Well hasn't it been a while? I have genuinely not had much to say except for wee updates so I decided to keep them and lay them all out in one post.
Firstly I had to keep up with my profile for the transplant team in Newcastle by having blood and sputum samples done and a bone density scan taken too, as you need one done within the last two years to fit their criteria for fitness for the operation. I don't hear back about the samples unless something is wrong and I'm glad to say I haven't heard a peep so that's obviously all fine. I did hear back from the scan though and I've to stop taking the medication designed to boost bone density as apparently I now fall into normal parameters again. This is very good news as my period on steroids 10 years ago had left me with a mild case of osteoporosis. They measure the bone density of your spine and hip bones and compare them with the norm for someone of your age and sex and I was something in the region of 75% to 85% for them. I must be much higher now for them to remove the drug from my normal regimen. I've still to take the calcichews because, even though I don't need the boost of the calcium for my bones, they come packaged with vitamin D, which I need because I don't get enough natural sunlight.
At my last trip out to get Immunoglobulins I got a bit of a scare. My oxygen saturation levels were ad low as 82%. On a normal person you'll get somewhere between 97-99% and I'll (on 1 litre of O2) routinely achieve 91%. A normal person would be floored by that but my body has grown accustomed to it over time. When I lived in Belfast and had my care transferred to the respiratory team over there they didn't believe that I should be functioning with sats so low that they actually kept me in overnight, refusing to believe that I could function like that. They finally let me go when it was clear I was perfectly fine. Now back to the immunoglobulins. We decided to let me relax a bit and see if the sats would climb, which they did to 86%. Now all this time I was chatting away to the other day patients in the room and talking perfectly lucidly with the nursing staff too but when my treatment was over and my sats hadn't increased any further I asked them if a doc could check me over. No sooner had he done so and found nothing overtly wrong I noticed that my oxygen cannister was actually set at zero. I must have knocked it getting out of the car or maybe even went the whole morning without oxygen. Now it was a mighty relief to turn it on again and my sats shot up to 92% and so they let me go home but it reassures me that, if ever I do go out and something happens with the liquid O2, that it's not as scary a proposition as I may have previously thought.
This coming bank holiday weekend I'm getting visitors. On Sunday I'm getting my most regular visitor Claire coming over and on Monday I'm getting two old friends from my time at Glasgow Uni coming through and we'll maybe go out for some pizza. They both know a fellow that I seem to be linked with, albeit one step removed, through many of my friends who had a transplant earlier in the year. I don't want to talk about the details as they change so very quickly that you can never be too sure what is actually going on but he isn't having the best of times post transplant. I can only hope he recovers as, from the many people I know who know him, he is a widely adored guy in Glaswegian circles.
Monday also brings about the fifth anniversary of the day I walked into Liverpool Royal Hospital and this whole sorry mess started. From then it took two months of treatment for the original fungal pneumonia till I got swine flu and then my immune system went mental and started shredding my lungs with it's over-enthusiastic attempts to fight the infection.Another few months and another chest infection and I wasn't allowed out the hospital without 24 hour oxygen. I had lost a power of weight. I was 41kg so I had the feeding tube put in my stomach so I could gain the weight required before I could even meet the transplant team.By this time 6 months had passed already - time flies when you're having fun - and my respiratory team and I set about meeting all the criteria needed before you could even get on to the consultation list with the transplant team.It would be another year and a half before I got to see them at the satellite clinic after I had met all their targets (I was well over the Body Mass Index required by this point) and they asked me if I wanted to be put forward for transplant. After a fairly firm yes they agreed I was suitable enough to go through their boot camp of tests in a four day stay down in Newcastle. It took three of these stays before they agreed to put me on the active list, by which point I was just past the 3 year point of the first infection. I had fought long and hard to get there. Now 20 months have passed since I've been on the active list and I'm not ashamed to admit I'm worried.
You see, I am blood type O negative which means I can donate to anybody but they have to be type specific when donating to me or matching me for such things as a transplant. We O- types make up only 7% of the population so my chances of a match aren't great so it's really all down to blind luck if I get one. In the meantime I am slowly (very slowly, don't get alarmed) declining but I'm doing my best to keep that at bay as long as I can. I have my nebuliser to help me breathe a bit better and my muscle toning pads to try and keep some muscle in my legs at least, although I would be the first to admit I don't use it as often as I perhaps should. I'm noticing that I need to sleep a lot more and there's no point fighting it. This is frustrating. What is also frustrating is the time that I am awake my concentration span is pathetic. I've got piles of books to read and no ability to get through them. Same goes for films and tv series - I don't have the attention span needed for some of them and find myself lost in the more intricate plot details. I've talked before about how I lose my train of thought often and can even be mid sentence when it goes but the real kicker is when I can't remember something. The comedian Frank Skinner maintains that if you can't remember something you should never look it up as it allows the brain to be lazy. If you genuinely don't know something then look it up by all means but if you've simply forgotten it then you must force your brain into remembering. I have adopted this and so wasted four hours the other day trying to remember the word hyphen. When you value your mind as much as I do mine then it's a right kick in the stones when it malfunctions.
In other news I have a new, hospital style, reclining bed. I got it through the generosity of my sister's in laws when a member of their family passed away and I have to say it's been a revelation. A big double bed that I can tilt the back up so I can sleep in a more upright position is quite simply brilliant for someone like me. It aids my breathing no end. Right that should keep you lot going for a while. I'm away to sleep in some comfort.
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