My dad has Lewy Body Dementia, but when I'm at the getting-lots-better stage of hospital admissions he often takes me out in my wheelchair for a breath of fresh air and general escape from the ward. However, this is quite an experience and something I've termed Extreme Wheelchairing.
On Thursday Dad took me to Paddy Freemans - the park directly opposite the hospital. I very nearly ended up in the pond. Dad was watching the ducks as he was pushing me along and he forgot not to steer me in the direction he was looking so I was rapidly heading towards the 'steps' that circle the pond. I was holding onto the oxygen cylinder so grabbing the breaks wasn't an easy task, and a certain amount of breath was used in raising my voice in a desperate kind of way until Dad realised where he was pushing me. I survived that only to have him nearly push me off the edge of the cliff into Jesmond Dene below. He was showing me the view, which was lovely (although I've seen it many times before I never tire of it), but I didn't want to become a part of that view. Again, there was a degree of desperation in my exclamation as my front wheels teetered over the edge of the cliff.
I went extreme wheelchairing again yesterday, but only within the hospital. We managed to take out a lady in the lift, which was rather mean as she had a chest drain in so can't have been feeling all that grand to start with. Dad then took me to the little coffee shop in the hospital W H Smith, which is the most wheelchair-unfriendly shop in the world with narrow aisles that the staff insist on making more impossibly narrow with boxes of things that ought to go on the shelves but they never get around to unpacking. It's horrendous. So we crashed into the crips aisle, ran over a woman in the random slippers and dog food (!!!) aisle, couldn't get down the magazine aisle, though that didn't stop Dad from trying, and smashed our way through to the till and coffee shop area, managing to swipe a hairbrush off the shelf with my wheel and not realising until I felt it as I tried to grab the breaks (almost dropping the oxygen cylinder in the process) as we crushed a bloke sitting at one of the coffee tables. Upon leaving, Dad tried to push me through a table and a chair until I suggested that he leave them in the shop and not push them all the way down the corridor in front of us - he just hadn't seen that they were there and attached to me. We came back to the ward relatively uneventfully, except for the close acquantance I made with the wall beside the huge double doors that were open but Dad still couldn't easily negotiate his way through, and a small crash into a porter with a wheelchair.
It really is quite an experience having someone with moderate dementia take you out in a wheelchair.
Saturday, 30 October 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.
Saturday, 9 October 2010
Briefly
Very briefly dropping by to say that I'm home :oD I was discharged on Thursday late afternoon, despite feeling as though I may have been starting with a chest infection. The CT1 (SHO as was) said that I could stay if I wanted to, but I was determined to come home if at all possible, so I have been allowed to escape providing I got in touch with either them or my GP if the chest infection warning signs got at all worse. I promised I would. And first thing on Friday morning I was phoning my GP surgery for an appointment as I was producing pondlife :o( I'm okay, but I'm lurgified, and that seems grossly unfair. However, I now have PLECs - Pond Life Extermination Capsules - aka antibiotics, so I'm hoping they'll do the trick. While I was seeing the GP I asked about a short course of furosemide to help the water retention, and she was okay with that. I have to have my bloods done anyway (to check thyroid function and a diabetes screen, because of the possible carpal tunnel syndrome), so she's going to add on a renal function screening, although she could see from tests I had done in hospital that they appear to be okay. She was lovely. I hate my body, and I hate having it examined, but I knew she had to assess the oedema for herself so I let her and she put me at ease, and I was able to show her that although I'm far too big anyway, the *huge* pockets of fluid are not normal. She agreed. She was gentle while she examined me, but she could also see how tender I am, so she has given me a week's course of furosemide to help alleviate things. I have to go back to see her next week, partly to see how things are regarding the fluid retention, and partly regarding the chest infection. I hate that I seem to spend most of my life in hospital and doctor waiting rooms, but it really helps when the medics I encouter are so lovely.
By the way, I have a story to tell about a spider, but I'll get back to you with that next time.
