there was anyone else who could help me as the woman I had was 'suggesting' frames that were pink diamante things, which anyone who knows me will tell you is just not me - I don't 'do' pink, for starters - and most likely anyone who takes a minute to glance at me could probably tell as well. Thankfully, there were no such problems on this occasion, but it can be luck of the draw. So last time it took me two whole hours to choose frames! This time only an hour and a half ;o) I went for the two for one offer so that I can get one pair with reactor light lenses for driving, and also have two completely different styles to wear. The first pair I've chosen are these (in brown, not purple), and the second pair are these (in brown/green, not black/pink). Having bought them, I've now realised that one of my friends has the second pair in the black/pink combination, so that might be a bit odd, but I've warned her and we'll just have to live with it now. R, I'm not cloning you, honest ;oP I can't wait to get my new glasses because I soooo want to be able to see properly, and it won't be until I get the glasses that I'll realise the full benefit of the cataract surgery. I'm collecting them at 11.30 on Tuesday morning. The opticians can do single vision distance lenses in an hour, but I have varifocals, which take at least a week, usually ten days. I asked them if they could priorities my prescription given how useless my current glasses are to me, and they agreed to have them done by Tuesday - exactly a week :o)
The next thing I did was to test-drive a car! I have a motability car (no adaptations though), which means that I get a new car every three years. I can hardly believe that it'll be three years in January since I got my current car, but it will be so it's time to be looking for a new one and deciding if I want to stick with the same that I've had or go for a change. I've decided to go for a change. I've enjoyed the Nissan Note that I've got at the moment, but one thing that would be useful is a bigger boot as I can't actually fit my either wheelchair in the boot of this car. I can't afford a car that's big enough to take my electric wheelchair, but at the moment, even my manual/attendant assisted is having to go in the back behind the passenger seat.
I'm the kind of person who likes to do a lot of research into all the affordable possibilities before making a decision on a substantial purchase, often checking things out with Which? or their equivalent - in this case What Car? After a fair amount of deliberation and assessment of finances I decided that I'd like to have a closer look at the Vauxhall New Meriva so I booked a test-drive. I liked it. I liked it a lot. I ended up putting an order in. I've gone for the SE model 1.4litre 120bhp in Pepper Dust, with the 'sight and light' package (automatic lights and windscreen wipers). I'm also paying extra for a spare wheel because they don't come as standard (it comes with a tyre self-inflation kit instead) and after the tyre pop I had earlier this year I'm a little wary of not having a spare wheel. Those costs add up, but it's worth it. I won't get my new car until the end of January/beginning of February as that's when the lease on my current car runs out, but when the guy at the dealership looked at the computer he saw that there weren't actually any cars already built to my specifications so one is going to be built especially for me! How cool is that?! So now I have three months to get ridiculously excited about getting a new car, and I'll probably bore you silly with excitement between now and the end of January ;o)
Right-e-o, I'd better be off as W has just arrived and my step-mum is bringing my dad round imminently so that the three of us can go to a fireworks display at Segedunum. I like fireworks and didn't get to a display last year because I was in hospital, although W and I did our own display on the town moor earlier this year, which we'd postponed from last bonfire night. We had so much fun on the moor that we're actually going to do the same thing again, probably on 8th December after we've been to 'Wind in the Willows' at Northern Stage. It should be a fun day.
Showing posts with label cataracts. Show all posts
Showing posts with label cataracts. Show all posts
Friday, 5 November 2010
Thursday, 28 October 2010
Hospital Use Only
I didn't last long at home. One week exactly, that's all, and a strange week it was too. I went to a concert by Northern Sinfonia at the Sage Gateshead on the Saturday after I was discharged and picked up a cold from one of the many congested people in the audience. I could feel it scratching away in my throat by Sunday evening. By Monday I was beginning to cough and felt the bugs clawing their way south to my lungs. on the Tuesday I had to go and have bloods done at the GP surgery to rule out diabetes or thyroid problems as the cause of the neuropathy in my hands. I had a rubbish night on Tuesday with coughing, but nonetheless went to RVI on Wednesday morning for cataract surgery on my left eye. I expected them to turn me away because of my cold and cough, but the surgeon just said, 'Let me know before you're going to cough so I have time to pull the instruments away'!! I duly obliged - I didn't want to be his first accidental brain surgery patient, however good an eye surgeon he is. Fifteen minutes out of surgery and back on the day ward, with hardly time to feel relief that the operation was over, I had a call on my mobile from my GP. The blood tests I'd had the previous day showed I was 'dangerously hypernatraemic' with a sodium level of 152.
'Okay ... what do I do?'
'I don't know. We don't usually see levels this high. I'm going to call the hospital for advice. Are you feeling ill in any other way?'
'Um, yes, well it's hard to say because I'm full of cold and it's going to my chest so my breathing isn't that great, and I'm literally just out of cataract surgery.'
A moment's silence.
'Right. Okay. I'm going to phone the hospital and I'll call back soon.'
'... Okay ... is there anything I should do with my diet?'
'No, that won't make any difference.'
End of call. Anxiety sets in. I come to the conclusion that it's not a good sign when your GP phones you in a panic with no real idea of what to do.
She rang back five minutes later saying the hospital advise urgent repeat blood tests, and she'd made me an appointment for 4.30pm. so then I had to make sure I could leave the hospital to get to the GP surgery in time so had to tell the nurse on the day ward what was happening. That sent them into a bit of a spin, but also meant I got my eye drops prescription quickly and could leave. I'd texted my mum and step-dad (J) to tell them about the call from the doctor and then the appointment, and they came up to the hospital straight away. We went home and then a little under an hour later I was having my bloods redone. And then a bit of an anxious evening as I wondered what was going to happen.
...And then my cough changed to a really fruity rattle and rasp, and overnight the wheeze set in. It was a terrible night with very little sleep, and although I had an appointment booked with the GP for the following morning, I knew I wouldn't last that long so called the surgery, got an appointment for 10.10am that day (Thursday) and reluctantly checked and replenished supplies in my hospital suitcase. J drove me the four streets to the surgery and waited in the car.
The GP I saw has her room directly at the end of the corridor from the waiting room and she had her door open as I made my way towards her. She waved to me and gently said, 'Bad day?' I wheezed a yes, sat down and she closed the door behind me. She called the ambulance before she even got her stethoscope out, then stuck me on a nebuliser even though I'd just had one at home. I shed a few tears at her mention of hospital although I'd known it was coming. I just didn't have the mental or physical energy for this, and I hardly felt like I'd had any time free from hospital. She was gentle. She sympathised. There wasn't much more to be done. The rapid response paramedic came, closely followed by the ambulance crew. In the meantime I texted J to let him know what was happening, he phoned Mum then came into the surgery, and one of the other doctors - my usual - popped in to see what was happening and said, as if it were a normal occurrence (which it kind of is), 'Ah, you've got Becky G in here.' He gave me a gentle smile and left as the other GP came back in with a letter for the hospital and an update for the paramedics. We left the surgery and I was scooted off to A&E on blues and twos.
A&E was heaving. Mum said the waiting room was chock-a-block and people were lining the corridor on trolleys and chairs. I was in resus, where there were four beds but five patients - a RTC victim and another asthmatic having to take turns in the bed space next to me! Thirteen 5mg salbutamol nebs and several 500mcg ipratropium nebs later, and the starting of an aminophylline infusion, and I wasn't really any better, but after five hours I'd breached the four hour national treatment time target for A&E so was whisked off to the Emergency Assessment Unit (EAU) at RVI by two paramedics and a nurse escort.
EAU was heaving too, with a very disoriented and distressed old lady with dementia running around searching for someone called Maureen, and the nurses having to try to contain her when they were short-staffed to begin with. the doctors were busy too and really slow of the mark with me, so while the nurses were doing their best with the demented lady and seven other poorly patients in 'monitoring' (as well as other patients in the unit), they were also trying to keep a watchful eye on me and could see that I was deteriorating. They called ITU outreach to come and see me. Then the junior EAU doctor came to see me and he called the registrar, who came and put his stethoscope to my chest and immediately recoiled, exclaiming to no-one in particular, 'Oh dear.' He looked scared and didn't listen any more. The junior doctor called ITU. The nurse called the EAU consultant. The consultant said to call ITU again, get an urgent chest x-ray, and give me IV hydrocortisone. The nurse came and gave me half of the hydrocortisone injection then left, went to the nurses station where she promptly fell to the floor and had a fit! Another nurse gave me the rest of the injection and the ITU registrar came to assess me, immediately saying that I needed to go upstairs. My transfer to ITU was a little delayed by the nurse's fit, but not by too long, however it caused quite a stir as you may be able to imagine. As I was arriving on ITU the patient in the room next to mine was so disoriented through illness that they were getting aggressive, punched a nurse in the face and apparently broke her nose! The staff did well not to be too distracted, and I have to say that despite my previous negative experiences of RVI, this time ITU staff were very good and I had a very lovely nurse - Bonny - and a great student nurse - Kate - looking after me. I very narrowly missed being ventilated, but stayed in ITU for four days nonetheless before being shipped across the city again to Ward 29 at Freeman Hospital, where I am now. I was still pretty ill when I came here, the cold having turned into moraxella pneumonia, and then they also grew pseudomonas in my sputum. I've been and felt very ill and it's taken a heck of a long time to settle, needing to be on the aminophylline infusion for twelve days this time and only just feeling like I've really turned the corner yesterday. To be perfectly honest I wasn't convinced I was going to survive. in fact there was a point when I was in EAU when I suddenly became certain that I was going to get a little bit better before getting much worse and then die. It was an odd certainty, that clearly turned out to be wrong, but I think perhaps that certainty spurred me on to draw on every ounce of strength I could get from anything and everything. I texted friends and asked them to pray. They did. I survived. I feel lucky to be alive, very lucky. And I remember thinking, 'I'm damned if I'm going to die this close to getting my degree. I don't want the only letters after my name when I die to be R.I.P.'
And now I'm recovering. Still in hospital, but mending. However, it's been an awful time, and fast on the heels of my previous admission with a stressful, ill week between them, and I've felt very much like what is emblazoned on the hospital gowns I'm put in when I'm admitted and wear for several days until I can be bothered with my own pyjamas - 'Hospital Use Only.'
By the way, my sodium levels came back down to normal - high normal at 143, but normal - on their own. That's all a bit of a mystery, but it certainly caused some anxiety.
'Okay ... what do I do?'
'I don't know. We don't usually see levels this high. I'm going to call the hospital for advice. Are you feeling ill in any other way?'
'Um, yes, well it's hard to say because I'm full of cold and it's going to my chest so my breathing isn't that great, and I'm literally just out of cataract surgery.'
A moment's silence.
'Right. Okay. I'm going to phone the hospital and I'll call back soon.'
'... Okay ... is there anything I should do with my diet?'
'No, that won't make any difference.'
End of call. Anxiety sets in. I come to the conclusion that it's not a good sign when your GP phones you in a panic with no real idea of what to do.
She rang back five minutes later saying the hospital advise urgent repeat blood tests, and she'd made me an appointment for 4.30pm. so then I had to make sure I could leave the hospital to get to the GP surgery in time so had to tell the nurse on the day ward what was happening. That sent them into a bit of a spin, but also meant I got my eye drops prescription quickly and could leave. I'd texted my mum and step-dad (J) to tell them about the call from the doctor and then the appointment, and they came up to the hospital straight away. We went home and then a little under an hour later I was having my bloods redone. And then a bit of an anxious evening as I wondered what was going to happen.
...And then my cough changed to a really fruity rattle and rasp, and overnight the wheeze set in. It was a terrible night with very little sleep, and although I had an appointment booked with the GP for the following morning, I knew I wouldn't last that long so called the surgery, got an appointment for 10.10am that day (Thursday) and reluctantly checked and replenished supplies in my hospital suitcase. J drove me the four streets to the surgery and waited in the car.
The GP I saw has her room directly at the end of the corridor from the waiting room and she had her door open as I made my way towards her. She waved to me and gently said, 'Bad day?' I wheezed a yes, sat down and she closed the door behind me. She called the ambulance before she even got her stethoscope out, then stuck me on a nebuliser even though I'd just had one at home. I shed a few tears at her mention of hospital although I'd known it was coming. I just didn't have the mental or physical energy for this, and I hardly felt like I'd had any time free from hospital. She was gentle. She sympathised. There wasn't much more to be done. The rapid response paramedic came, closely followed by the ambulance crew. In the meantime I texted J to let him know what was happening, he phoned Mum then came into the surgery, and one of the other doctors - my usual - popped in to see what was happening and said, as if it were a normal occurrence (which it kind of is), 'Ah, you've got Becky G in here.' He gave me a gentle smile and left as the other GP came back in with a letter for the hospital and an update for the paramedics. We left the surgery and I was scooted off to A&E on blues and twos.
A&E was heaving. Mum said the waiting room was chock-a-block and people were lining the corridor on trolleys and chairs. I was in resus, where there were four beds but five patients - a RTC victim and another asthmatic having to take turns in the bed space next to me! Thirteen 5mg salbutamol nebs and several 500mcg ipratropium nebs later, and the starting of an aminophylline infusion, and I wasn't really any better, but after five hours I'd breached the four hour national treatment time target for A&E so was whisked off to the Emergency Assessment Unit (EAU) at RVI by two paramedics and a nurse escort.
