It's been some time since I posted but I keep in touch with the posts. It's part of me moving on in my lengthy recovery. I know from what I see that there are many new Forum members since I was active and that's great because we know it's one of the best sources of information , support and help for the MPN community. It's helped me greatly.
I wanted to give those of you who 'know' me an update of where I'm at but for those who don't know of my MPN story I was diagnosed PMF 2006, had a Stem Cell Transplant in 2015 and am still feeling the effects of severe Graft Versus Host Disease (a reaction to the new cells) . But importantly I'm here to tell my tale.
I'm doing ok as things go. Bloods are picking up as my immuno-suppressant is down to a very low dose. I'm still quite weak in terms of how fit I used to be pre MF but I can live with that and I'm trying hard to regain an acceptable level of fitness. My eyes are extremely dry and a source of much discomfort so I need drops day and night. But this is a small price to pay.
The cataracts caused by high dose steroids have been lasered away but unfortunately the Osteoporosis can't be fixed as easily. But I'm coping fine for now and taking my calcium.
So that's me, things aren't perfect but the MF is gone and I've got a reasonable quality of life which allows me to get out and about most days and be a hands on Grandad.
What I wanted to say to all new members, recently diagnosed and those who are worried about the future in terms of possible Transplant is not to give up hope because treatment and survival rates are improving and my case is extreme in terms of my GVHD but I'm finally getting my life back on track. Happy Days. 😃
Hope you all had a good Valentines Day xx
Regards - Chris