By the way, I have a story to tell about a spider, but I'll get back to you with that next time.
Thursday, 7 October 2010
Water balloon
I have swollen up with water retention again, pretty much as I did last time I was in, and like last time it's sore and uncomfortable and miserable. Unlike last time, the doc has been very reluctant to prescribe any meds to help relieve the water retention, so while I've been telling them for at least a week that I was starting to swell up, nothing has been done. I asked them for some furosemide, but I was told that nature would take its course. Nature refused to take its course. I asked again, but I was told to try to move around more and that would help. I moved around more, and walked on the spot in my room on my own for as long as I could comfortably go and for longer. Moving around more didn't help. I have continued to swell, and the fluid has gathered once again mostly around my hips and waist, and I feel like a balloon that's about to burst, and my skin is sore and stretched and nothing is comfortable. I asked again for some furosemide to help, but I was told that they were reluctant because I'm on so many meds already. I can understand that to a degree, but not when I'm so uncomfortable that I want to cry. And the stress built up, and the whole damn lot just got too much to contain, and the water burst out of my eyes in a torrent of tears and pleading, and desperation for something to help get rid of the swelling. I was told that in their opinion my feet looked a little better today. That's because it's all around my middle and my hips and my waist...except that actually it's all still there in my feet too, and I hurt and I'm bursting, and my body is going to pop and my skin is going to snap, and I'm sore, and I'm crying, and I don't understand why they won't give me something to help. I was given furosemide last time and it did me no harm; in fact it helped, as it ought. Why so different this time? What is the reluctance? What is the problem? Why don't they give me a reason? Apparently I have to understand that there's a hierarchy of doctors and that if the more senior doctor doesn't want to prescribe the meds I'm after (for whatever secret reason) then the junior doctor will not take any initiative in doing what is actually necessary for the patient's welfare. Okay, so I understand there's a hierarchy. I understand that junior medics have to play by the rules of their seniors. I don't have to accept the lack of reasoning for the 'action' being/not being taken. I don't have to agree with the decision. They don't seem to have to see it from the patient's point of view; and God forbid that they should see real patient distress in discomfort as reasonable. And no, this is not my usual experience, and no this is not my all-encompassing opinion of these people and their attitudes - it is my experience of them in this instance, in this situation, when I'm sore and stretched, and I'm tired and fed up, and I'm drained by the cycle of illness. It may 'only' be fluid retention, but it's just all a bit too much, and sometimes it's the seemingly small things that tip the balance from coping to emotional melt-down. Today I reached melt-down, and I cried, and I cried, and I lay in the darkened room, and I cried, and I hid under the sheets and I threw my dressing gown over my head, and I cried. Then I cried some more, and I felt wretched and I wanted the world to disappear, or me to disappear, and I wanted to stop hurting, and I still want to stop hurting. And I want illness not to be a part of my life, the major part of my life, the pivot of my life. I want to be normal, not NFB - Normal For Becky. And I'm fed up and miserable and wallowing in self-pity. And I cry and I weep and I feel lonely and miserable and as though nobody in the whole world possibly understands what any of it is like, particularly not these doctors who's knowledge of all these things is most likely through the pages of their text books rather than personal experience. And today I feel like an experiment that's gone wrong, but is still rather interesting to watch in some odd way. I don't want to be an experiment. And I have cried, and I have exhausted myself, and I have cried some more, and I have wept through cyberspace to some friends, and they've let it be okay to be miserable. And I've covered my face in snot because I haven't got any tissues, and my friends haven't been disgusted by the snot. No, they've found a use for it - use it as glue and throw glitter on it. Make the mess a pretty mess. And I'm still enormously full of water and feeling like I'm going to burst, and I'm hurting and I'm sore, but I'm loved by my friends, and I'm calmed by my friends, and I'm held by their cyber hugs in a real warmth and the glow of cyber glitter and cyber snot, and the mess is still as messy as ever, but it doesn't matter because I'm held by their love when everything has just got too much.