EAU was heaving too, with a very disoriented and distressed old lady with dementia running around searching for someone called Maureen, and the nurses having to try to contain her when they were short-staffed to begin with. the doctors were busy too and really slow of the mark with me, so while the nurses were doing their best with the demented lady and seven other poorly patients in 'monitoring' (as well as other patients in the unit), they were also trying to keep a watchful eye on me and could see that I was deteriorating. They called ITU outreach to come and see me. Then the junior EAU doctor came to see me and he called the registrar, who came and put his stethoscope to my chest and immediately recoiled, exclaiming to no-one in particular, 'Oh dear.' He looked scared and didn't listen any more. The junior doctor called ITU. The nurse called the EAU consultant. The consultant said to call ITU again, get an urgent chest x-ray, and give me IV hydrocortisone. The nurse came and gave me half of the hydrocortisone injection then left, went to the nurses station where she promptly fell to the floor and had a fit! Another nurse gave me the rest of the injection and the ITU registrar came to assess me, immediately saying that I needed to go upstairs. My transfer to ITU was a little delayed by the nurse's fit, but not by too long, however it caused quite a stir as you may be able to imagine. As I was arriving on ITU the patient in the room next to mine was so disoriented through illness that they were getting aggressive, punched a nurse in the face and apparently broke her nose! The staff did well not to be too distracted, and I have to say that despite my previous negative experiences of RVI, this time ITU staff were very good and I had a very lovely nurse - Bonny - and a great student nurse - Kate - looking after me. I very narrowly missed being ventilated, but stayed in ITU for four days nonetheless before being shipped across the city again to Ward 29 at Freeman Hospital, where I am now. I was still pretty ill when I came here, the cold having turned into moraxella pneumonia, and then they also grew pseudomonas in my sputum. I've been and felt very ill and it's taken a heck of a long time to settle, needing to be on the aminophylline infusion for twelve days this time and only just feeling like I've really turned the corner yesterday. To be perfectly honest I wasn't convinced I was going to survive. in fact there was a point when I was in EAU when I suddenly became certain that I was going to get a little bit better before getting much worse and then die. It was an odd certainty, that clearly turned out to be wrong, but I think perhaps that certainty spurred me on to draw on every ounce of strength I could get from anything and everything. I texted friends and asked them to pray. They did. I survived. I feel lucky to be alive, very lucky. And I remember thinking, 'I'm damned if I'm going to die this close to getting my degree. I don't want the only letters after my name when I die to be R.I.P.'
And now I'm recovering. Still in hospital, but mending. However, it's been an awful time, and fast on the heels of my previous admission with a stressful, ill week between them, and I've felt very much like what is emblazoned on the hospital gowns I'm put in when I'm admitted and wear for several days until I can be bothered with my own pyjamas - 'Hospital Use Only.'
By the way, my sodium levels came back down to normal - high normal at 143, but normal - on their own. That's all a bit of a mystery, but it certainly caused some anxiety.
Tuesday, 24 August 2010
Pausing for breath
Last week was a bit manic and mainly with health related appointments. Monday's was with the disabilities advisor at Newcastle University's Student Welfare, during which we went through what needs I may have while I'm studying with them. It was very useful, but obviously concentrated on how decrepit I am so I came out feeling a bit pleugh, although I did also feel positive about how they're going to manage things. One of the most ridiculous things the DA is having to sort out is for staff to get permission to use my Epi-Pen on me if the need should arise. At the moment they're not allowed to in case I sue them for assault! Crackers! The DA is going to speak to Occupational Health and also the Health and Safety Officer, who apparently is the only person currently allowed to use my Epi-Pen on me, but that's no good if he's not immediately around because if I need someone else to administer the adrenaline then I need it there and then. Various other things are going to be put in place too, including a note-taker to attend my lectures when I'm in hospital. Brill. There'll likely be bits of equipment I'll be getting too, either through the university or through the Disabled Students Allowance, which I've eventually got around to applying for after all these years of study.
Tuesday's appointment was relatively brief and was with the optician. I'd been told after my cataract operation that I had to go to my regular optician for a sight test and check-up two days before my check-up with the ophthalmologist. It seems a bit daft to me seeing as they do a basic sight test at the ophthalmology department when you go for your appointment, but I was good and went to the optician. The verdict is that my general sight in my right eye has improved a little since the cataract was removed, but my reading sight is a little worse. I could've told them that myself ;o) I have to go back for another sight test and new glasses after my second op.
My psychiatrist was supposed to come on Wednesday morning - 8.30. Ug - but twenty minutes after she was due here she rang me to say that the centre had been crazy all week so she'd had to go straight there. Somewhat ironic that she should describe a mental health centre as 'crazy' ;oP It made me smile anyway. After apologising for not being able to make it she said, 'I have a confession to make,' which made me a little nervous until she continued, 'I was watching telly the other day and I saw you. I shouted, "That's Becky! That's Becky!"' Tee hee :o) After that we had a relatively short telephone consultation, which went okay and was really just a quick monitoring and my conveyance of a self-assessment of how I am. I'm doing okay emotionally - certainly better than the last time I saw her :o)
On Wednesday afternoon I had an appointment with the physio at Freeman Hospital - a pre-pulmonary rehab assessment. This mainly consisted of going through a questionnaire I'd had to fill in before the appointment and going through another questionnaire the physio had there that concentrated on exercise tolerance, perception of health, and my goals for the pulmonary rehab. We obviously also discussed their concerns about my passing out and how they/I will manage them during rehab. Then I had to do a 6 minute walk test to see what happened to my oxygen saturations and my pulse rate. Predictably, my O2 dropped (but only a little) and my pulse rate went up, and of course I staggered around a fair bit, frequently using the wall for support, as walking in a straight line for anything more than a few steps (and sometimes not even that much) doesn't happen with me these days. The verdict is that I'm decrepit enough to warrant being on pulmonary rehab and not so awfully decrepit (at this moment in time) that I'm excluded from taking part :oD I start on Thursday next week.
Most of Thursday afternoon was taken up with the ophthalmology appointment I mentioned before. I was running a little late through the day after a bit of a rubbish night and I was worried that I might be late for my appointment, but honestly it's their time-keeping that needs putting in check, not mine. Like last time, I was there for three hours! Three hours! Three hours for a five minute sight set and a five minute consult with the doctor. At least I got a date for my second cataract removal op - 13th October. I was hoping that I'd get something before that, but as it's the consultant doing the op that's the earliest they had, but said they'd give me a call if they got a cancellation.
Friday morning was taken up with a 'Continuing Care' assessment by Social Services, which took about an hour and a half and again meant concentrating on how utterly rubbish my health is. The point of it is to assess my level of care needs that are medical based, rather than socially based, and therefore how much, if any, the Primary Care Trust (PCT) will pay towards it. To be honest I'm not completely sure how this may effect me. I mean, I don't know if it effects how much I have to pay towards my care or if it's purely to see if I pay the PCT or Social Services ... or some other variation of this. All I really know is that it's something to do with payment, and that going through the assessment made me feel pretty lousy about my health and general state of well-being :o( And to top off the day (and the week) I had a dentist appointment. It was just a check-up, but going to the dentist is never fun. I haven't actually been to the dentist since June last year when he accidentally instigated anaphylaxis by smearing something with a tiny amount of banana derivative in it on my teeth. As soon as the dentist saw me in the waiting room he came and sat beside me and said he was about to go into the room and clean everything thoroughly before I went in and he wasn't going to wear latex gloves, even though I'm not (yet) allergic to latex. When I went in he said, 'I'll have a look, but I'll probably just need to do a scale and polish and I'll get the hygienist to do that.' I got the impression he was slightly nervous ;oP He must have spent all of about a minute looking at my teeth before saying that he was right - a scale and polish with the hygienist is all that's needed. I wonder if the dentist will warn the hygienist that I'm a terrifying patient to have in the practice ;oP He certainly couldn't get me out of there fast enough.
So that was last week, during which time my lungs have been slipping and I'm not sure how long I'm going to last. I've been taking things easy the past few days, trying to beat the old breathing bags into submission with rather a lot of salbutamol and prednisolone. I think I'm much the same today as I was yesterday, and I need to keep on a level as I'm going up to Edinburgh later in the week. I was supposed to be going up there tomorrow, but yesterday I had a phone call from Dr G's secretary giving me an appointment for a pre-portacath consultation on Thursday afternoon. This is good news. I've been waiting for this for what feels like ages. Dr G is going on holiday for two weeks after this, but his secretary said that he's trying to organise a date for theatre for when he gets back. Maybe I'll get a date for the operation when I see him on Thursday. I'm sure it'll give me a lot to think about on the drive north immediately after the appointment.
I'm sincerely hoping that I'm going to be okay while I'm in Edinburgh - breathing wise, I mean - but things are really quite iffy at the moment. I can manage if I stay still, but breathing and walking is something of a challenge. I've got an appointment with Dr H (asthma consultant) on Thursday next week so we'll see what he has to say, and how I am, but at the moment I'm very unimpressed with the state of things ... and I'm not excluding the possibility that I'll end up in hospital while I'm in Edinburgh :o( I hope not. I really do. I'll keep you informed.
Tuesday's appointment was relatively brief and was with the optician. I'd been told after my cataract operation that I had to go to my regular optician for a sight test and check-up two days before my check-up with the ophthalmologist. It seems a bit daft to me seeing as they do a basic sight test at the ophthalmology department when you go for your appointment, but I was good and went to the optician. The verdict is that my general sight in my right eye has improved a little since the cataract was removed, but my reading sight is a little worse. I could've told them that myself ;o) I have to go back for another sight test and new glasses after my second op.
My psychiatrist was supposed to come on Wednesday morning - 8.30. Ug - but twenty minutes after she was due here she rang me to say that the centre had been crazy all week so she'd had to go straight there. Somewhat ironic that she should describe a mental health centre as 'crazy' ;oP It made me smile anyway. After apologising for not being able to make it she said, 'I have a confession to make,' which made me a little nervous until she continued, 'I was watching telly the other day and I saw you. I shouted, "That's Becky! That's Becky!"' Tee hee :o) After that we had a relatively short telephone consultation, which went okay and was really just a quick monitoring and my conveyance of a self-assessment of how I am. I'm doing okay emotionally - certainly better than the last time I saw her :o)
On Wednesday afternoon I had an appointment with the physio at Freeman Hospital - a pre-pulmonary rehab assessment. This mainly consisted of going through a questionnaire I'd had to fill in before the appointment and going through another questionnaire the physio had there that concentrated on exercise tolerance, perception of health, and my goals for the pulmonary rehab. We obviously also discussed their concerns about my passing out and how they/I will manage them during rehab. Then I had to do a 6 minute walk test to see what happened to my oxygen saturations and my pulse rate. Predictably, my O2 dropped (but only a little) and my pulse rate went up, and of course I staggered around a fair bit, frequently using the wall for support, as walking in a straight line for anything more than a few steps (and sometimes not even that much) doesn't happen with me these days. The verdict is that I'm decrepit enough to warrant being on pulmonary rehab and not so awfully decrepit (at this moment in time) that I'm excluded from taking part :oD I start on Thursday next week.
Most of Thursday afternoon was taken up with the ophthalmology appointment I mentioned before. I was running a little late through the day after a bit of a rubbish night and I was worried that I might be late for my appointment, but honestly it's their time-keeping that needs putting in check, not mine. Like last time, I was there for three hours! Three hours! Three hours for a five minute sight set and a five minute consult with the doctor. At least I got a date for my second cataract removal op - 13th October. I was hoping that I'd get something before that, but as it's the consultant doing the op that's the earliest they had, but said they'd give me a call if they got a cancellation.
Friday morning was taken up with a 'Continuing Care' assessment by Social Services, which took about an hour and a half and again meant concentrating on how utterly rubbish my health is. The point of it is to assess my level of care needs that are medical based, rather than socially based, and therefore how much, if any, the Primary Care Trust (PCT) will pay towards it. To be honest I'm not completely sure how this may effect me. I mean, I don't know if it effects how much I have to pay towards my care or if it's purely to see if I pay the PCT or Social Services ... or some other variation of this. All I really know is that it's something to do with payment, and that going through the assessment made me feel pretty lousy about my health and general state of well-being :o( And to top off the day (and the week) I had a dentist appointment. It was just a check-up, but going to the dentist is never fun. I haven't actually been to the dentist since June last year when he accidentally instigated anaphylaxis by smearing something with a tiny amount of banana derivative in it on my teeth. As soon as the dentist saw me in the waiting room he came and sat beside me and said he was about to go into the room and clean everything thoroughly before I went in and he wasn't going to wear latex gloves, even though I'm not (yet) allergic to latex. When I went in he said, 'I'll have a look, but I'll probably just need to do a scale and polish and I'll get the hygienist to do that.' I got the impression he was slightly nervous ;oP He must have spent all of about a minute looking at my teeth before saying that he was right - a scale and polish with the hygienist is all that's needed. I wonder if the dentist will warn the hygienist that I'm a terrifying patient to have in the practice ;oP He certainly couldn't get me out of there fast enough.
So that was last week, during which time my lungs have been slipping and I'm not sure how long I'm going to last. I've been taking things easy the past few days, trying to beat the old breathing bags into submission with rather a lot of salbutamol and prednisolone. I think I'm much the same today as I was yesterday, and I need to keep on a level as I'm going up to Edinburgh later in the week. I was supposed to be going up there tomorrow, but yesterday I had a phone call from Dr G's secretary giving me an appointment for a pre-portacath consultation on Thursday afternoon. This is good news. I've been waiting for this for what feels like ages. Dr G is going on holiday for two weeks after this, but his secretary said that he's trying to organise a date for theatre for when he gets back. Maybe I'll get a date for the operation when I see him on Thursday. I'm sure it'll give me a lot to think about on the drive north immediately after the appointment.
I'm sincerely hoping that I'm going to be okay while I'm in Edinburgh - breathing wise, I mean - but things are really quite iffy at the moment. I can manage if I stay still, but breathing and walking is something of a challenge. I've got an appointment with Dr H (asthma consultant) on Thursday next week so we'll see what he has to say, and how I am, but at the moment I'm very unimpressed with the state of things ... and I'm not excluding the possibility that I'll end up in hospital while I'm in Edinburgh :o( I hope not. I really do. I'll keep you informed.
Wednesday, 11 August 2010
Results!
Hurrah! I have good things to report! First off, I got the results for my latest OU course - children's literature - and I got a Distinction (a First) with 90% for the End of Course Assessment (the one I wrote when I was so desperately ill because I was refused an extension) and 86.5% for the continuous assessment. All but one of my continuous assessment essays were over 85%, but my OCA mark was brought down a little by the 78% I got for the second assignment Sooo, the Distinction I've got for this course adds to the other three I've got, and although I have one more course to do before I graduate I know now that I will come out with a First Class Honours degree, providing I pass the last course. As I'm doing things in my typical backwards way, this last course I have to do is only a foundation course so it's just pass or fail - no variation in pass levels - and as a foundation course it doesn't count towards my final class of degree, which is how come I know what degree classification I'll graduate with :oD It certainly takes the pressure off, and I can be extremely proud of myself achieving what I have, and against the odds with my health.
Continuing with the education theme, I've had my official acceptance from Newcastle University onto the Post Graduate Certificate in creative writing - an unconditional offer after a glowing reference from my latest OU tutor :oD I'm a very happy bunny and looking forward to starting my post grad studies ... even though I'll simultaneously be finishing my undergraduate degree...
