Friday, 12 December 2008


Well as you have probably worked out from the gap, I did go into hospital for IVs. Things got a little complicated with to begin with... I have not made my wishes on end of life decisions clear. It’s something I've discussed verbally with the hospice staff but nothing official. The night before I was admitted I scribbled some basic info about me on note paper and decided I'd make my wishes clear. I didn't find a time to talk to my parents about what I'd written and it all came as a bit of a shock I think. I got told I needed a change of attitude and I shouldn't be so selfish. Selfish or not those were my wishes and the medical team stuck by them. It made things easier for me in some ways. I knew what was and more importantly what wasn't going to happen... Anyway I got my IVs, it took 3 five day courses of 2 strong IVs to control things a little, MRSA was isolated in my sputum. But I am still not infection free I don't think. Since my allergy (if you can call it that) was 'discovered' to Vancomycin last year that drug has now obviously become unusable. Instead I was tried with a different drug called Tigecycline, it is a good drug for MRSA and other bacteria but the side affects aren't pleasant and due to vomiting I've lost another stone in weight.
Due to infection Jamie hasn't been able to come near and I'm sorry to say it has lead to us having to end our relationship. The strain for me was too much. I wanted him there when I needed him most and he couldn't be, I know for 1 second thats not his fault its just the way things are and the more I thought about it the way things always will be. We agreed to still talk/text and I hope he will continue this blog with me. I'm looking forward to hearing how his training for Australia transplant games 09 has been going...
Jamie made transplant look easy, his is one of the success stories that I'm glad to have been apart of but recently the issue of transplant for me seems to have got more complicated (if that’s possible). Duke is still waiting on scans and x-rays that have been posted to them. The teams have now shown alot more interest and both London and my local transplant centre appear to want to be in the picture. I don't have a problem with them taking interest, I need to keep my options open and things would be so much easier if I could get on the list in the UK but they are proposing dangerous and invasive tests which I'm not sure I want to be part of. To cut along story short things with the UK teams have got very 'messy' and its been left to my local consultant to untangle this web of mess and see who is really in it to help me get on a transplant list and who is out to make life harder. I wouldn't want to be in his position right now.
If there's one thing I've learnt recently from various conversations and recent happenings its that transplant is no cure, it is no fix and it is certainly not the answer to everyone's problems. It is a gamble and a big one at that. A swap of one set of problems for another and what I and the teams have to work out is are my problems worth swapping? Sure the reward of things working out is the dream but what if I were one of the unlucky one's it just didn't work out for? I'll leave you with some transplant wisdom anyway...

1 comment:

sunshine rose said...

i just started blogging here a couple of weeks ago and came across your blog. i'm sorry about the breakup. i just had one recently as well. i hope you start feeling better soon and that you get your new lungs as well!!

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