The nurse weighed me and it was found that I had eleven pounds of water retention, so now the doctor believes that I might actually be feeling as sore and uncomfortable as I was telling her I am. I was given one tablet of furosemide, but I don't know if this is just for today or if I will get it again tomorrow and some to take home. What I do know is that there's no way that I've got rid of 11lbs of oedema this afternoon, and I still hurt, and I'm still stretched, and I'm still a water balloon. But I hope that tomorrow I will get another pill to help wring the water from my over-stretched body ... and if I don't I will have to hope that the water in my body can somehow all be released through my tear ducts as that seems to be the only other way that any fluid is leaving my body.
And maybe this doesn't make any sense to anyone but me. And yes, it's a ramble and a mess, but today I am a ramble and a mess. And sometimes life is messy and it can't be written about in a neat and tidy way with pretty language and sentences that flow easily. Sometimes it's all too much. Sometimes bubbles burst.
And then my vicar came and he brought me communion, and it's so long since I had communion because it's so long since I've been to church, because so much of the time I feel too ill to get there or be there once I've got there. But each day I've been here I've curled up with God, snuggled under his blanket and poured out all my prayers of thanks and confession and supplication. So communion feels good. No, communion feels wonderful. Communion brings me a little peace and a message to 'be still and know that I am God,' so I am still and I know that He is God, and I rest with him a while. Then I do some cross-stitch to distract from the discomfort of my water-filled body and the discomfort of my crying mind, and it turns out that a combination of communion and cross-stitching Mr Tickle (and have one of your friends tell you that he's going to call you Polly from now on) can actually help emotional melt-down.
The nurse weighed me and it was found that I had eleven pounds of water retention, so now the doctor believes that I might actually be feeling as sore and uncomfortable as I was telling her I am. I was given one tablet of furosemide, but I don't know if this is just for today or if I will get it again tomorrow and some to take home. What I do know is that there's no way that I've got rid of 11lbs of oedema this afternoon, and I still hurt, and I'm still stretched, and I'm still a water balloon. But I hope that tomorrow I will get another pill to help wring the water from my over-stretched body ... and if I don't I will have to hope that the water in my body can somehow all be released through my tear ducts as that seems to be the only other way that any fluid is leaving my body.
And maybe this doesn't make any sense to anyone but me. And yes, it's a ramble and a mess, but today I am a ramble and a mess. And sometimes life is messy and it can't be written about in a neat and tidy way with pretty language and sentences that flow easily. Sometimes it's all too much. Sometimes bubbles burst.
And then my vicar came and he brought me communion, and it's so long since I had communion because it's so long since I've been to church, because so much of the time I feel too ill to get there or be there once I've got there. But each day I've been here I've curled up with God, snuggled under his blanket and poured out all my prayers of thanks and confession and supplication. So communion feels good. No, communion feels wonderful. Communion brings me a little peace and a message to 'be still and know that I am God,' so I am still and I know that He is God, and I rest with him a while. Then I do some cross-stitch to distract from the discomfort of my water-filled body and the discomfort of my crying mind, and it turns out that a combination of communion and cross-stitching Mr Tickle (and have one of your friends tell you that he's going to call you Polly from now on) can actually help emotional melt-down.
Monday, 4 October 2010
Toilet humour
I pressed the bell to call the nurse to bring me the commode. Commode brought. Marvellous. I sat down and did a wee (I'm sure you wanted to know that ;oP ). Marvellous relief. I realised then that the toilet roll was on the other side of the room. Bugger. I had to negotiate my way around the table, the chair, the bed, the oxygen tubing, the drip stand, the computer wire, the bin, my shoes, and the wheelchair, all with my pyjama trousers around my ankles, in order to get to the damned toilet roll. And then, of course, I had to do the whole thing again in reverse whilst keeping hold of the toilet roll. And of course this was the time that my blood pressure decided to drop again and I very nearly ended up head-first in the commode pan with wires and leads and trousers wrapped around my ankles. Luckily I managed to avoid giving myself a wee facial, but this wasn't my finest hour, it has to be said.