Now you may remember that some time ago I asked if it'd be possible for me to have pulmonary rehab at the Freeman. Initially the physio had agreed, but then they got scared off by my regular passing out, which is understandable I suppose. So then, feeling rather despondent, I asked my GP if he could help, but he was then pushed from pillar to post and apparently ended up writing to Dr H (asthma consultant) to see what he could do. Then at the beginning of last week I had an appointment with the physio at the Falls and Syncope Service at RVI to see if they could help with the imbalance I have due to the POTS. The physio here, L, was great (as all the staff at the F&S clinic have been in all of my contact with them) and she's given me some balance exercises to do. Anyway, while I was there I spoke to L about the pulmonary rehab and the reticence of physios not used to POTS (fair enough considering the rarity of it) to take me on, and also whether she thought it'd be reasonable for me to take part in pulmonary rehab. After my assessment with her L thought pulmonary rehab would be great for me, and said that she'd discuss it with Prof N (one of my POTS consultants - for some reason I have 2 in the same department!). The next day I had a call from L saying that she'd discussed the pulmonary rehab option with Prof N and she also thought it would be of great benefit to me. Prof N had written a letter to the physios at Freeman to put forward my case, whilst acknowledging the justification for their anxieties, and L said that I should hear from the Freeman shortly, but to get back in touch with her if I hadn't heard anything in three weeks time. Well, that afternoon I received a phone call from the physio at the Freeman offering me an appointment for my pre-pulmonary rehab assessment! L must have faxed the letter through to Freeman. I'm so pleased. I can't wait to start getting some level of fitness back, and to get my confidence with it back too. I'll keep you posted with how the assessment goes and what happens in pulmonary rehab.
It's three weeks today since I had my first cataract op, and things are now much more settled with it. I'm still surprised by the brightness of colours and the fact that things have actual edges! My sight is still lopsided as I've yet to have the second eye done, and also get new glasses, but already things are so much better than before the op and it's all very exciting :oD I have one more lot of eye drops to do at midnight tonight before I can stop being ruled by the clock and having to remember to take the drops with me if I go out (ensuring too that they're kept cold as they're supposed to be refrigerated), and then I have my follow-up appointment at the hospital on Thursday next week. Two days before this I have to go to the optician to have a post-op eye test so that the surgeon has something to work on at my clinic appointment, so that's all booked in for Tuesday. I'm still having problems reading and doing any kind of close work, which is very frustrating, but I know that'll be sorted when I get new glasses after my second op. In the meantime I'm enjoying already improved sight.
Oh, the other thing is that I've had the super duper ventilation system from EnviroVent installed. The bulk of the work was done on Monday with the BBC news reporter here too doing lots of filming and interviewing in the morning - he was here for almost three hours! He came back a couple of hours later to do a bit more filming and to interview one of the directors from EnviroVent who had come up from their head office in Harrogate. He was lovely, and actually the person who had seen me on the initial news item a few weeks ago, and thus instigated the whole thing with EnviroVent. It's so very generous of them, and while only time will tell if it helps my asthma, I can already feel an improvement in the level of humidity in my flat. The installation was finished off this afternoon, with the last of the boxing-in of the piping being done and the new fan in the kitchen. The engineer was brilliant, friendly, efficient, hard working, and an all round good guy :o) Both of us were on the telly on Monday evening on both the 6.30pm programme and the 10.30pm programme, and I learnt from a friend today who had a visit from her social worker yesterday that, as a result of my appearance on the telly, the local social services are going to review their provision of services for severe asthmatics. Apparently they weren't really aware of the impact that severe asthma can have on an individual, learnt a lot from the news report I was in, and consequently think that they're not doing enough for people with asthma. I think this is an amazing result and more than I could have hoped for from the report, so I'm now more than ecstatic that I agreed to put my insecurities aside and take part in the TV publicity.
Results all round!
Continuing with the education theme, I've had my official acceptance from Newcastle University onto the Post Graduate Certificate in creative writing - an unconditional offer after a glowing reference from my latest OU tutor :oD I'm a very happy bunny and looking forward to starting my post grad studies ... even though I'll simultaneously be finishing my undergraduate degree...
Now you may remember that some time ago I asked if it'd be possible for me to have pulmonary rehab at the Freeman. Initially the physio had agreed, but then they got scared off by my regular passing out, which is understandable I suppose. So then, feeling rather despondent, I asked my GP if he could help, but he was then pushed from pillar to post and apparently ended up writing to Dr H (asthma consultant) to see what he could do. Then at the beginning of last week I had an appointment with the physio at the Falls and Syncope Service at RVI to see if they could help with the imbalance I have due to the POTS. The physio here, L, was great (as all the staff at the F&S clinic have been in all of my contact with them) and she's given me some balance exercises to do. Anyway, while I was there I spoke to L about the pulmonary rehab and the reticence of physios not used to POTS (fair enough considering the rarity of it) to take me on, and also whether she thought it'd be reasonable for me to take part in pulmonary rehab. After my assessment with her L thought pulmonary rehab would be great for me, and said that she'd discuss it with Prof N (one of my POTS consultants - for some reason I have 2 in the same department!). The next day I had a call from L saying that she'd discussed the pulmonary rehab option with Prof N and she also thought it would be of great benefit to me. Prof N had written a letter to the physios at Freeman to put forward my case, whilst acknowledging the justification for their anxieties, and L said that I should hear from the Freeman shortly, but to get back in touch with her if I hadn't heard anything in three weeks time. Well, that afternoon I received a phone call from the physio at the Freeman offering me an appointment for my pre-pulmonary rehab assessment! L must have faxed the letter through to Freeman. I'm so pleased. I can't wait to start getting some level of fitness back, and to get my confidence with it back too. I'll keep you posted with how the assessment goes and what happens in pulmonary rehab.
It's three weeks today since I had my first cataract op, and things are now much more settled with it. I'm still surprised by the brightness of colours and the fact that things have actual edges! My sight is still lopsided as I've yet to have the second eye done, and also get new glasses, but already things are so much better than before the op and it's all very exciting :oD I have one more lot of eye drops to do at midnight tonight before I can stop being ruled by the clock and having to remember to take the drops with me if I go out (ensuring too that they're kept cold as they're supposed to be refrigerated), and then I have my follow-up appointment at the hospital on Thursday next week. Two days before this I have to go to the optician to have a post-op eye test so that the surgeon has something to work on at my clinic appointment, so that's all booked in for Tuesday. I'm still having problems reading and doing any kind of close work, which is very frustrating, but I know that'll be sorted when I get new glasses after my second op. In the meantime I'm enjoying already improved sight.
Oh, the other thing is that I've had the super duper ventilation system from EnviroVent installed. The bulk of the work was done on Monday with the BBC news reporter here too doing lots of filming and interviewing in the morning - he was here for almost three hours! He came back a couple of hours later to do a bit more filming and to interview one of the directors from EnviroVent who had come up from their head office in Harrogate. He was lovely, and actually the person who had seen me on the initial news item a few weeks ago, and thus instigated the whole thing with EnviroVent. It's so very generous of them, and while only time will tell if it helps my asthma, I can already feel an improvement in the level of humidity in my flat. The installation was finished off this afternoon, with the last of the boxing-in of the piping being done and the new fan in the kitchen. The engineer was brilliant, friendly, efficient, hard working, and an all round good guy :o) Both of us were on the telly on Monday evening on both the 6.30pm programme and the 10.30pm programme, and I learnt from a friend today who had a visit from her social worker yesterday that, as a result of my appearance on the telly, the local social services are going to review their provision of services for severe asthmatics. Apparently they weren't really aware of the impact that severe asthma can have on an individual, learnt a lot from the news report I was in, and consequently think that they're not doing enough for people with asthma. I think this is an amazing result and more than I could have hoped for from the report, so I'm now more than ecstatic that I agreed to put my insecurities aside and take part in the TV publicity.
Results all round!
Wednesday, 28 July 2010
I spy with my little eye
It's a week since I had my first cataract op and I'm doing okay :o) I had to be at the hospital for 8.30am and was told that I was near the beginning of the list, and then they suddenly realised that I'm MRSA positive (it's been in my notes all along so I don't know why they only just realised) so they moved me to the next door ward, put me in a cubicle, and moved me to the end of the surgery list :o( Consequently I didn't go into theatre until 11.50am. I was in for about half an hour, was taken back down to the ward, told I'd be able to go after 1 to 2 hours so long as my prescription was up. My prescription got lost and I didn't leave the hospital until gone 4.30pm. It was a loooooong day.
So how was it? Um ... okay I guess. It started with some kind of test done on the ward where the nurse numbed my eyes and then put a sensor wotnotthingumyjig (that's technical terminology) onto my eye ball that supposedly detects the strength of implant lens that the surgeon should put in once he's removed the lens with the cataract. It was odd being poked in the eye and not feeling anything, though I have no complaints that I couldn't feel anything! Then the nurse took my glasses away for another check on the implant lens that would be needed (I don't know why they needed to this and the 'poking me in the eye with a sensor wotnotthingumyjig' test), and while they were having whatever check was being done she brought a sample implant lens for me to see. The slight problem was that without my glasses, and with my pupil dilated, I couldn't see a sodding thing. Add to this the fact that the lens was supposedly tiny, transparent and floating somewhere in some clear liquid, the chances of me seeing it were slim to start with. After several times of the nurse trying to point it out to me, and my explaining that I couldn't see it without my glasses, I gave up, lied, and said, 'Oh yes, there it is. It is tiny, isn't it? Amazing.' The nurse seemed satisfied, and she went and got my glasses.
The op itself was weird. By the time I'd done all the waiting around to go up to theatre I thought I was more bored than nervous, but the surgeon had to remind me to breathe at one point. LOL I guess I'm so used to not breathing so well that when I get nervous and hold my breath I don't notice, but once the surgeon asked me to 'take some deep breaths and then just breathe normally,' I heard the beep of the oxygen saturation sensor was down in the lower range of things, but gradually rising as I took some breaths. I don't know what my sats went down to, but they had a little way to come up. I was fine though, and it wasn't anything to do with my asthma; just nerves.
So anyway, the op. It started with a sticky thing being put on my eye to keep my lashes out of the way and a brace being put in it to keep it open. Then a variety of drops were put into my eye, which made me jump every time they went in, although aside from a slight sting from one of them they didn't hurt. At first I could see all the things coming at me, despite the almost blinding theatre lights, but as more of the drops and then I think an injection were put in everything went misty, and then completely white. I thought about what my dad would say and knew he'd say it was interesting, so I concentrated on that thought, took it as my mantra for the whole op, and was thankful that my total blindness was only temporary. Apart from the white I could see the odd shapes that the theatre lights were now making - something akin to butterfly shapes, but with kind of holes in them - and vague, shadowy shapes of things near/in my eye. I could feel pressure at times, but there wasn't any pain, for which I am immensly thankful! And then the surgeon got the hoover out. That's not actually what it's called, but it's basically what it is. There was a lot of swirling in my eye, which I could see and that was very odd, and a weird 'sort of sensation' that I can't really describe, a lot of water dribbling down the side of my face, and a slightly disconcerting sucking sound. After the eye hoovering the synthetic lens was implanted, which I'm told is slipped in folded up and unfolded once it's inside the eye. How amazing is that?! It was another of those 'sort of sensation' moments, but fine. All done, patched up, and doing a fine impersonation of a pirate I was then ready to be taken back to the ward, where I had a lot of frustrated attempts at using my Nintendo DS, but without actually being able to see what I was doing. I had my glasses, but I couldn't get them on with the big patch and eye guard on my right eye bo) As the anaesthetic wore off my eye got very stingy, but I wasn't offered any pain killers so I waited until I got home. The patch had to stay on for the rest of the day and that night, but I could take it off the next day, and I now only have to wear the guard at night for the next week (having already worn it at night for a week), just to make sure that I don't rub it in the night. Mornings seem to be worse for swelling and bruising, but there hasn't been toooooo much of either. At first there was a lot of black and white flickering and it kind of looked like water was boiling in my eye, but that was just everything settling down. I'm still getting some flickering in the mornings, but mostly it's settling well bo)
I have to wait until I've had the left eye done before I can get a new prescription for my glasses - should be about 6 weeks till the second op, but no date yet - so it'll be a while till I get the full benefit of all this, but already I can tell a difference. For starters, I have the central vision back in my right eye! That's amazing! Everything's brighter. Colours are so vivid and vibrant! I hadn't notice how dulled colours had become, probably because the colour was leeched out of my world slowly as the cataracts developed, but now half the world is alive in a romp of colour again bo) And even though I'm yet to have my glasses prescription sorted, things already have more defined edges. The world is made of crystal, not frosted glass! Mind you, now that my right eye is done (the worst of the two) I see how bad the left eye is and I can hardly wait until both eyes are cataract-free and my glasses sorted. At the moment the world's a bit lopsided, but it's already a lot better than it was.
One of the temporary downsides is that I'm not allowed to drive for three weeks from the op - so I have another two weeks to go - and I'm feeling rather cooped up. Until both eyes are done then it seems that I won't be able to read or do any close work bo( I'm getting bored. I want to be doing cross-stitch and reading the novel I started shortly before the op, and I also have some reading to do in preparation for my next OU course. I've ordered some magnifying sheets from an online company but they haven't arrived yet. I'm okay using the computer as I can enlarge the text on the screen, but doing anything else much is proving very difficult and frustrating. The other thing is that I'm not allowed to get water in my eye for two weeks after the op, which isn't generally a problem except for when it comes to washing my hair. I don't have a shower, just a shower hose that attaches to the bath taps, but I can't easily use that backwards. My mum and step-dad stayed with me and looked after me from the day before the op until Sunday (and a marvellous job they did too!), so Mum helped me to wash my hair (leaning backwards over the side of the bath. That is, I was leaning backwards over the side of the bath, not Mum!) while she was here. Since Sunday though I've been to the hair dressers for a wash and blow dry, and have booked in for three more between now and next Wednesday, when I should be okay to do my hair myself again. I have to say that I was surprised at how expensive it is just to have a wash and blow dry (£13), so I'm just thinking of it as post-operative pampering ... or at least trying to.
