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I am now in my 7th month post rabbit ATg and immediate cyclo - docs were recently discussing looking at possible bmt because they reckon it hasn't worked, I said whoa there big fella's! and here is why.
I have felt really really well since the ATG, I have returned to work as an occupational therapist, do not get tired, have not had an illness since about 5 years ago when i got the flu. My whites and neuts have climbed to above critical level but nowhere near full counts. hb and plates have also stayed low and i have had to have plates every 10 days and red every 3rd week. (now on exjade) I have been adamant for some time now that they are pushing too hard saying it hasn't worked......recent bmb may show which i get the results for next tuesday....but heres the thing.
Like a previous poster said...i see that there has been a war of terror on my poor little bone marrow, for probably nay on 5 years if it was that virus that caused it. No way is my marrow going to all of a sudden spring into life just because those rogue T cells have been diminished. I feel (and i will hold my hands up if i am wrong) that my body knows what it is doing, I have now completed week 3 without a transfusion, yes if I climb my stairs the old heart beats quite quickly but with a few deep breaths it soon calms down and a normal beat ensues. I do not get tired, and I do not get sick.....something tells me something is working. The only side effects I have are from northesterone (to stop monthly bleeds) and the itching is stopped by a piriton tablet! I get mild cramps in my legs and feet but manage to keep them under control. My gums are sore from the cyclo, but i mouth wash frequently and once my counts have increased i will get them sorted. I have refused to get hung up on those numbers any longer and have asked the chemo nurses to only phone me if I need a transfusion, with the belief that no news is good news, and I know when there is something wrong.....I did when I was diagnosed...52 years on this planet gives you that knowledge really. I do find that trawling the internet can be an incredibly scary thing to do. So my advice to anyone would be...look at your quality of life now. If my counts climb a little and I continue to be able to function without transfusions then i dont care what the total counts are. I can eat in restaurants, I can go shopping in busy supermarkets at their busiest times, I can work, I can handle animals in fact there is nothing I cant do except of course extreme sports or juggle with pen knives. So, for me, BMT will be that absolutely the last resort, it will be when all other options have gone and my life is on the line...but somehow...I reckon that little guardian angle who has looked after me all my life will make sure I beat this disease and it has been a temporary but necessary blip in my journey through life. I do appreciate that not everyone lives in my little pollyanna world, but i am incredibly happy in it, and this disease does not intimidate me one bit - its picked on the wrong cookie here! (grin) xx
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