Saturday, 2 October 2010
Plumbed in and switched on
It's a wee while since I last posted, when I was only a few days away from getting my new permanent plumbing in the form of a portacath. I was a tad nervous about the op, but Dr G gave me a small amount of medication to relax me so that I wasn't really bothered about what was going on, and that worked a treat. Before the whole thing started I had to have a single (but rather large) injection of a powerful antibiotic to ensure that the MRSA I carry doesn't infect the surgery wound, and this of course meant getting an IV line in, but seeing as I was getting the portacath put in because getting IV access in me is very difficult these days, it was not the easiest thing to do and the ward sister who was doing it said she could see why I was having the port fitted. Anyway, she eventually got access, and tentatively gave me the meds - teicoplanin - just in case I were to have an allergic reaction to it. Dr G was fairly confident that I wouldn't, but they can't be 100% sure until it's proved either way. Thankfully all went well and an hour or so later I was in theatre. I was given some local anaesthetic and then Dr G started the procedure, which at first I couldn't feel anything of, but then suddenly could as he pushed his finger through my chest muscles to make a hole for the portacath to sit in. It hurt. A lot. I managed not to say anything, but the pained expression clearly showed on my face and I was quickly given some more local anaesthetic. After that there was just a bit of pushing and prodding, and slightly weird feelings on the inside as the catheter bit of the portacath was pushed inside and assessed for length. At first it was all a bit odd and I wondered if I'd just get used to the feeling of the catheter inside my vein, but shortly after Dr G attached the port bit to the catheter bit he decided that the catheter bit was too long, so he pulled it a little way out, cut a smidgen off, and all of a sudden all weird sensation disappeared. The portacath was sewn into place, my skin was pulled together and stuck together with industrial-strength steristrips, a dressing was put over the whole lot and I was taken back to the ward. I was in theatre for perhaps an hour and a half - a little longer than they'd originally thought it'd be - and then I had an x-ray to check that all was okay and there hadn't been any complicating lung collapse or the likes. All clear, a little rest on the ward, and then I was free for my mum and step-dad to take me home. Marvellous! It was a little sore for a few days, but you don't expect to be pain free when you've had a man come at your chest with a knife, push his finger through your chest muscles, and then insert a piece of metal with a plastic tail into you, do you? It wasn't awful though and a regular combination of codeine and paracetamol settled it fairly well.
A little over a week later and I was at the GP surgery because I've been getting neuropathy in my hands. The doc examined me and has decided that I most likely have carpal tunnel syndrome :o( and she's referring me to plastics, which seems a bit odd as you'd expect neurology to deal with nerves etc, but apparently it's plastics who 'do' carpal tunnel syndrome. I'm told they'll do a nerve conduction test (whatever that might be), and if it tests positive then the likely outcome is a small operation to reduce the pressure on the offending nerve - the medial nerve, I think. So yes, that's why I went to the GP, but after we'd covered that she asked, 'So, can I ask? How's you're breathing?' Seeing as I couldn't speak in full sentences it would've been foolish to try to persuade her that I was okay, so I came clean and said that it wasn't great, and that yes, I was had deteriorated a little since I saw one of the other GPs two weeks previously. She had a listen to my lungs. She wasn't very impressed. Actually she looked a little scared, but she was an F2 trainee GP so perhaps hasn't come across an awful lot of awful asthmatics. She left the room and got her supervising GP - Dr Cn - who knows me very well. Now he's seen me a lot worse, but he wasn't happy with me either and both 'strongly recommended' that I go to hospital. I conceded. To be honest I was tired of the struggle that had been getting worse over recent times, and while I was at the surgery they got through to the ward and arranged a bed for me. Now, as is my wont, I almost always have something much more pressing to do than immediately go to hospital, and this time it was that I needed to get home to let the man from the council come in to check the electrics of the new ventilation system. It was supposed to have been done the previous week, but I'd had to cancel it as the appointment clashed with my portacath operation, and suddenly it seemed the worst thing in the world to let him down and not be in at the re-arranged time. The docs were a little confused as to my insistence that this was more important than getting to hospital, but Dr Cn does at least know my strange ways when I'm ill, and decided that I was safe enough to do this. As it turned out, the ward didn't have a bed until 1pm anyway (and it was currently around 10.50am) so I'd have been hanging around the surgery for ages. I was better off at home where I could gather my hospital bag, my meds, sort out the cat, and, of course, let the man from the council do the checking he needed to do.