All in all, it went okay. I was nervous, and it's not an experience I'd suggest putting on your 'Things To Do When Bored' list, but it's going to be fab when I've had both eyes done ... and when I don't have to put eye drops in four times a day ... or take other anitbiotics three times a day for the chest infection that I've managed to pick up along the way. Yes, another one! Still, on the bright side (that'll be the right side, now that the cataract from that eye is gone ;oP ), the driving restriction from the eye op is making me rest up, sofa surf and generally take things easy so my lungs might have more chance of clearing the infection.
So how was it? Um ... okay I guess. It started with some kind of test done on the ward where the nurse numbed my eyes and then put a sensor wotnotthingumyjig (that's technical terminology) onto my eye ball that supposedly detects the strength of implant lens that the surgeon should put in once he's removed the lens with the cataract. It was odd being poked in the eye and not feeling anything, though I have no complaints that I couldn't feel anything! Then the nurse took my glasses away for another check on the implant lens that would be needed (I don't know why they needed to this and the 'poking me in the eye with a sensor wotnotthingumyjig' test), and while they were having whatever check was being done she brought a sample implant lens for me to see. The slight problem was that without my glasses, and with my pupil dilated, I couldn't see a sodding thing. Add to this the fact that the lens was supposedly tiny, transparent and floating somewhere in some clear liquid, the chances of me seeing it were slim to start with. After several times of the nurse trying to point it out to me, and my explaining that I couldn't see it without my glasses, I gave up, lied, and said, 'Oh yes, there it is. It is tiny, isn't it? Amazing.' The nurse seemed satisfied, and she went and got my glasses.
The op itself was weird. By the time I'd done all the waiting around to go up to theatre I thought I was more bored than nervous, but the surgeon had to remind me to breathe at one point. LOL I guess I'm so used to not breathing so well that when I get nervous and hold my breath I don't notice, but once the surgeon asked me to 'take some deep breaths and then just breathe normally,' I heard the beep of the oxygen saturation sensor was down in the lower range of things, but gradually rising as I took some breaths. I don't know what my sats went down to, but they had a little way to come up. I was fine though, and it wasn't anything to do with my asthma; just nerves.
So anyway, the op. It started with a sticky thing being put on my eye to keep my lashes out of the way and a brace being put in it to keep it open. Then a variety of drops were put into my eye, which made me jump every time they went in, although aside from a slight sting from one of them they didn't hurt. At first I could see all the things coming at me, despite the almost blinding theatre lights, but as more of the drops and then I think an injection were put in everything went misty, and then completely white. I thought about what my dad would say and knew he'd say it was interesting, so I concentrated on that thought, took it as my mantra for the whole op, and was thankful that my total blindness was only temporary. Apart from the white I could see the odd shapes that the theatre lights were now making - something akin to butterfly shapes, but with kind of holes in them - and vague, shadowy shapes of things near/in my eye. I could feel pressure at times, but there wasn't any pain, for which I am immensly thankful! And then the surgeon got the hoover out. That's not actually what it's called, but it's basically what it is. There was a lot of swirling in my eye, which I could see and that was very odd, and a weird 'sort of sensation' that I can't really describe, a lot of water dribbling down the side of my face, and a slightly disconcerting sucking sound. After the eye hoovering the synthetic lens was implanted, which I'm told is slipped in folded up and unfolded once it's inside the eye. How amazing is that?! It was another of those 'sort of sensation' moments, but fine. All done, patched up, and doing a fine impersonation of a pirate I was then ready to be taken back to the ward, where I had a lot of frustrated attempts at using my Nintendo DS, but without actually being able to see what I was doing. I had my glasses, but I couldn't get them on with the big patch and eye guard on my right eye bo) As the anaesthetic wore off my eye got very stingy, but I wasn't offered any pain killers so I waited until I got home. The patch had to stay on for the rest of the day and that night, but I could take it off the next day, and I now only have to wear the guard at night for the next week (having already worn it at night for a week), just to make sure that I don't rub it in the night. Mornings seem to be worse for swelling and bruising, but there hasn't been toooooo much of either. At first there was a lot of black and white flickering and it kind of looked like water was boiling in my eye, but that was just everything settling down. I'm still getting some flickering in the mornings, but mostly it's settling well bo)
I have to wait until I've had the left eye done before I can get a new prescription for my glasses - should be about 6 weeks till the second op, but no date yet - so it'll be a while till I get the full benefit of all this, but already I can tell a difference. For starters, I have the central vision back in my right eye! That's amazing! Everything's brighter. Colours are so vivid and vibrant! I hadn't notice how dulled colours had become, probably because the colour was leeched out of my world slowly as the cataracts developed, but now half the world is alive in a romp of colour again bo) And even though I'm yet to have my glasses prescription sorted, things already have more defined edges. The world is made of crystal, not frosted glass! Mind you, now that my right eye is done (the worst of the two) I see how bad the left eye is and I can hardly wait until both eyes are cataract-free and my glasses sorted. At the moment the world's a bit lopsided, but it's already a lot better than it was.
One of the temporary downsides is that I'm not allowed to drive for three weeks from the op - so I have another two weeks to go - and I'm feeling rather cooped up. Until both eyes are done then it seems that I won't be able to read or do any close work bo( I'm getting bored. I want to be doing cross-stitch and reading the novel I started shortly before the op, and I also have some reading to do in preparation for my next OU course. I've ordered some magnifying sheets from an online company but they haven't arrived yet. I'm okay using the computer as I can enlarge the text on the screen, but doing anything else much is proving very difficult and frustrating. The other thing is that I'm not allowed to get water in my eye for two weeks after the op, which isn't generally a problem except for when it comes to washing my hair. I don't have a shower, just a shower hose that attaches to the bath taps, but I can't easily use that backwards. My mum and step-dad stayed with me and looked after me from the day before the op until Sunday (and a marvellous job they did too!), so Mum helped me to wash my hair (leaning backwards over the side of the bath. That is, I was leaning backwards over the side of the bath, not Mum!) while she was here. Since Sunday though I've been to the hair dressers for a wash and blow dry, and have booked in for three more between now and next Wednesday, when I should be okay to do my hair myself again. I have to say that I was surprised at how expensive it is just to have a wash and blow dry (£13), so I'm just thinking of it as post-operative pampering ... or at least trying to.
All in all, it went okay. I was nervous, and it's not an experience I'd suggest putting on your 'Things To Do When Bored' list, but it's going to be fab when I've had both eyes done ... and when I don't have to put eye drops in four times a day ... or take other anitbiotics three times a day for the chest infection that I've managed to pick up along the way. Yes, another one! Still, on the bright side (that'll be the right side, now that the cataract from that eye is gone ;oP ), the driving restriction from the eye op is making me rest up, sofa surf and generally take things easy so my lungs might have more chance of clearing the infection.
Sunday, 11 July 2010
Ten
It's only ten days until my first cataract removal operation. I'm a little nervous, but I'm also excited at the prospect of being able to see properly again. I was at the garden centre with my mum earlier today (she came down from Edinburgh for the weekend) and I found it very difficult indeed to read the labels on the plants I was looking at. It's all slightly complicated by the Holmes-Adies Pupil in my left eye, because the bright sunlight was blinding me in that eye as it doesn't accommodate, but when I closed that eye to stop the pain, the dazzle, and to protect it I was left with pretty much only peripheral vision in my right eye due to the cataract. Reading doesn't happen very well with no/very little central vision.
When I went for the assessment for surgery with the ophthalmologist they (there were two of them) were very keen that I know that there's a one in two hundred chance of my vision being worse after the cataract removal op, and a one in one thousand chance of losing my vision in that eye all together. Obviously this is a consideration, a slight concern - particularly the possibility of losing vision entirely - but without the op there is absolute certainty that I will go blind, so the decision was a no-brainer. You may remember that originally the ophthalmologist had said that they'd never operate on my cataracts because of my lungs and the risk of anaesthetic complications, even with a local anaaesthetic. I know there are risks, but I had discussed the ophthalmologist's concerns with Dr H (asthma consultant) and he'd reassured me that I ought to be fine with a local anaesthetic, so I was able to pass this on to the ophthalmologists when I saw them for surgery assessment, and was also able to say that Dr H would be happy to discuss things lung-related with them if they wanted. The possibility of this, and the conversation I'd had with Dr H that I was able to tell them about seemed to be enough to reassure them at this time, and they agreed to do the surgery. Well, they agreed that the surgery can happen, but they've made sure that the consultant is going to do it in case of any complications with my asthma. I'm sure there won't be. I'm sure I'll be fine. In fact, that side of things isn't really concerning me at all ... it's the prospect of someone stabbing me in the eye with a sharp knife while I'm awake that's making me apprehensive. I just have to keep focussing on the end result - central vision returned, and most likely better sight in general :o)
I wish I knew how long I'm going to have to wait between the op a week on Wednesday and the same op on my left eye. I'm told that they're usually done in fairly quick succession - two or three weeks - but I don't know for sure. There's going to be an odd time between the ops when my sight it different from how it is now and my glasses prescription is different from what it's going to need to be. There's no point in getting new glasses in that interim period (aside from it being stupidly expensive as well as pointless for such a short time) so I'm not expecting to be able appreciate the full benefits of having the cataracts removed until after both ops have been done and I get new glasses. The other thing is that I wear varifocals and these usually take about a week to get from the opticians, so even after both ops have been done, the second eye has settled after the op, and I've been to the optician to see what my new glasses prescription will be, I've still got a bit of a wait until I can see better. I also doubt that I should drive during this time, which is going to be very restrictive. Still, I will hold on to the longer-term positives.
It all starts ten days from now. The countdown to better vision has begun :o)
When I went for the assessment for surgery with the ophthalmologist they (there were two of them) were very keen that I know that there's a one in two hundred chance of my vision being worse after the cataract removal op, and a one in one thousand chance of losing my vision in that eye all together. Obviously this is a consideration, a slight concern - particularly the possibility of losing vision entirely - but without the op there is absolute certainty that I will go blind, so the decision was a no-brainer. You may remember that originally the ophthalmologist had said that they'd never operate on my cataracts because of my lungs and the risk of anaesthetic complications, even with a local anaaesthetic. I know there are risks, but I had discussed the ophthalmologist's concerns with Dr H (asthma consultant) and he'd reassured me that I ought to be fine with a local anaesthetic, so I was able to pass this on to the ophthalmologists when I saw them for surgery assessment, and was also able to say that Dr H would be happy to discuss things lung-related with them if they wanted. The possibility of this, and the conversation I'd had with Dr H that I was able to tell them about seemed to be enough to reassure them at this time, and they agreed to do the surgery. Well, they agreed that the surgery can happen, but they've made sure that the consultant is going to do it in case of any complications with my asthma. I'm sure there won't be. I'm sure I'll be fine. In fact, that side of things isn't really concerning me at all ... it's the prospect of someone stabbing me in the eye with a sharp knife while I'm awake that's making me apprehensive. I just have to keep focussing on the end result - central vision returned, and most likely better sight in general :o)
I wish I knew how long I'm going to have to wait between the op a week on Wednesday and the same op on my left eye. I'm told that they're usually done in fairly quick succession - two or three weeks - but I don't know for sure. There's going to be an odd time between the ops when my sight it different from how it is now and my glasses prescription is different from what it's going to need to be. There's no point in getting new glasses in that interim period (aside from it being stupidly expensive as well as pointless for such a short time) so I'm not expecting to be able appreciate the full benefits of having the cataracts removed until after both ops have been done and I get new glasses. The other thing is that I wear varifocals and these usually take about a week to get from the opticians, so even after both ops have been done, the second eye has settled after the op, and I've been to the optician to see what my new glasses prescription will be, I've still got a bit of a wait until I can see better. I also doubt that I should drive during this time, which is going to be very restrictive. Still, I will hold on to the longer-term positives.
It all starts ten days from now. The countdown to better vision has begun :o)
Friday, 18 June 2010
Coming together
First of all I'd like to thank Dawn, B and Raven/Missy for their lovely comments of support on my last post. It has meant a lot and I'm truly thankful. Since posting To be honest I've taken on board all advice given, I've given into the tears and I'm actually feeling better for it. I was so scared that if I let the upset come to the surface for any protracted time then it'd consume me and I'd end up in that deep, dark pit of depression again, but no, letting some of it out has released the build up and life is picking up again. It turns out that I was also harbouring a chest infection, which I'm sure was feeding into the emotional misery. I'm still rather peeved that I've picked up a chest infection so soon after coming out of hospital, and when I went to my GP on Monday she was keen to have me readmitted :o( To be fair, this GP is new to the practice, hadn't met me before, and so doesn't know my staying-at-home threshold, but she was concerned enough to offer to pay for a taxi to get me home despite my only living 4 streets away from the surgery! I hate to admit it, but I'd actually driven round because I didn't think I'd manage to walk that far, but this seemed to be something of a relief for the doc. Anyway, I didn't go into hospital, but promised that I would go in if I got any worse. I haven't got worse, but I don't seem to have got a whole lot better either, despite the industrial strength antibiotics :o( I have to go back to one of the other GPs next week anyway for a check on the med for my heart rate (ivabradine), so I'll get my lungs checked again then too ... unless of course I need them seeing to sooner, but I sincerely hope I don't. I'm a bit fed up with all this, and with being so knacked...
When I saw the GP on Monday, I also 'came clean' about feeling low. It was almost a passing comment thing, but she picked up on it and offered to refer me to the practice counsellor. The waiting list is four to six weeks, and seeing as I have an appointment with my psychiatrist on Wednesday I said that I'd wait to see how things go with Dr T next week, but that I'd bear it in mind. And now that I'm picking up a little I don't think I'm going to need it, but it was good to be given the option. It's odd in a way, but I think that being honest with the doc about being down and verging on depression has actually helped to pull me out of it a little ... perhaps because it's not a secret, and secrecy can allow the beast of depression to grow into a savage monster. Reveal the secret and the negative force that feeds the beast is released.
Another thing that was getting to me last week was my vision. I have very little central vision in my right eye now from the cataract, and when I was on the beach last Saturday I was looking around, saw a bird, but then had to close my left eye because the sunlight was hurting it due to the Holmes-Adies Pupil, and the bird disappeared. It was still there, flying above me, but I couldn't see it. Thankfully I have my first cataract removal operation on 21st July so this situation will change, but I'm not looking forward to the actual procedure, so it's a mixed thing. I want to be able to see properly again, but I'm also nervous, even though everyone tells me it's quite a simple op and people they know who've had it done say how brilliant it is. I'm sure it must be normal to be nervous about having it done though, despite its brilliance ... isn't it? Surely it'd be more weird not to be a little anxious...?
