First off I'd like to thank everyone for their comments and support yesterday. I'm sorry I wasn't able to reply to each of you individually but as you can probably guess I had other things on my mind. I don't suppose any of you will be surprised when I say I had a very restless night.
I've spoken to most of my family now, except Laurence, he's working this weekend and I don't really want to land anything on him after a grueling twelve hour shift. My mum was very supportive and she wasn't surprised as she had thought I'd been waiting far too long now. Andrew was very pleased and being the only person in the house with medical training was able to put some of my concerns to rest. The antibody thing is not really that big a deal. We all have them, mostly all low level and we pick them up through things like vaccines for childhood diseases, pregnancy and illness. Every time you catch a cold/flu or stomach bug you collect antibodies. If you've been abroad and picked up something nasty or had to have a blood transfusion at any point then you'll have higher levels.
Matching antibodies is never an exact science. If they held out to perfectly match every single person far fewer transplants would be done than are now. It is all a bit of a compromise and the reason transplant patients have to take immune suppressants. These drugs stop your antibodies attacking the new organs which they will see are an invader and something that needs getting rid of. By deciding to abandon finding a perfect match for me all Papworth are doing is risking provoking a stronger defence response. And all that means is I'll have to have stronger immune suppressants and be on a higher dosage for a longer period of time. Now although Andrew isn't an expert his explanation makes sense to me, especially in light of Dr Parmar's comments about more careful management post op. If all it means is popping a few more pills, well that I can handle.
Last night I sat at the table preparing my meds knowing that one way or another I will not be doing that much longer. I will either get my new meds or my transplant and probably very, very soon. Of course the meds are the more certain of the two but anything, I now feel, is possible.
It is really hard to describe the emotions and thoughts that whirled around in my head last night and are still churning away. I'd more or less lost hope of ever getting that transplant. I knew things were becoming worse for me and time was short. Now I feel full of hope and excitement. Yes, it could still be a long wait but my chances have improved. Of course I also feel scared about the increased risk factor, especially going for just the lungs but sometimes the ends justify the means. So I'm all of a quiver at the moment. It's like being caught in a whirlwind but that is the nature of transplant. Nothing happens for a very long time and then suddenly it's all action stations. However having calmed down a little I have to say my friend Stacie put a comment that has only just hit home. She said it was good that they had decided to move me along but bad that they felt the need too. Yesterday I hadn't thought of it that way. Today I can see her point, though they could just be fed up with me telling them how fed up of waiting I am. On a serious note I do need to keep my feet on the ground and take in all the implications. Clearly something has changed that has spurred them into action. However I am determined to only look on the positive side of this development, change can be good.
So last night I lay in bed and funnily enough I didn't really spend that much time thinking about what had been said. Most of the time was spent thinking about what I could do afterwards. I was counting things off my fingers, climbing stairs, walking around the village, jumping into a pool. I wrote a blog a little while ago call 'The Destructive Power of Fear', well let me tell you there is nothing more powerful in this world than hope. It overrides everything so maybe fear isn't that destructive after all.
So what am I getting up to this weekend? Well I'm planning my menu for our Easter get together and preparing for my return to work. With no appointment from the Brompton and, with Easter just around the corner, unlikely to be one until at least May I figured I'd rather go back and test the waters. I will probably need a bit more help and I'm probably going to need my oxygen more but I think getting back to some normality will do me the world of good. Apart from that I'm just going to relax in front of the TV and do absolutely nothing. I've had a really hectic twenty four hours I think I need some down time.
Matching antibodies is never an exact science. If they held out to perfectly match every single person far fewer transplants would be done than are now. It is all a bit of a compromise and the reason transplant patients have to take immune suppressants. These drugs stop your antibodies attacking the new organs which they will see are an invader and something that needs getting rid of. By deciding to abandon finding a perfect match for me all Papworth are doing is risking provoking a stronger defence response. And all that means is I'll have to have stronger immune suppressants and be on a higher dosage for a longer period of time. Now although Andrew isn't an expert his explanation makes sense to me, especially in light of Dr Parmar's comments about more careful management post op. If all it means is popping a few more pills, well that I can handle.
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| I'm all packed and ready |
It is really hard to describe the emotions and thoughts that whirled around in my head last night and are still churning away. I'd more or less lost hope of ever getting that transplant. I knew things were becoming worse for me and time was short. Now I feel full of hope and excitement. Yes, it could still be a long wait but my chances have improved. Of course I also feel scared about the increased risk factor, especially going for just the lungs but sometimes the ends justify the means. So I'm all of a quiver at the moment. It's like being caught in a whirlwind but that is the nature of transplant. Nothing happens for a very long time and then suddenly it's all action stations. However having calmed down a little I have to say my friend Stacie put a comment that has only just hit home. She said it was good that they had decided to move me along but bad that they felt the need too. Yesterday I hadn't thought of it that way. Today I can see her point, though they could just be fed up with me telling them how fed up of waiting I am. On a serious note I do need to keep my feet on the ground and take in all the implications. Clearly something has changed that has spurred them into action. However I am determined to only look on the positive side of this development, change can be good.
So last night I lay in bed and funnily enough I didn't really spend that much time thinking about what had been said. Most of the time was spent thinking about what I could do afterwards. I was counting things off my fingers, climbing stairs, walking around the village, jumping into a pool. I wrote a blog a little while ago call 'The Destructive Power of Fear', well let me tell you there is nothing more powerful in this world than hope. It overrides everything so maybe fear isn't that destructive after all.
So what am I getting up to this weekend? Well I'm planning my menu for our Easter get together and preparing for my return to work. With no appointment from the Brompton and, with Easter just around the corner, unlikely to be one until at least May I figured I'd rather go back and test the waters. I will probably need a bit more help and I'm probably going to need my oxygen more but I think getting back to some normality will do me the world of good. Apart from that I'm just going to relax in front of the TV and do absolutely nothing. I've had a really hectic twenty four hours I think I need some down time.
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