I went home. I was okay. Well, I was sort of okay, in a kind of Becky-ish way. I texted W to let her know what was happening, and she wasn't surprised to hear that I was being admitted as she'd seen me just 36 hours previously and was concerned. She came right over and waited with me until it was time to come up to the hospital ... although actually we had to wait a little while as W's lungs were naff too and she needed to nebulise before she could drive me up to the hospital.
When I got to the ward I was still in that 'not too bad for Becky' kind of state, but as seems to happen sometimes when I've been deteriorating over a while and then get to somewhere 'safe' to splat, I did then splat and ended up quite poorly :o( We'd been hoping not to have to use my new plumbing quite so soon, but it wasn't long before it became evident that it was going to be put to use. But oh my word, how amazing! It's fantastic! No pain. No farting around with endless cannulae. No panic while trying to get a needle into a vein that doesn't want to be stabbed or have a needle put into it. No hassle. Just get the technique right, plug me in and set me going! Amazing! Wonderful! Awesome! And no hassle since, either. No problems with the lines stopping working, or leaking, or giving up, or getting caught and being pulled out. Nothing. Just straightforward, continual clear running. Huge relief. It's the best thing ever! Can you tell that I quite like it? ;oP So yes, while it was unfortunate that it was needed so soon after being implanted it has made that little bit of hospital life so much easier. However, the night wasn't easy and I was really quite ill. My blood gases were a bit of a mixed bag, with my pO2 being okay, but my pCO2 being a little too high for comfort, and that's a concern. That's the one that indicates how tired you're getting, and rather than coming down it was getting higher. Thankfully I managed to avoid ITU, although the outreach team did come to see me several times over the next several days to keep an eye on me and to keep reassessing whether or not I needed to be transferred to ITU. I don't like it there though and will do all I can to stay up on the ward. Anyway, I avoided it :o)
The night was a long night; a breathless and scary night. The registrar who was on call was worried, and although she'd gone home at about 1am she kept phoning the ward to see how I was, and at about 5am she said she was too worried, was giving up on sleep and coming in to be with me. Bless her. I was utterly exhausted, but still just about holding my own, and then things gradually started to ease, and eventually I fell asleep for a short time, although breathing remained hard work for the rest of the day, the following night and into the next morning. And then I slept. And I slept. And I slept. And then I slept some more. And then I started to feel a little bit more human although still very tired.
We started to tentatively reduce the aminophylline infusion from 50ml/hr to 40ml/hr, and that seemed to go okay, so 24 hours later we reduced it again to 20ml/hr. That started off okay, but then I woke up in the middle of the night unable to breathe and back at square one, with rising pCO2 again, ineffective nebulisers, ITU back up here for 3 hours and outreach keeping returning to check on me. I felt awful. I was scared. I was exhausted. I would've cried if I'd had the energy or the breath, but I had neither. I prayed and I prayed, and I texted my friends asking them for prayer too, and my friends texted back with both prayer and other support, keeping me sane in the scariness of it all. I think the medical staff probably find it odd that I often text when I'm really ill, but it's such a lonely, isolated time, and there's so much going round in my head that I'm not able to speak as I don't have the breath, but which I can say in text with ease. And wherever they are in the country, my friends have been there for me and sat with me in the dark at the end of the text line and seen me through the fearful events, and the painful tests, and the desperate fight for breath, and the complete exhaustion. And I know that they are worried and scared too, but they stay there with me all the same. They are amazing. They give me strength and fight, and they let me know that I'm not alone.