I had a call from my social worker a couple of days ago. She's leaving. It's hard to believe that I've had her as my social worker for several years, yet only recently found out that I have a social worker, and now she's leaving. However, she did say that my case will be handed over to someone else and that if/when I need to get in touch with them then I need only phone the disabilities team, so that's positive. The other thing she said was that the increased care package she'd put forward for me has been approved and that it starts next Tuesday. Three times a week someone is going to come in, cook me a meal (and have enough to put in the freezer for other days) and be around while I have a bath as I'm more prone to fainting from the POTS and VS when I get hot from the bath. This is good news, and it'll be helpful, but it's also a very mixed thing to get my head around ... I know it's so that I can maintain independence, but at the same time it's a significant loss of independence ... Does that make sense? I never imagined that at age 36 I'd have a carer coming to my home 4 times a week (I already have a carer come once a week to do my cleaning) ... It's strange how life turns out, isn't it?
I'll get there. I am getting there. Life is coming back to me and I've been enjoying the beautiful song of the blackbird that sings outside in the backlane. I haven't seen it, and I don't remember it from previous years, but this year its musical voice has fed my soul and made me smile, particularly at 3.30am when the night has been long and the bird song begins. Yes, there's still a lot of smile left in me yet :o)
When I saw the GP on Monday, I also 'came clean' about feeling low. It was almost a passing comment thing, but she picked up on it and offered to refer me to the practice counsellor. The waiting list is four to six weeks, and seeing as I have an appointment with my psychiatrist on Wednesday I said that I'd wait to see how things go with Dr T next week, but that I'd bear it in mind. And now that I'm picking up a little I don't think I'm going to need it, but it was good to be given the option. It's odd in a way, but I think that being honest with the doc about being down and verging on depression has actually helped to pull me out of it a little ... perhaps because it's not a secret, and secrecy can allow the beast of depression to grow into a savage monster. Reveal the secret and the negative force that feeds the beast is released.
Another thing that was getting to me last week was my vision. I have very little central vision in my right eye now from the cataract, and when I was on the beach last Saturday I was looking around, saw a bird, but then had to close my left eye because the sunlight was hurting it due to the Holmes-Adies Pupil, and the bird disappeared. It was still there, flying above me, but I couldn't see it. Thankfully I have my first cataract removal operation on 21st July so this situation will change, but I'm not looking forward to the actual procedure, so it's a mixed thing. I want to be able to see properly again, but I'm also nervous, even though everyone tells me it's quite a simple op and people they know who've had it done say how brilliant it is. I'm sure it must be normal to be nervous about having it done though, despite its brilliance ... isn't it? Surely it'd be more weird not to be a little anxious...?
I had a call from my social worker a couple of days ago. She's leaving. It's hard to believe that I've had her as my social worker for several years, yet only recently found out that I have a social worker, and now she's leaving. However, she did say that my case will be handed over to someone else and that if/when I need to get in touch with them then I need only phone the disabilities team, so that's positive. The other thing she said was that the increased care package she'd put forward for me has been approved and that it starts next Tuesday. Three times a week someone is going to come in, cook me a meal (and have enough to put in the freezer for other days) and be around while I have a bath as I'm more prone to fainting from the POTS and VS when I get hot from the bath. This is good news, and it'll be helpful, but it's also a very mixed thing to get my head around ... I know it's so that I can maintain independence, but at the same time it's a significant loss of independence ... Does that make sense? I never imagined that at age 36 I'd have a carer coming to my home 4 times a week (I already have a carer come once a week to do my cleaning) ... It's strange how life turns out, isn't it?
I'll get there. I am getting there. Life is coming back to me and I've been enjoying the beautiful song of the blackbird that sings outside in the backlane. I haven't seen it, and I don't remember it from previous years, but this year its musical voice has fed my soul and made me smile, particularly at 3.30am when the night has been long and the bird song begins. Yes, there's still a lot of smile left in me yet :o)
Monday, 17 May 2010
Bullet point update
This is going to be very short and in note form as I'm snowed under at the moment, but also very aware that I need to update you all.
- I'm working myself into the ground with essay writing
- I'm on to the last hurdle of my current OU course - Children's Literature
- Trying to write ECA (End of Course Assessment - like a short dissertation-type-thing) and it's resulting in ECA (Emerging Cranial Atrophy) ;oP
- Not sleeping at all well and have had two nights this week with no sleep at all, and all other nights have been disturbed
- Lungs are on the downward slide
- I think when the essays are done and sent, and the adrenaline has subsided then I might be in for a lung-splat :o(
- Peak flow currently around 150 post-neb, so while that's pants it isn't (yet) awful awful awful ... for me.
- Lung grumpiness is contributing to lack of sleep
- Lack of sleep has meant that I've listened to a lot of the World Service.
- Heard a news story on WS a week or so ago about a British man in Spain (a Lord, or something ... can't remember) who's been issued with an eviction notice ... on his grave! He's been dead since the late 1960s, but the authorities are seriously considering exhuming him for not having his grave maintained, which isn't all that surprising as his wife died not long after him and they didn't have any children. Madness!
- Heard another item on the news about the result of one of the local elections, but unfortunately I can't remember where it was. Anyway, the results of the two leading parties were exactly the same so they got out a pack of cards and drew for the highest - highest card won! Shockingly this is within the laws of election!
- Missed cateract operation date last week because the first I knew about it was a phone call from a nurse on the eye ward asking me if I knew I was supposed to be there for surgery. No! I didn't! They'd forgotten to send me a letter! &*^£%! I've had to go back on the waiting list and can only hope that they tell me about it next time. Very, very annoyed!
- My shoulder is still sore, but it's mending now
- I've run out of milk and the cat is rubbish at shopping
Friday, 23 April 2010
The ups and downs and ins and outs
Phew, it's been a bit of time of medical things and hospital appointments lately. Last week I went back to the falls and syncope clinic at RVI for another tilt table test, but this time 'in a hoover back', as it was described to me at my previous appointment. It turned out not to be a hoover bag as such, but more of a vacuum chamber that covered my lower body and came up to somewhere around the bottom of my ribs. The test started with me lying flat for five minutes or so, with my bp and heart rate being constantly monitored, and then the bed was tilted to about 70 - 80 degrees. The vacuum was kept off for the first ten minutes, so I was just standing there (the bed has a footplate), although I felt incredibly nauseous and kept retching. The almost-upright bed was at such a height that I was towering above the nurses and the consultant and I imagined that I was going to throw up all over the tops of their heads. Thankfully I didn't, and I'm sure they're even more thankful! Although the nausea had started only a few minutes into the test, I lasted for a total of seventeen minutes, with the vacuum having been turned on after ten minutes. The last thing I remember saying was, 'I think I'm going to go.' I was right. I passed out and came around with the bed flat, the vacuum chamber removed, my legs up on a beanbag and the consultant wiggling my feet. It's bad enough fainting when I'm on my own or even when there are other people around who are just getting on with life, but it's another thing having people stand around, watching, and waiting for you to pass out. It's also not so great when those who have just seen you pass out are really pleased that you have done. The consultant was just a bit too happy about it for my liking ;oP Anyway, he said that my blood pressure 'went ridiculously low, but it was conclusive.' I asked about my BP, and was told that it had gone from 128/70 - text book normal - to 20/0 - barely a BP at all! So the conclusion is that as well as POTS, I have vasovagal syncope. Now the medication I was on for the POTS - ditiazem - has the potential to lower BP so it obviously wasn't a good idea that I stay on it, and it's been changed to ivabradine, another med really designed for angina. I've started on a very low dose, but it's planned that this will be increased in another couple of weeks time, so hopefully I'll see a bit more improvement in my heart rate then, because at the moment it's going faster than it was when I was on the diltiazem, though still slower than it was (most of the time) before any medication. So that's where I'm up to ... or down to ... with the falls and syncope clinic, and I'm due back in 11 or 12 weeks.
On Wednesday I managed to dislocate my right shoulder. I don't recommend it. It hurts. I managed to get it back in myself by holding my right wrist with my left hand and swinging my arms at a weird kind of angle. I just did what it felt like needed to be done, and thankfully it worked, though the pain of it going back in caused me to pass out, but I was expecting this as I did the same thing about 15 years ago, so I was standing next to the bed while I did this so that I had a soft landing. It was still very sore and movement was restricted, but I thought I'd see how things went. In the end though I went to A&E to get it checked out and x-rayed. I'm pleased to say that it was fully back in place and in the right place, and that there was no fracture. The nurse was about to put a sling on me, but I wondered if my shoulder was likely to better more quickly if I keep using it. The nurse that to an extent that's true, but to keep the sling because I'd probably find that I need it to rest my arm for several days at least, and it'll take about six weeks for my shoulder to heal properly :o( I did take the sling, and I'm glad that I did because my shoulder's been very painful and resting it has helped a little, although it's very inconvenient, especially as I'm right handed. Anyway, I'm using it a lot and my asthma consultant yesterday said that he'd recommend using the sling all the time for a week or so, but then start mobilising it a bit more so that it doesn't seize up. That's what I'm doing.
As I've just mentioned, yesterday I had an appointment with Dr H, and of course the main thing on my mind for this appointment was the result of any conversations he'd had with Dr G about the possibility of portacath, as I talked about here. Dr H said he'd spoken to both Dr G and Dr K - an ITU consultant who knows me very well, and that initially both were taken aback by the idea, but when they went on to discuss it further they could see the positives and all have decided that it can happen. They do all have their concerns, most importantly my MRSA positive status as the portacath obviously goes straight into the bloodstream so any infection is potentially extremely serious. There is one proviso, and that is that the port is never used in A&E, because they're not trained in using them. It can of course be used on ward 29 and also on emergency admissions at RVI as one of the nurses from the respiratory ward there (wd 52) can come, and they're as experienced as the staff on 29 because they deal with a lot of CF patients. Dr H had been going to suggest that the op be done very soon, but we're having to wait now until my shoulder is better :o( Apparently ports are usually put in the left side, but sometimes they have to go in the right if the docs can't get into the left well enough, and Dr H didn't want to get me all geared up for it only to have to postpone it because we couldn't move my arm into a suitable position. He said he'd email Dr G and let him know what the plan is, and that it'll likely happen in July/August. I'm disappointed that it's being delayed by my shoulder (though I understand and agree with the argument), but I'm 'pleased' that the portacath is going ahead ... pleased in an odd kind of way, because it's not something that one really wants to have to be pleased about.
I told you in my Head-spin post that the ophthalmologists have agreed to remove my cataracts, but that by the time my appointment had finished all the 'dates people' had gone home, because the clinic was running three hours late! I was told that I'd get a letter in the post with an appointment, but I still haven't heard anything so I phoned them up today. They still can't give me a date as I'm down to have the op done by the consultant. I don't really understand why this means they can't yet give me a date, but they did say that it's likely to be mid-June that I have the op. Although this is a couple of months wait it actually fits in quite well with other things that are going on, like my OU course that's due to finish on 27th May, and a few days away with W in the first week of June. There might even be a little bit of recovery time between the first cataract op, the portacath op, and then the second cataract op.
Off on a tangent of ins and outs... I can't drive for a few days because of my shoulder so I had to get a taxi to my appointment with Dr H yesterday. I ordered the taxi at 8:40 thinking this would give me plenty of time to get to my 9am appointment. I went to wait for it outside, sitting on the garden wall, and I waited, and I waited, and I waited some more. I was getting a little frustrated when it hadn't turned up by 8:55am and was about to phone the taxi firm to ask where the cab was when the car pulled in and flashed its lights. I got into the car, and said where I wanted to go. The driver looked at me. She looked rather scared. Then I realised that I wasn't sitting in a taxi, but in a random woman's car! 'You're not a taxi, are you?' I said. She shook her head. 'Um, okay ... I'll be getting out, then...' I mumbled in a very embarrassed hurry as I clambered out and attempted to appear unruffled. I ambled back to the wall, sat down again, and realised that the poor, now traumatised lady, had pulled in and flashed her lights to allow another car to pass. Oops.
On Wednesday I managed to dislocate my right shoulder. I don't recommend it. It hurts. I managed to get it back in myself by holding my right wrist with my left hand and swinging my arms at a weird kind of angle. I just did what it felt like needed to be done, and thankfully it worked, though the pain of it going back in caused me to pass out, but I was expecting this as I did the same thing about 15 years ago, so I was standing next to the bed while I did this so that I had a soft landing. It was still very sore and movement was restricted, but I thought I'd see how things went. In the end though I went to A&E to get it checked out and x-rayed. I'm pleased to say that it was fully back in place and in the right place, and that there was no fracture. The nurse was about to put a sling on me, but I wondered if my shoulder was likely to better more quickly if I keep using it. The nurse that to an extent that's true, but to keep the sling because I'd probably find that I need it to rest my arm for several days at least, and it'll take about six weeks for my shoulder to heal properly :o( I did take the sling, and I'm glad that I did because my shoulder's been very painful and resting it has helped a little, although it's very inconvenient, especially as I'm right handed. Anyway, I'm using it a lot and my asthma consultant yesterday said that he'd recommend using the sling all the time for a week or so, but then start mobilising it a bit more so that it doesn't seize up. That's what I'm doing.
As I've just mentioned, yesterday I had an appointment with Dr H, and of course the main thing on my mind for this appointment was the result of any conversations he'd had with Dr G about the possibility of portacath, as I talked about here. Dr H said he'd spoken to both Dr G and Dr K - an ITU consultant who knows me very well, and that initially both were taken aback by the idea, but when they went on to discuss it further they could see the positives and all have decided that it can happen. They do all have their concerns, most importantly my MRSA positive status as the portacath obviously goes straight into the bloodstream so any infection is potentially extremely serious. There is one proviso, and that is that the port is never used in A&E, because they're not trained in using them. It can of course be used on ward 29 and also on emergency admissions at RVI as one of the nurses from the respiratory ward there (wd 52) can come, and they're as experienced as the staff on 29 because they deal with a lot of CF patients. Dr H had been going to suggest that the op be done very soon, but we're having to wait now until my shoulder is better :o( Apparently ports are usually put in the left side, but sometimes they have to go in the right if the docs can't get into the left well enough, and Dr H didn't want to get me all geared up for it only to have to postpone it because we couldn't move my arm into a suitable position. He said he'd email Dr G and let him know what the plan is, and that it'll likely happen in July/August. I'm disappointed that it's being delayed by my shoulder (though I understand and agree with the argument), but I'm 'pleased' that the portacath is going ahead ... pleased in an odd kind of way, because it's not something that one really wants to have to be pleased about.
