Today has been a pretty impressively brilliant day.
It was another Harefield appointment, my first in six weeks after MC told me that it was a bit pointless coming back until they had clear data on whether my CMV had retreated for good or not. So he had sent me away with instructions to send in bloods every 2 weeks to keep a check on things and that if I hit the 3 month mark with no adverse effects or without showing anything above a zero on my CMV then he’d take me off the Valganciclovir I’ve been on since May and see if my body will cope without it without submitting to CMV again.
Seeing him today with a month-and-a-half of clear results, he was suitable pleased and happy for me to drop my Valgan and continue with everything else, albeit being very much more aware and careful about the first signs of CMV infection, necessitated by the fact that CMV can very rapidly kick-start rejection of the not-very-good kind, which could do my serious damage.
That said, though, he came out with something I wasn’t expecting to hear at all. Although I may feel like I’ve had a fair number of blips, he thinks I’m doing incredibly well and – going by his experience of CF patients post-transplant – thinks I now stand a better-than-average chance of 5-year survival.
At the time of my transplant, I was quoted statistics saying that 73% of people make it through the first year, and within that 27% that don’t are included people who may die on the table or suffer serious post-operative complications. Once you stretch the survival period to 5-years, the odds stand at 50/50, but MC now believes that for me the benchmark can be shifted from 50/50 at 5 years to 50/50 to make 10 years.
Another decade of life is better than I think many of us dared to hope. I said before my transplant if I’m given just six months of a new life I’d be happy. Time enough to play with my Godsons, experience the things I’d not been able to do for breathlessness and lack of energy, learn to do things on a whim again. Having slipped past that stage back in May, albeit in the middle of a CMV/EBV attack, I’ve felt contented with my lot, whatever is thrown at me next. To know now that there’s a very real possibility of a future worth planning for is too incomparable for words.
I’m aware every day that someone, somewhere has lost someone they loved very dearly. I just hope I can make enough use of the extra time I’ve been given to show them what a truly wonderful gift they have given not just me, but my family, too.
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