Eventually I made it through the relapse and I slept for another 36 hours with my head full of violent dreams about death, attack, beatings, fear. Little of it was truly restful and I kept waking for brief times full of fear, but too exhausted to stay awake, so I fell back into another, different violent dream. I'm still finding my dreams are violent and vicious and frightening - this phase persisting longer than usual - but perhaps that's because there was such a bad set-back that my body and mind weren't prepared for another assault so quickly on the heels of the first.
At last I am eventually feeling more human - human enough to have the computer out this evening and be updating you on recent times. I am still tired. I'm still on the oxygen and the aminophylline infusion, but the dose has been reduced again this afternoon back to 20ml/hr (it had been put back up to 50ml/hr when I relapsed) ... so now I'm back to where I was the night before I had the set-back. I've no reason to believe that the same thing will happen again, and I actually feel a little more stable this time round than I did last time, but it's always a little anxiety provoking and I won't be counting any chickens of any kind until the drip is down successfully.
A little over a week later and I was at the GP surgery because I've been getting neuropathy in my hands. The doc examined me and has decided that I most likely have carpal tunnel syndrome :o( and she's referring me to plastics, which seems a bit odd as you'd expect neurology to deal with nerves etc, but apparently it's plastics who 'do' carpal tunnel syndrome. I'm told they'll do a nerve conduction test (whatever that might be), and if it tests positive then the likely outcome is a small operation to reduce the pressure on the offending nerve - the medial nerve, I think. So yes, that's why I went to the GP, but after we'd covered that she asked, 'So, can I ask? How's you're breathing?' Seeing as I couldn't speak in full sentences it would've been foolish to try to persuade her that I was okay, so I came clean and said that it wasn't great, and that yes, I was had deteriorated a little since I saw one of the other GPs two weeks previously. She had a listen to my lungs. She wasn't very impressed. Actually she looked a little scared, but she was an F2 trainee GP so perhaps hasn't come across an awful lot of awful asthmatics. She left the room and got her supervising GP - Dr Cn - who knows me very well. Now he's seen me a lot worse, but he wasn't happy with me either and both 'strongly recommended' that I go to hospital. I conceded. To be honest I was tired of the struggle that had been getting worse over recent times, and while I was at the surgery they got through to the ward and arranged a bed for me. Now, as is my wont, I almost always have something much more pressing to do than immediately go to hospital, and this time it was that I needed to get home to let the man from the council come in to check the electrics of the new ventilation system. It was supposed to have been done the previous week, but I'd had to cancel it as the appointment clashed with my portacath operation, and suddenly it seemed the worst thing in the world to let him down and not be in at the re-arranged time. The docs were a little confused as to my insistence that this was more important than getting to hospital, but Dr Cn does at least know my strange ways when I'm ill, and decided that I was safe enough to do this. As it turned out, the ward didn't have a bed until 1pm anyway (and it was currently around 10.50am) so I'd have been hanging around the surgery for ages. I was better off at home where I could gather my hospital bag, my meds, sort out the cat, and, of course, let the man from the council do the checking he needed to do.
I went home. I was okay. Well, I was sort of okay, in a kind of Becky-ish way. I texted W to let her know what was happening, and she wasn't surprised to hear that I was being admitted as she'd seen me just 36 hours previously and was concerned. She came right over and waited with me until it was time to come up to the hospital ... although actually we had to wait a little while as W's lungs were naff too and she needed to nebulise before she could drive me up to the hospital.