I told you in my Head-spin post that the ophthalmologists have agreed to remove my cataracts, but that by the time my appointment had finished all the 'dates people' had gone home, because the clinic was running three hours late! I was told that I'd get a letter in the post with an appointment, but I still haven't heard anything so I phoned them up today. They still can't give me a date as I'm down to have the op done by the consultant. I don't really understand why this means they can't yet give me a date, but they did say that it's likely to be mid-June that I have the op. Although this is a couple of months wait it actually fits in quite well with other things that are going on, like my OU course that's due to finish on 27th May, and a few days away with W in the first week of June. There might even be a little bit of recovery time between the first cataract op, the portacath op, and then the second cataract op.
Off on a tangent of ins and outs... I can't drive for a few days because of my shoulder so I had to get a taxi to my appointment with Dr H yesterday. I ordered the taxi at 8:40 thinking this would give me plenty of time to get to my 9am appointment. I went to wait for it outside, sitting on the garden wall, and I waited, and I waited, and I waited some more. I was getting a little frustrated when it hadn't turned up by 8:55am and was about to phone the taxi firm to ask where the cab was when the car pulled in and flashed its lights. I got into the car, and said where I wanted to go. The driver looked at me. She looked rather scared. Then I realised that I wasn't sitting in a taxi, but in a random woman's car! 'You're not a taxi, are you?' I said. She shook her head. 'Um, okay ... I'll be getting out, then...' I mumbled in a very embarrassed hurry as I clambered out and attempted to appear unruffled. I ambled back to the wall, sat down again, and realised that the poor, now traumatised lady, had pulled in and flashed her lights to allow another car to pass. Oops.
Tuesday, 6 April 2010
Head-spin
I haven't forgotten you. I'm still here. I've just been rather preoccupied. First of all, I did inevitably end up in hospital after my last post. I called the ward first, but they didn't have any beds so I called my GP. The receptionist gave me an appointment for 4pm, but an hour later I had a call from them to say that the doc had seen me on the list, asked the receptionist how I'd sounded when I'd rung, been told that I sounded ill, and so asked them to phone me back and ask me to come in asap. So I took myself up to the doctors (actually a friend took me up there in the car, even though it's only a few streets away, but multi-tasking walking and breathing wasn't my thing at the time), and went straight from there to hospital. My GP knows of the problems I've had at RVI before, so knows of my reluctance to go there. He phoned Ward 29 and managed to persuade them that they did have a bed for me really so I was able to go straight to my second home and be treated by people who know how to treat me, and who treat me well. It took a long time for things to settle, and as usual I didn't get any sleep the first night, because I was having to concentrate on getting every breath in and out. Things did eventually settle enough for me to get some rest, and I did my usual thing of sleeping for several days, but progress was slow, I stayed on the aminophylline infusion for over a week as my lungs were so precarious, and I was in hospital for two weeks altogether. I know that I usually update my blog from hospital, but my internet connection (mobile broadband when I'm in hospital) was rubbish, so apologies for that. Since then I've been trying to get my head around a few things.
When I was in this time the issue of getting venous access was a big thing again. It's getting more and more difficult to get a line into me, and while persistence can pay off, it most usually takes at least 45 minutes or more to find a vein and actually get a cannula into me these days. In a non-urgent situation this an uncomfortable nuicance, but in the midst of a life-threatening asthma attack this is getting too dangerous, and it's only a matter of time before the docs can't get access in time. One solution would be to have a portacath fitted - a piece of permenant plumbing - and discussions are now in progress about my suitability for it. The respiratory consultant who 'fits' them - Dr G - is at the RVI, and is someone I've met on several occasions so he knows some of my history, which is helpful. The surgery isn't risk free (no surgery is), even though it's usually done under local anaesthetic, as there's the possibility of lung collapse, and of course the risk of infection. One of the complicating factors with me is that I'm MRSA positive and apparently Dr G always insists that patients are MRSA-free before having the op. This is only right and proper in most cases, but I'm allergic to the MRSA eradication treatment so getting rid of it is pretty much impossible. There are a few antibiotics that can be tried, but I've had at least one of them on several occasions over the years that I've been MRSA positive (I've had them for infections) and I'm still positive so it seems that Mrs A likes my company and is reluctant to leave me be. It might be that Dr G has to make an exception in my case if the decision is made that I'm to have a portacath implanted. The other consideration is that people have to be trained to use them, and while that's fine if I'm on Ward 29 where there are plenty of staff who know how to use them and have the training, it's not so good in A&E if I end up there. J, the charge nurse on the ward, said that he could provide some printed instructions, but they're hardly ideal and certainly don't replace the need for training. I asked if I could be trained to use it so that if/when I end up in A&E I could do what's required myself. J said that in theory this is possible, but in practice it's unlikely that I'd be well enough by the time I get to A&E to be able to do what's required. I think this is the main issue and reason for debate about my suitability for a port, but my consultant - Dr H - is going to discuss it with Dr G. Portacaths aren't usually fitted in people with asthma - they're more often used in people with cystic fibrosis or bronchiectasis - so it's a big acknowledgement of where things have got to with me. It's a lot to get my head around, but I think it's the way forward. It's not exactly something to want, but given the situation I'm in and the fact that it's too often getting too close to not getting venous access in time, I think I do want this (if you know what I mean). I also trust J implicitly, and I think it's highly significant that he's suggesting and supporting the idea of a portacath for me as he's certainly not one to opt for these things unless absolutely necessary. He knows that I 'want' it too and is urging Dr H to agree with the suggestion. Dr H himself isn't averse to the idea, and he certainly knows of the difficulties of getting venous access in me, but he wants to discuss it with Dr G first and get his opinion as well. I'm anxious to get an answer, and had been hoping that Dr H would contact me to let me know the outcome of any discussion. He may do yet as I know that both Dr G and Dr H have been away (not together!) so the discussion may not have happened yet, but I want to know, and preferably before my next out patients appointment in a couple of weeks time.
Another big thing that came from this most recent admission is that they cultured the pseudomonas bacterium in my sputum. Apparently it is possible for people who spend a lot of time in hospital to 'get' pseudomonas, but it's most commonly found in people with bronchiectasis - a kind of permenant lung damage - so the doctors are now questioning whether or not I have a degree of bronchiectasis on top of the asthma. Pseudomonas is an indicator of it, but a CT scan would need to be done to confirm or reject a diagnosis, and it will be up to Dr H to decide if/when this needs to be done. The sputum culture only came back about two days before I was discharged, and during a weekend when Dr H wasn't at work so I've yet to discuss it with him, but it's another big thing that's had my head in a bit of a spin. In some ways a diagnosis of bronchiectasis would explain a few things, like the increase in chest infections that I've had over the past nine months or so, and the fact that it's been taking longer and longer for me to get over the acute asthma attacks. And in some ways, in the immediate term things may not change very much regarding medication and quality of life, but bronchiectasis tends to be progressive, particularly if there's additional underlying problems, so coulpled with my asthma the prognosis wouldn't be very good. I'm trying not to think about it too much until I've had a chance to talk about it with Dr H and maybe have a CT scan, but I can't help but have it go through my mind a certain amount. It's a lot to take in...
And then there's my cataracts, that are a consequence of the long-term high-dose steroids(ridiculously high-dose - they were at 120mg while I was in hospital!) I take for my asthma. I've had the cataracts for five years, and although they're small they're absolutely central and are now getting a lot denser. The one in my right eye is worse than the one in my left, which is slightly unfortunate as I have Holmes-Adie Pupil in the left eye so my vision isn't great from that. In the past the ophthalmologists have said that they'd never operate on my cataracts because of the risks of surgery on my lungs, even though cataract surgery is usually done under local anaesthetic (they've said there's still a risk), but when I saw the optician recently she said that she thinks the cataracts now need operating on. She wrote to my GP, who referred me back to the ophthalmologists and I had an out patient appointment with them last Thursday. W came with me for moral support and to help (if needs be) put my point across that I'd much rather take the possibility of risks from surgery than the definite scenario of blindness from cataracts. In the end I was able to tell them this, and although they were reluctant at first and requested another doctor come and examine me to assess my need for surgery and weigh up the risks, they have agreed to do the op! They've decided that because of my 'complicated medical history' only a consultant should do the op, not an SpR, but that suits me fine, because quite frankly if someone's going to come and stab me in the eye with a knife I want it to be someone who *really* knows what they're doing. I don't have a date yet, but it should be within the next two to three months. I'm so pleased, although again it's a big thing (at least it is for me!), so while it's good news and definitely what I want it's something else to be getting my head around.
It's a lot. It's a heck of a lot. At times I've felt as though my head is going to explode with all that's been going on, so apologies again for not having updated in so long, but sometimes I need to spend a bit of time assimilating this kind of stuff on my own before sharing it with everyone.
When I was in this time the issue of getting venous access was a big thing again. It's getting more and more difficult to get a line into me, and while persistence can pay off, it most usually takes at least 45 minutes or more to find a vein and actually get a cannula into me these days. In a non-urgent situation this an uncomfortable nuicance, but in the midst of a life-threatening asthma attack this is getting too dangerous, and it's only a matter of time before the docs can't get access in time. One solution would be to have a portacath fitted - a piece of permenant plumbing - and discussions are now in progress about my suitability for it. The respiratory consultant who 'fits' them - Dr G - is at the RVI, and is someone I've met on several occasions so he knows some of my history, which is helpful. The surgery isn't risk free (no surgery is), even though it's usually done under local anaesthetic, as there's the possibility of lung collapse, and of course the risk of infection. One of the complicating factors with me is that I'm MRSA positive and apparently Dr G always insists that patients are MRSA-free before having the op. This is only right and proper in most cases, but I'm allergic to the MRSA eradication treatment so getting rid of it is pretty much impossible. There are a few antibiotics that can be tried, but I've had at least one of them on several occasions over the years that I've been MRSA positive (I've had them for infections) and I'm still positive so it seems that Mrs A likes my company and is reluctant to leave me be. It might be that Dr G has to make an exception in my case if the decision is made that I'm to have a portacath implanted. The other consideration is that people have to be trained to use them, and while that's fine if I'm on Ward 29 where there are plenty of staff who know how to use them and have the training, it's not so good in A&E if I end up there. J, the charge nurse on the ward, said that he could provide some printed instructions, but they're hardly ideal and certainly don't replace the need for training. I asked if I could be trained to use it so that if/when I end up in A&E I could do what's required myself. J said that in theory this is possible, but in practice it's unlikely that I'd be well enough by the time I get to A&E to be able to do what's required. I think this is the main issue and reason for debate about my suitability for a port, but my consultant - Dr H - is going to discuss it with Dr G. Portacaths aren't usually fitted in people with asthma - they're more often used in people with cystic fibrosis or bronchiectasis - so it's a big acknowledgement of where things have got to with me. It's a lot to get my head around, but I think it's the way forward. It's not exactly something to want, but given the situation I'm in and the fact that it's too often getting too close to not getting venous access in time, I think I do want this (if you know what I mean). I also trust J implicitly, and I think it's highly significant that he's suggesting and supporting the idea of a portacath for me as he's certainly not one to opt for these things unless absolutely necessary. He knows that I 'want' it too and is urging Dr H to agree with the suggestion. Dr H himself isn't averse to the idea, and he certainly knows of the difficulties of getting venous access in me, but he wants to discuss it with Dr G first and get his opinion as well. I'm anxious to get an answer, and had been hoping that Dr H would contact me to let me know the outcome of any discussion. He may do yet as I know that both Dr G and Dr H have been away (not together!) so the discussion may not have happened yet, but I want to know, and preferably before my next out patients appointment in a couple of weeks time.
Another big thing that came from this most recent admission is that they cultured the pseudomonas bacterium in my sputum. Apparently it is possible for people who spend a lot of time in hospital to 'get' pseudomonas, but it's most commonly found in people with bronchiectasis - a kind of permenant lung damage - so the doctors are now questioning whether or not I have a degree of bronchiectasis on top of the asthma. Pseudomonas is an indicator of it, but a CT scan would need to be done to confirm or reject a diagnosis, and it will be up to Dr H to decide if/when this needs to be done. The sputum culture only came back about two days before I was discharged, and during a weekend when Dr H wasn't at work so I've yet to discuss it with him, but it's another big thing that's had my head in a bit of a spin. In some ways a diagnosis of bronchiectasis would explain a few things, like the increase in chest infections that I've had over the past nine months or so, and the fact that it's been taking longer and longer for me to get over the acute asthma attacks. And in some ways, in the immediate term things may not change very much regarding medication and quality of life, but bronchiectasis tends to be progressive, particularly if there's additional underlying problems, so coulpled with my asthma the prognosis wouldn't be very good. I'm trying not to think about it too much until I've had a chance to talk about it with Dr H and maybe have a CT scan, but I can't help but have it go through my mind a certain amount. It's a lot to take in...
And then there's my cataracts, that are a consequence of the long-term high-dose steroids(ridiculously high-dose - they were at 120mg while I was in hospital!) I take for my asthma. I've had the cataracts for five years, and although they're small they're absolutely central and are now getting a lot denser. The one in my right eye is worse than the one in my left, which is slightly unfortunate as I have Holmes-Adie Pupil in the left eye so my vision isn't great from that. In the past the ophthalmologists have said that they'd never operate on my cataracts because of the risks of surgery on my lungs, even though cataract surgery is usually done under local anaesthetic (they've said there's still a risk), but when I saw the optician recently she said that she thinks the cataracts now need operating on. She wrote to my GP, who referred me back to the ophthalmologists and I had an out patient appointment with them last Thursday. W came with me for moral support and to help (if needs be) put my point across that I'd much rather take the possibility of risks from surgery than the definite scenario of blindness from cataracts. In the end I was able to tell them this, and although they were reluctant at first and requested another doctor come and examine me to assess my need for surgery and weigh up the risks, they have agreed to do the op! They've decided that because of my 'complicated medical history' only a consultant should do the op, not an SpR, but that suits me fine, because quite frankly if someone's going to come and stab me in the eye with a knife I want it to be someone who *really* knows what they're doing. I don't have a date yet, but it should be within the next two to three months. I'm so pleased, although again it's a big thing (at least it is for me!), so while it's good news and definitely what I want it's something else to be getting my head around.
