8.1.16

New Year... New infection....


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After you have a transplant the general consensus with everyone around you is that your life had miraculously changed. It did. However not in all the ways that people think. People seem to be under the impression that you don't go to the hospital or the GP as much or you see less doctors and less specialists than you used to. They think that your medication becomes less and that you are just miraculously like a normal person again. 

Transplant was a swap. Transplant gives those of us who do it a much better quality of life 'hopefully.' It certainly has with me, I can walk more than I've ever walked and I'm not asleep all the time and I focus again and I've been able to do things that I certainly wouldn't have been able to pre-transplant.  The medication is still there though, admittedly it got rid of the one medication I wanted gone more than anything else in this world and that alone was worth the whole transplant thing; the wait, the operation, the recovery, all of it. Getting rid of that one medication was worth the entire thing! I do still have lots of medications though that changes all the time and does also have it's side affects but as long as you don't mind popping a few pills through the day they really don't have that much impact on your life and I've been popping pills through the day since I was eleven years old so really that was something that I could handle but my life isn't different in that aspect I still take medications I'm just very fortunate that I don't have to be on a IV infusion 24/7 anymore and that's the difference! 

The thing is it doesn't get rid of the doctors, I probably have the same if not more doctors as I did pre transplant and because of complications to do with transplant I will be seeing more of them. I've probably been to my GP more since my transplant than I have ever been to my GP before and that's because we have to be so, so careful and we're having to get used to a whole new condition essentially. So for instance, right now I have this lung infection and I've had it for a few weeks now and I've been on antibiotics for a few weeks for it but it's just not shifting it, now I ring Papworth to keep them up to date and we liaise with my GP also but it's hard for me to know if it's a bad infection or if it's nothing for me to worry about because it's not affecting my temperature or heart rate (Lung function to be determined as I've lost my lung function machine, whoops!) but before transplant I would have known if something was bad, I would have known what to do for it. Now though I don't have a clue so I'm having to go with my doctors and do as they say which I find very hard because I've always been very much in control of me and my condition and it worries me when I'm having to rely on people that don't necessarily have the experience to deal with some-one in my situation. I guess it's something that will take time and the longer I am post transplant the more confident I'll become in being able to tell if something is "normal" for me. 

The good thing however is that my body seems to be able to deal with infections better and I'm not completely bedridden like I once would have been and I'm still managing to get out and walk (although not today it would seem as I am feeling rougher than usual.) It's nice though that I can still do that although whether that's good for me and I should just be resting is yet to be decided as I haven't really got a clue anymore lol. 

Papworth have said if the antibiotics don't start doing something by Tuesday then they'll want to bring me in sooner than my clinic date which is the 21st, just so they can give me a looking over and check out my bloods and x-ray and stuff rather than me going to a&e which I'm more than happy to do because to be fairly honest I wouldn't want to go to a&e again not after the palaver in October LOL.

It's nice though that a lung infection is my biggest worry at the moment, I have others that will pop along soon enough but for now I'm happy that the only thing I'm worried about is my lung infection and that I possibly may not get my 10,000 steps in today lol. 

As always, thank-you for reading and chat soon. 
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1 comment:

  1. Hope your lung infection isn't much and you can recover quickly x This post was really interesting to me because as a "common" person you never really know much about the transplants and you assume it makes everything better and all the bad things go away but it just gives you some different problems to deal with in hopefully a good way xxx

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