When I got to the ward I was still in that 'not too bad for Becky' kind of state, but as seems to happen sometimes when I've been deteriorating over a while and then get to somewhere 'safe' to splat, I did then splat and ended up quite poorly :o( We'd been hoping not to have to use my new plumbing quite so soon, but it wasn't long before it became evident that it was going to be put to use. But oh my word, how amazing! It's fantastic! No pain. No farting around with endless cannulae. No panic while trying to get a needle into a vein that doesn't want to be stabbed or have a needle put into it. No hassle. Just get the technique right, plug me in and set me going! Amazing! Wonderful! Awesome! And no hassle since, either. No problems with the lines stopping working, or leaking, or giving up, or getting caught and being pulled out. Nothing. Just straightforward, continual clear running. Huge relief. It's the best thing ever! Can you tell that I quite like it? ;oP So yes, while it was unfortunate that it was needed so soon after being implanted it has made that little bit of hospital life so much easier. However, the night wasn't easy and I was really quite ill. My blood gases were a bit of a mixed bag, with my pO2 being okay, but my pCO2 being a little too high for comfort, and that's a concern. That's the one that indicates how tired you're getting, and rather than coming down it was getting higher. Thankfully I managed to avoid ITU, although the outreach team did come to see me several times over the next several days to keep an eye on me and to keep reassessing whether or not I needed to be transferred to ITU. I don't like it there though and will do all I can to stay up on the ward. Anyway, I avoided it :o)
The night was a long night; a breathless and scary night. The registrar who was on call was worried, and although she'd gone home at about 1am she kept phoning the ward to see how I was, and at about 5am she said she was too worried, was giving up on sleep and coming in to be with me. Bless her. I was utterly exhausted, but still just about holding my own, and then things gradually started to ease, and eventually I fell asleep for a short time, although breathing remained hard work for the rest of the day, the following night and into the next morning. And then I slept. And I slept. And I slept. And then I slept some more. And then I started to feel a little bit more human although still very tired.
We started to tentatively reduce the aminophylline infusion from 50ml/hr to 40ml/hr, and that seemed to go okay, so 24 hours later we reduced it again to 20ml/hr. That started off okay, but then I woke up in the middle of the night unable to breathe and back at square one, with rising pCO2 again, ineffective nebulisers, ITU back up here for 3 hours and outreach keeping returning to check on me. I felt awful. I was scared. I was exhausted. I would've cried if I'd had the energy or the breath, but I had neither. I prayed and I prayed, and I texted my friends asking them for prayer too, and my friends texted back with both prayer and other support, keeping me sane in the scariness of it all. I think the medical staff probably find it odd that I often text when I'm really ill, but it's such a lonely, isolated time, and there's so much going round in my head that I'm not able to speak as I don't have the breath, but which I can say in text with ease. And wherever they are in the country, my friends have been there for me and sat with me in the dark at the end of the text line and seen me through the fearful events, and the painful tests, and the desperate fight for breath, and the complete exhaustion. And I know that they are worried and scared too, but they stay there with me all the same. They are amazing. They give me strength and fight, and they let me know that I'm not alone.
Eventually I made it through the relapse and I slept for another 36 hours with my head full of violent dreams about death, attack, beatings, fear. Little of it was truly restful and I kept waking for brief times full of fear, but too exhausted to stay awake, so I fell back into another, different violent dream. I'm still finding my dreams are violent and vicious and frightening - this phase persisting longer than usual - but perhaps that's because there was such a bad set-back that my body and mind weren't prepared for another assault so quickly on the heels of the first.
At last I am eventually feeling more human - human enough to have the computer out this evening and be updating you on recent times. I am still tired. I'm still on the oxygen and the aminophylline infusion, but the dose has been reduced again this afternoon back to 20ml/hr (it had been put back up to 50ml/hr when I relapsed) ... so now I'm back to where I was the night before I had the set-back. I've no reason to believe that the same thing will happen again, and I actually feel a little more stable this time round than I did last time, but it's always a little anxiety provoking and I won't be counting any chickens of any kind until the drip is down successfully.
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