It's a lot. It's a heck of a lot. At times I've felt as though my head is going to explode with all that's been going on, so apologies again for not having updated in so long, but sometimes I need to spend a bit of time assimilating this kind of stuff on my own before sharing it with everyone.
Thursday, 25 February 2010
Testing times
The last couple of weeks have been something of a challenge, which is part of why I haven't updated my blog.
It started with a standard review appointment with my asthma consultant, who described my asthma to a medical student as 'terrible' and then made the usual comment that there's nothing more we can do at the moment. In a last ditch attempt to try anything we thought we'd maybe give tiotropium a go seeing as it's probably the last thing we haven't tried to date. This would have to be in place of the ipratropium nebules as they're very closely related drugs and there's a significant increase of risk of side-effects such as glaucoma if used in conjunction. It was a gamble, but a gamble worth taking. It didn't work out though, and although it would've been nice to have been able to cut down on the time I spend using the nebuliser, and the generally quantity of medication I take, my lungs didn't like the change and began to go downhill. My consultant has gone on holiday for a couple of weeks so wasn't around when I called his secretary to explain the situation and get the official say-so to go back to my old meds, but she spoke to one of my consultant's colleagues and they've given that say-so.
The day after my appointment with the asthma consultant I had an appointment with my POTS consultant at the falls and syncope service. I had a huge number of questions for Dr N, and managed to get through most of them, although some of the time was taken up with questions to and from three medical students who were sitting in on the consultation. On the whole, I don't mind med students coming in, because they have to learn and they're going to learn best by having patient contact. There's been one occasion I can think of where I've requested a preference not to have a student present, but that was because I'd wanted to discuss a sensitive issue that might have needed some explanation to the student, and I didn't want to go into it. Anyway, this time I had no objection and it meant that the three third years learnt a little about POTS. As I'm still passing out a lot Dr N decided that it'd be a good idea to get a tilt table test done, and before I knew it I found myself being strapped to a bed and tilted to an angle of 70 degrees. The plan had been to leave me for thirty minutes and if I didn't pass out by then they'd give me GTN (this is supposed to make you more sensitive to fainting, or something), but I'm allergic to nitrites so I can't have GTN so they changed the plan to a forty minute test without GTN. After 6 minutes I was feeling really nauseous. After 13 minutes I was throwing up and almost out. At 13 1/2 minutes the test was stopped. In addition to the POTS diagnosis they've now also given me the vague diagnosis of vasovagal syncope, which basically means that I faint, so it's not a very informative diagnosis really. However, because I didn't actually reach the point of passing out, but was only very, very close to it, Dr N wants to repeat the tilt table test. I'm not looking forward to it, especially as, to use Dr N's description, next time they'll 'put me in a hoover bag'!!! Er, great... Apparently this will reduce the test time from 40 minutes to 20 minutes, but to be honest I can't see the use in this seeing as I only lasted 13 minutes last time.
The following few days were doctor-/appointment-free and on the Monday evening W and I went to the theatre to a fantastic production of Pride and Prejudice at Theatre Royal. It was great fun, and the company (Theatre Royal Bath Productions) really brought out the humour in the story. We both really enjoyed it, but it turned out that we also both picked up a cold while we were there. I had to do what I could to ignore feeling coldy and grotty and the ensuing lung-grumpiness as I had another late essay to write for my OU course. I eventually got it done and sent off into the ether towards my tutor on the evening of Wednesday last week, but then proceeded to feel grottier with the cold. Miserable.
The next day I had an appointment for a sight test at the optician - the 'usual' optician, not the hospital optician I go to every six months. My prescription has changed again (though not by much), but I'm not getting new lenses just at the moment because the optician says she thinks my cataracts are now at a stage where they need removing. Things have been getting cloudier/mistier and the light scattering has been getting worse, so I knew that the cataracts were getting denser even if maybe not all that much bigger. I know the cataracts themselves are still pretty small, but they're dead central so interfere with vision significantly, and I've been aware that the one in the right eye is definitely getting worse. The optician wrote a letter to my GP suggesting a re-referral to the opthalmologist and I now have an appointment with them for 1st April. The thing is that last time i saw the opthalmologist she said that she'd be extremely reluctant ever to operate on my cataracts because of the risk of the anaesthetic on my asthma. She said that there's even a risk using local anaesthetic so really wouldn't be keen to do the op. But I'm not keen on going blind, and personally I'd rather take the risk, especially as I know that Dr H (my asthma cons) can give advise and be involved if need be. I have a whole host of thoughts and emotions running through me with this ... I don't want to go blind so I want the cataract removal op; I don't want to die from asthma so I'm nervous about the risks to my lungs; I don't want to have cataracts in the first place and I slightly resent the steroids I take for my asthma that have caused them in the first place; I don't relish the idea of any kind of surgery, full stop; I'd love the world to be clearer again and know that once the cataracts are removed then there's almost zero chance of them returning (the only possibility would be if they didn't remove every little scrap of lens). I'm nervous, impatient, anxious, excited (at the prospect of clear sight, not at having surgery!). Very mixed up.
At around 3am I woke up with my right eye stuck together and I immediately knew that I'd picked up conjunctivitis, most likely from the optician. I got up, gave my eyes a bit of a clean so that I was a little more comfortable, but they still continued to dribble their nasty gunk, and as the night went on the gunk got gunkier and my eyes got sorer. The right was definitely worse than the left, which would fit in with the optician having fiddled more with my right eye as she had a good look at the cataract in that eye. I phoned the optician in the morning just to make them aware, rather than to complain, but they were ever so defensive saying that they'd had no other complaints and it was 'probably just a coincidence'. I'm still sure I got it from there, and I wasn't really complaining, just telling them so they could make sure their equipment/opticians are clean and infection-free. Anyway, I ended up heading up to the walk-in centre for some chloramphenicol eye drops, so that was another medical contact. Drops in hand (well, drops in eyes really ;oP ) I went home to gather my things before taking myself up to Edinburgh for the weekend. I was staying with Mum, getting a bit of much-needed TLC and was planning on meeting up with a couple of OU friends, one of whom I'd never met before and was visiting Edinburgh from Portland for the weekend.
It was lovely to get some parental cossetting, especially while I was feeling so yuck with the cold, conjunctivitis and increasing lung-grumpiness. The lung-grumpiness was getting worse though and I started to produce pond life so on Sunday morning I ended up phoning NHS24. I needed some antibiotics before things got too nasty. I have to say that both the people I spoke to on NHS24 were very good and responsive, taking my medical history on-board with appropriate significance. Within half an hour I had an appointment with the out of hours doctor at the OPD at Edinburgh Royal Infirmary, so Mum, J (step-dad), and I got ourselves together and took ourselves off to the ERI. Again, I was impressed by the thoroughness of the doc (an experienced GP and out of hours doc), and appreciated his concern and reluctance to just prescribe some antibiotics and send me on my way, even though I didn't want to end up round the corner in A&E. The doc had taken a history from me and was subsequently aware of my potential to crash with my asthma, so he phoned through the medical registrar, explained my situation and discussed the best plan of action. He then called for a porter and I was trundled round to Immediate Care in A&E, where I was examined, x-rayed, jabbed with a cannula, had bloods taken, and nebulisers given. All the staff were lovely, and the doctor was very on the ball, and clearly concerned, though I think more by my history than by my presentation. He said that at that point I was 50/50 for admission, and I think that I had I not had my parents with me then he would definitely have admitted me. Even with them there he was very reluctant to let me go, and it was only after a few hours of observation that I was allowed home. I didn't feel great, but I didn't feel as though I needed to be in hospital, and with antibiotics now in hand things should settle. Settling grumpy lungs can be a bit of a long job though and they're still not very happy. In fact, today I've been barking like a seal :o(
I was back at the doctors' surgery yesterday too, because out of nowhere at around 9pm on Tuesday evening I started having intermittent waves of excruciating stabbing pain in my stomach/liver area. The GP made sure it wasn't pleurisy, which she said in my case is considered an emergency (!). Thankfully it isn't that, but I didn't think it was anyway. Other than that though she seemed a little uncertain as to what it is, but options include an ulcer (which would probably be medication induced), chest wall inflammation, or muscular (but it doesn't feel muscular). The plan of action is a passive wait and see if it settles on its own, and she's given me some pain killers. It is a little better than it was, though it hasn't gone yet and I'm dosing myself up when I can. I'll see how it goes over the weekend, and I'm hoping that it'll be much improved by Monday, whatever it is. I've had an ulcer from some of my meds in the past, and although the pain is presenting differently, it's a similar type of pain, so I wonder if this is another ulcer. Even if it is it could heal itself so I'll see, and I'll hope.
Today has been a pyjama day. I've done very little, barked like a seal, wheezed a fair bit, done an hour and a half's study, felt guilty about not having done more study, but not guilty enough to actually get productive. I will get down to it. I have to. I've got several weeks to catch up on, but on a positive note, that essay I mentioned earlier, I got 88% for!
It started with a standard review appointment with my asthma consultant, who described my asthma to a medical student as 'terrible' and then made the usual comment that there's nothing more we can do at the moment. In a last ditch attempt to try anything we thought we'd maybe give tiotropium a go seeing as it's probably the last thing we haven't tried to date. This would have to be in place of the ipratropium nebules as they're very closely related drugs and there's a significant increase of risk of side-effects such as glaucoma if used in conjunction. It was a gamble, but a gamble worth taking. It didn't work out though, and although it would've been nice to have been able to cut down on the time I spend using the nebuliser, and the generally quantity of medication I take, my lungs didn't like the change and began to go downhill. My consultant has gone on holiday for a couple of weeks so wasn't around when I called his secretary to explain the situation and get the official say-so to go back to my old meds, but she spoke to one of my consultant's colleagues and they've given that say-so.
The day after my appointment with the asthma consultant I had an appointment with my POTS consultant at the falls and syncope service. I had a huge number of questions for Dr N, and managed to get through most of them, although some of the time was taken up with questions to and from three medical students who were sitting in on the consultation. On the whole, I don't mind med students coming in, because they have to learn and they're going to learn best by having patient contact. There's been one occasion I can think of where I've requested a preference not to have a student present, but that was because I'd wanted to discuss a sensitive issue that might have needed some explanation to the student, and I didn't want to go into it. Anyway, this time I had no objection and it meant that the three third years learnt a little about POTS. As I'm still passing out a lot Dr N decided that it'd be a good idea to get a tilt table test done, and before I knew it I found myself being strapped to a bed and tilted to an angle of 70 degrees. The plan had been to leave me for thirty minutes and if I didn't pass out by then they'd give me GTN (this is supposed to make you more sensitive to fainting, or something), but I'm allergic to nitrites so I can't have GTN so they changed the plan to a forty minute test without GTN. After 6 minutes I was feeling really nauseous. After 13 minutes I was throwing up and almost out. At 13 1/2 minutes the test was stopped. In addition to the POTS diagnosis they've now also given me the vague diagnosis of vasovagal syncope, which basically means that I faint, so it's not a very informative diagnosis really. However, because I didn't actually reach the point of passing out, but was only very, very close to it, Dr N wants to repeat the tilt table test. I'm not looking forward to it, especially as, to use Dr N's description, next time they'll 'put me in a hoover bag'!!! Er, great... Apparently this will reduce the test time from 40 minutes to 20 minutes, but to be honest I can't see the use in this seeing as I only lasted 13 minutes last time.
The following few days were doctor-/appointment-free and on the Monday evening W and I went to the theatre to a fantastic production of Pride and Prejudice at Theatre Royal. It was great fun, and the company (Theatre Royal Bath Productions) really brought out the humour in the story. We both really enjoyed it, but it turned out that we also both picked up a cold while we were there. I had to do what I could to ignore feeling coldy and grotty and the ensuing lung-grumpiness as I had another late essay to write for my OU course. I eventually got it done and sent off into the ether towards my tutor on the evening of Wednesday last week, but then proceeded to feel grottier with the cold. Miserable.
The next day I had an appointment for a sight test at the optician - the 'usual' optician, not the hospital optician I go to every six months. My prescription has changed again (though not by much), but I'm not getting new lenses just at the moment because the optician says she thinks my cataracts are now at a stage where they need removing. Things have been getting cloudier/mistier and the light scattering has been getting worse, so I knew that the cataracts were getting denser even if maybe not all that much bigger. I know the cataracts themselves are still pretty small, but they're dead central so interfere with vision significantly, and I've been aware that the one in the right eye is definitely getting worse. The optician wrote a letter to my GP suggesting a re-referral to the opthalmologist and I now have an appointment with them for 1st April. The thing is that last time i saw the opthalmologist she said that she'd be extremely reluctant ever to operate on my cataracts because of the risk of the anaesthetic on my asthma. She said that there's even a risk using local anaesthetic so really wouldn't be keen to do the op. But I'm not keen on going blind, and personally I'd rather take the risk, especially as I know that Dr H (my asthma cons) can give advise and be involved if need be. I have a whole host of thoughts and emotions running through me with this ... I don't want to go blind so I want the cataract removal op; I don't want to die from asthma so I'm nervous about the risks to my lungs; I don't want to have cataracts in the first place and I slightly resent the steroids I take for my asthma that have caused them in the first place; I don't relish the idea of any kind of surgery, full stop; I'd love the world to be clearer again and know that once the cataracts are removed then there's almost zero chance of them returning (the only possibility would be if they didn't remove every little scrap of lens). I'm nervous, impatient, anxious, excited (at the prospect of clear sight, not at having surgery!). Very mixed up.
