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.

Check up

Let me start with another apology for again neglecting my blog. For the most part I've been enjoying having a break from studies so busy doing fun stuff :o) I've also been getting the paperwork sorted for my holiday to France in 10 days time :oD I'm very excited and have all my medical stuff translated into French now, thanks to a rather wonderful OU peer who read my blog, lives in France and offered her services of translation for my paperwork and if I have any medical problems while I'm out there. She's a marvel.

So now for today's post.

A couple of weeks ago I was getting twinges of toothache so I made an appointment with the dentist, but the earliest I could get was yesterday and of course, as is the way with these things, almost as soon as I made the appointment the toothache disappeared. As it had been some time since I'd seen the dentist (about a year, because as it turned out there was something wrong with their appointment recall system and I hadn't received the last appointment they'd sent out) I kept yesterday's appointment for a check up. I explained to Mr V (the dentist) that I'd had toothache when I'd made the appointment and when he checked my teeth he said there were no cavities, but my teeth were very sensitive and there was some gum recession. He said I should use a sensodyne mouthwash, but I pointed out to him that I'm allergic to mint/menthol so can't use it and haven't found a mouthwash I can use, and also that I'm allergic to colourings and all the mouthwashes I've seen are not only minty, but are always a lurid pink, blue or green. Mr V seemed to find it difficult to get his head around this for a while, but eventually did and said to use warm, salty water instead of a mouthwash. Anyway, he said that all he needed to do was a scale and polish, but as my teeth are so sensitive I'd be writhing around in the chair with pain if he did them there and then, so advised me to use the salt water mouthwash this week and he'd put some fluoride varnish on my teeth that should help and mean that when he does the scale and polish next week the pain shouldn't be too bad. He smeared the pastey varnish on my teeth and sent me on my way. The pastey varnish, though, had a taste that I vaguely recognised but couldn't identify ... until I was going down the dental surgery stairs and my lips started to swell. It was banana. I didn't go back up to the surgery, instead opting to go back to the car and get home as soon as I could, but by the time I got back to the car my lips were really quite swollen, my tongue was fizzy and swelling, my throat was itchy, my eyes were itchy and, I was feeling a bit nauseous and my lungs were tightening. I took a double dose (as prescribed by the immunologist) of each of the antihistamines I'm prescribed for severe allergic reaction and used my nebuliser. I probably shouldn't have driven, but all I could think was that I needed to get home, so that's what I did, whereupon I continued on with the meds, sat with my Epi-Pens, phone, mobile and care alarm next to me and hoped that the antihistamines would kick in. I probably ought to have sought medical help, and I certainly don't advise taking the risk that I did, but I got lucky and things did begin to settle. Once I was well enough I thought I should probably call the dental surgery, tell them what had happened and find out the name and ingredients of the thing the dentist had smeared on my teeth. I spoke to the receptionist rather than Mr V, and she was very concerned, but also very helpful. It turned out the stuff was called Duraphat, and she asked me if I wanted to speak to Mr V. I didn't think there was an awful lot of point in talking to him as there was now little he could do, but a couple of minutes after I put the phone down Mr V rang me, sounding very worried and said that he wanted to see me straight away. The dental practice has two surgeries and he was doing his afternoon surgery at the practice so that's where I was to go, but seeing as I thought I probably shouldn't drive I wasn't sure how I was going to get there so Mr V offered to pay for a taxi. That's what I did. Between ending the call and arriving at the surgery Mr V had spoken to them at the dental hospital and they advised that I either see my GP or go to A & E. Personally I didn't think there was an awful lot of point in doing either of these things now as I was better than I had been, even though I still didn't feel 100%, but Mr V wasn't happy so I opted for phoning my GP to ask them for advice. Mr V gave me their phone and waited while I called. I spoke to Michelle - one of the GP receptionists I know well - and explained the situation. She said I'd need to speak to the on-call doctor, that they'd call me back, but she couldn't say when that would be, so I prepared myself for a long wait at the dental surgery. Mr V was going to have to go somewhere before too long, but wanted me to stay at the surgery so the other dentists there could keep an eye on me while we waited for the GP to call back. He spoke to the first of the other dentists, explaining what had happened, who was as surprised as Mr V at the reaction I'd had (Mr V said he'd never heard of an allergic reaction to Duraphat, and hadn't known about bananas containing benzoates, but that that explained my reaction) and asked him to keep a close eye on me. He then went into the second of the other dentists and did the explanation thing, but came out saying that this other dentist's patient was a nurse and she'd said that I should go to A & E, and that I should go soon because otherwise the queues would start to build up. Mr V seemed very relieved to have this second opinion that I ought to be seen by a doctor and it was decided that that's what would happen. Again he offered to pay for a taxi for me to get to A&E, but first I had to call my GP surgery to tell them what was happening and that I now wouldn't need them to call me back. Michelle asked if the dentist was getting me an ambulance and when I told her that no, I was getting a taxi she said, 'A taxi. That's an interesting approach ... well, you know where we are if need us.'

I have to say that I felt like a bit of a twit arriving at A&E displaying few symptoms of severe allergic reaction by now, but saying how things had been earlier, but they were okay (although saying that I probably should have gone earlier) and I was seen fairly quickly. The doctor was rather patronising and obviously hadn't read the copious notes they have on me from my multiple admissions for my asthma. He questioned my 'possession' of so many different antihistamines, until I explained that they were prescribed by the immunologist; he questioned how I had access to a nebuliser (!) so I then had to explain about my asthma; he questioned my allergy to mint (I keep a list of all my meds and allergies and I'd given him this list) simply because he hadn't heard of it before. Anyway, after examining me he said that mostly I was okay, but I was tachycardic, breathing a little quickly and my peak flow was a bit low at 165, so he prescribed more nebulisers and said they'd keep me there for a while to make sure that I didn't have a second wave (biphasic reaction). After a couple of hours or so a different, much less patronising doctor came to see me, saying that the first one had now gone off shift but had handed me over. He redid my peak flow, which had picked up to 250 and he felt I was probably okay to go home, but because of my history (he'd looked at my notes) he didn't want me to feel like I was being pushed out before I was ready and he'd be happy to keep me in overnight if I felt like I needed to be. I didn't think I needed that and I felt lots better, though very tired by now. The doc checked that I had an Epi-Pen, was a little worried that I live alone, but reassured that I have the community care alarm. He gave me strict instructions to keep that beside me, the Epi-Pen beside me, all my other meds beside me and the phone beside me all evening/night, and if there was any deterioration at all then I was to 'dial the 9s' immediately.

I have now had the very weird, but very good experience of walking out of A&E! I don't know when the last time that happened was. In fact it was such an exciting experience for me that I had to take a photo of the exit/entrance as proof of it. Here's the photo:

Today I'm okay, but still very tired and still have that post-poisoned feeling so I've done very, very little, which is rather boring and very frustrating.

Even though things turned out okay in the end, yesterday really wasn't the day I'd had planned.