At around 3am I woke up with my right eye stuck together and I immediately knew that I'd picked up conjunctivitis, most likely from the optician. I got up, gave my eyes a bit of a clean so that I was a little more comfortable, but they still continued to dribble their nasty gunk, and as the night went on the gunk got gunkier and my eyes got sorer. The right was definitely worse than the left, which would fit in with the optician having fiddled more with my right eye as she had a good look at the cataract in that eye. I phoned the optician in the morning just to make them aware, rather than to complain, but they were ever so defensive saying that they'd had no other complaints and it was 'probably just a coincidence'. I'm still sure I got it from there, and I wasn't really complaining, just telling them so they could make sure their equipment/opticians are clean and infection-free. Anyway, I ended up heading up to the walk-in centre for some chloramphenicol eye drops, so that was another medical contact. Drops in hand (well, drops in eyes really ;oP ) I went home to gather my things before taking myself up to Edinburgh for the weekend. I was staying with Mum, getting a bit of much-needed TLC and was planning on meeting up with a couple of OU friends, one of whom I'd never met before and was visiting Edinburgh from Portland for the weekend.
It was lovely to get some parental cossetting, especially while I was feeling so yuck with the cold, conjunctivitis and increasing lung-grumpiness. The lung-grumpiness was getting worse though and I started to produce pond life so on Sunday morning I ended up phoning NHS24. I needed some antibiotics before things got too nasty. I have to say that both the people I spoke to on NHS24 were very good and responsive, taking my medical history on-board with appropriate significance. Within half an hour I had an appointment with the out of hours doctor at the OPD at Edinburgh Royal Infirmary, so Mum, J (step-dad), and I got ourselves together and took ourselves off to the ERI. Again, I was impressed by the thoroughness of the doc (an experienced GP and out of hours doc), and appreciated his concern and reluctance to just prescribe some antibiotics and send me on my way, even though I didn't want to end up round the corner in A&E. The doc had taken a history from me and was subsequently aware of my potential to crash with my asthma, so he phoned through the medical registrar, explained my situation and discussed the best plan of action. He then called for a porter and I was trundled round to Immediate Care in A&E, where I was examined, x-rayed, jabbed with a cannula, had bloods taken, and nebulisers given. All the staff were lovely, and the doctor was very on the ball, and clearly concerned, though I think more by my history than by my presentation. He said that at that point I was 50/50 for admission, and I think that I had I not had my parents with me then he would definitely have admitted me. Even with them there he was very reluctant to let me go, and it was only after a few hours of observation that I was allowed home. I didn't feel great, but I didn't feel as though I needed to be in hospital, and with antibiotics now in hand things should settle. Settling grumpy lungs can be a bit of a long job though and they're still not very happy. In fact, today I've been barking like a seal :o(
I was back at the doctors' surgery yesterday too, because out of nowhere at around 9pm on Tuesday evening I started having intermittent waves of excruciating stabbing pain in my stomach/liver area. The GP made sure it wasn't pleurisy, which she said in my case is considered an emergency (!). Thankfully it isn't that, but I didn't think it was anyway. Other than that though she seemed a little uncertain as to what it is, but options include an ulcer (which would probably be medication induced), chest wall inflammation, or muscular (but it doesn't feel muscular). The plan of action is a passive wait and see if it settles on its own, and she's given me some pain killers. It is a little better than it was, though it hasn't gone yet and I'm dosing myself up when I can. I'll see how it goes over the weekend, and I'm hoping that it'll be much improved by Monday, whatever it is. I've had an ulcer from some of my meds in the past, and although the pain is presenting differently, it's a similar type of pain, so I wonder if this is another ulcer. Even if it is it could heal itself so I'll see, and I'll hope.
Today has been a pyjama day. I've done very little, barked like a seal, wheezed a fair bit, done an hour and a half's study, felt guilty about not having done more study, but not guilty enough to actually get productive. I will get down to it. I have to. I've got several weeks to catch up on, but on a positive note, that essay I mentioned earlier, I got 88% for!
Monday, 1 December 2008
Nothing new
In the past week I have had three hospital appointments, a trip to the walk-in centre, and I have a doctor's appointment this afternoon. Each appointment has been one of disappointment.
Last Tuesday I went to see the psychiatrist, which was the least disappointing/traumatic of my medical visits. Dr G is okay, but he often has his own agenda, which isn't actually all that great for a psychiatrist, and the result of this is that I have to try to cram in what I want to say whenever I get a chance. A lot of what I wanted to say last week, and on many of my recent appointments with Dr G, has been related to my asthma and more specifically my most recent admission. The problem is that Dr G doesn't seem to know what to say to me about any of this, and to be honest I don't expect him to say anything, just listen, which as I've already said he's not that great at. He wants to help. He wants to say something that'll make me feel better. He wants to be able to do something. He offers me medication, but there is no point in taking more antidepressants largely because I'm not depressed. Yes I've been stressed and been a bit traumatised, but I'm not depressed. He agrees and I don't take a prescription. There is nothing Dr G can do or say. The appointment finishes and I go home.
On Friday I had an appointment with the opthalmologist and optician at one of the hospitals. This is in part to check my coloured contact lens that artificially contracts my left pupil as it doesn't do it on its own. I have a condition in my left eye called Holmes Adies Pupil which, amongst other things, means that the pupil doesn't contract so I get dazzled by light, which can be uncomfortable. I know that there's nothing that can be done for this, and it's not life threatening in any way. In fact all the literature says that it is of little consequence, but this is a medical view when in reality the discomfort of bright light isn't nice and the fact that the lens in my eye doesn't accommodate is frustrating, because it interferes with my vision. My left eye doesn't focus well so things are often very blurred in that eye. Over time my brain got somewhat used to this and my right eye compensates to some extent. However, my vision is further compromised by cataracts that began to develop a couple of years ago. They're only small at the moment, but they're right in the centre of the lenses in my eyes, and the one in my right eye is bigger than the one in the left. I've written before about the prospects of this for me, but to say again, the opthalmologist is extremely reluctant to operate at any time to remove the cataracts because of my lungs. Most cataracts are removed under local anaesthetic, but apparently there's still a risk that a local anaesthetic would affect my lungs, so the consequence is that they won't do anything and I have the prospect of blindness ahead of me unless I can convince me asthma consultant to speak to the opthalmologist and convince her to remove the cataracts eventually.
Now on Friday afternoon I went to the local walk-in centre for the very silly thing of an infected toe. I hadn't planned on going there and was going to see if I could just sort things out by regularly soaking my foot in hot, salty water, but as Friday progressed my whole toe started to ache so I thought I'd better get it seen to, especially as I'm MRSA positive. So I went to the walk-in/hobble-in centre and sure enough was told that it's infected and I needed antibiotics, but as I'm on methotrexate the nurse practitioners who run the centre aren't licenced to prescribe antibiotics for me. I came away with a toe dressing, the phone number of the urgent doctors service in case it got worse over the weekend, the suggestion that I see my own GP on Monday and the news that there's nothing the walk-in centre can do for me. Oh great.
This morning I have been to see my asthma consultant, which is always the same - a chat, a check to see that things aren't deteriorating (too much) and confirmation that nothing can be done to help. Today was harder to take than previous appointments with Dr H though as he's decided to take me off methotrexate. There are some serious potential side-effects, such as lung fibrosis, liver failure and kidney failure. Thankfully I haven't suffered any of these so far, but the risk is on-going, my consultant has been concerned about the potential of them, and he has now decided that the risks aren't out-weighed by the limited benefit I was getting from the drug. It's not altogether unexpected, but I have been so upset today. I was put on methotrexate as a last hope of anything helping and now that hope has been taken from me. There is nothing else left to try, and again Dr H has said that we have to wait for science to catch up with my disease and try to hope that I live that long. You know you've hit a brick wall when all the consultant can offer is a prescription of hope, but at the same time removes the medication that supplied the hope.
Last Tuesday I went to see the psychiatrist, which was the least disappointing/traumatic of my medical visits. Dr G is okay, but he often has his own agenda, which isn't actually all that great for a psychiatrist, and the result of this is that I have to try to cram in what I want to say whenever I get a chance. A lot of what I wanted to say last week, and on many of my recent appointments with Dr G, has been related to my asthma and more specifically my most recent admission. The problem is that Dr G doesn't seem to know what to say to me about any of this, and to be honest I don't expect him to say anything, just listen, which as I've already said he's not that great at. He wants to help. He wants to say something that'll make me feel better. He wants to be able to do something. He offers me medication, but there is no point in taking more antidepressants largely because I'm not depressed. Yes I've been stressed and been a bit traumatised, but I'm not depressed. He agrees and I don't take a prescription. There is nothing Dr G can do or say. The appointment finishes and I go home.
On Friday I had an appointment with the opthalmologist and optician at one of the hospitals. This is in part to check my coloured contact lens that artificially contracts my left pupil as it doesn't do it on its own. I have a condition in my left eye called Holmes Adies Pupil which, amongst other things, means that the pupil doesn't contract so I get dazzled by light, which can be uncomfortable. I know that there's nothing that can be done for this, and it's not life threatening in any way. In fact all the literature says that it is of little consequence, but this is a medical view when in reality the discomfort of bright light isn't nice and the fact that the lens in my eye doesn't accommodate is frustrating, because it interferes with my vision. My left eye doesn't focus well so things are often very blurred in that eye. Over time my brain got somewhat used to this and my right eye compensates to some extent. However, my vision is further compromised by cataracts that began to develop a couple of years ago. They're only small at the moment, but they're right in the centre of the lenses in my eyes, and the one in my right eye is bigger than the one in the left. I've written before about the prospects of this for me, but to say again, the opthalmologist is extremely reluctant to operate at any time to remove the cataracts because of my lungs. Most cataracts are removed under local anaesthetic, but apparently there's still a risk that a local anaesthetic would affect my lungs, so the consequence is that they won't do anything and I have the prospect of blindness ahead of me unless I can convince me asthma consultant to speak to the opthalmologist and convince her to remove the cataracts eventually.
Now on Friday afternoon I went to the local walk-in centre for the very silly thing of an infected toe. I hadn't planned on going there and was going to see if I could just sort things out by regularly soaking my foot in hot, salty water, but as Friday progressed my whole toe started to ache so I thought I'd better get it seen to, especially as I'm MRSA positive. So I went to the walk-in/hobble-in centre and sure enough was told that it's infected and I needed antibiotics, but as I'm on methotrexate the nurse practitioners who run the centre aren't licenced to prescribe antibiotics for me. I came away with a toe dressing, the phone number of the urgent doctors service in case it got worse over the weekend, the suggestion that I see my own GP on Monday and the news that there's nothing the walk-in centre can do for me. Oh great.
This morning I have been to see my asthma consultant, which is always the same - a chat, a check to see that things aren't deteriorating (too much) and confirmation that nothing can be done to help. Today was harder to take than previous appointments with Dr H though as he's decided to take me off methotrexate. There are some serious potential side-effects, such as lung fibrosis, liver failure and kidney failure. Thankfully I haven't suffered any of these so far, but the risk is on-going, my consultant has been concerned about the potential of them, and he has now decided that the risks aren't out-weighed by the limited benefit I was getting from the drug. It's not altogether unexpected, but I have been so upset today. I was put on methotrexate as a last hope of anything helping and now that hope has been taken from me. There is nothing else left to try, and again Dr H has said that we have to wait for science to catch up with my disease and try to hope that I live that long. You know you've hit a brick wall when all the consultant can offer is a prescription of hope, but at the same time removes the medication that supplied the hope.
Friday, 30 November 2007
Eye eye
One of the potential side-effects of having to take long-term high-dose oral steroids is cataracts. I developed these in both eyes a couple of years ago and now have to have them checked out at the hospital every six months. I've been for my appointment with the hospital optician this afternoon, having just got home, and I don't feel too wonderful about the situation. Now the cataracts aren't too bad at the moment, but I am aware of them and they do interfere with my sight a little. However, they're not yet at the stage of needing to be removed, even though they are slowly getting bigger. Last time I went to the hospital optician I was told that it's unlikely that any opthalmologist would operate on me because of my lungs, even with a local anaesthetic as there's still a risk. As you may be able to appreciate, this was rather upsetting as the prospect of going blind isn't great, especially when it's with something that can, in most people, be rectified relatively easily. Well, I saw a different optometrist today so I thought I'd check out her opinion on this matter, and was again upset by her confirming the unlikelihood of finding an opthalmologist that would be willing to remove my cataracts because of my asthma. She said that it's a matter of weighing up the risks, which is fair enough, but my question is what about over all quality of life? If/when the cataracts get to the stage where I can't drive then this will have serious implications on my mobility as I rely on my car for my independence, perhaps more so than many because of the mobility limitations my asthma imposes upon me. This, of course, is in addition to the life-changing situation of losing one's sight and the resulting isolation I imagine there to be. Oh, and it would mean that I would no longer be able to use my electric wheelchair (which I don't use all the time; only when I can't breathe enough to walk), therefore further reducing my mobility and independence. What of the emotional impact of all of that?
Another thing that the optometrist said was that the vitreous humour (the jelly-like stuff that sits behind the lens) in my eyes is thickening. She wasn't, however, at all forthcoming in what this means in terms of consequences or prognosis, other than it accounts for some of the large, black splodges I see. I'm the kind of person who deals with medical things by finding out as much as possible about them, what the possibilities are (positive and negative), what the diagnosis means, what the prognosis is, finding out how the affected body-part/-system works and then doesn't work, etc. So when I'm given half-information, such as that of the thickening in my vitreous humour, I begin to worry a little about what it means/doesn't mean for me, and when the giver of the news seems reluctant to give me more information I can feel as though things are being kept from me. Now it might be that it means very little and there are few consequences, and that the optometrist simply isn't telling me anything more because there's little to say, but it might be otherwise. I'll be looking things up online and finding out what I can for myself, so I will get back to you with what I learn in case you're interested.
Another thing that the optometrist said was that the vitreous humour (the jelly-like stuff that sits behind the lens) in my eyes is thickening. She wasn't, however, at all forthcoming in what this means in terms of consequences or prognosis, other than it accounts for some of the large, black splodges I see. I'm the kind of person who deals with medical things by finding out as much as possible about them, what the possibilities are (positive and negative), what the diagnosis means, what the prognosis is, finding out how the affected body-part/-system works and then doesn't work, etc. So when I'm given half-information, such as that of the thickening in my vitreous humour, I begin to worry a little about what it means/doesn't mean for me, and when the giver of the news seems reluctant to give me more information I can feel as though things are being kept from me. Now it might be that it means very little and there are few consequences, and that the optometrist simply isn't telling me anything more because there's little to say, but it might be otherwise. I'll be looking things up online and finding out what I can for myself, so I will get back to you with what I learn in case you're interested.
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