Are there any fellow SCT/BMT ers out there with an opinion/first hand experience?Firstly the good news, I had an SCT almost 2yrs ago and the worst of my GvHD appears to over with, my medication level is low (Jakavi 5mg bid) and my blood counts are normal😉
However, I still feel tired, and am trying to shake off the 'achy effects' of long periods of corticoids.
Should I accept that this is as good as it can get - and let's be honest I came back from Dire straights and aren't doing too badly - or with time can I hope to find my old energy levels.
It may just be that I'm getting older !!
Any thoughts?
Have a good day
Crapaud
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crapaud
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Hi Gary, , I ask myself the very same question. And as time passes I begin to accept that my life as I knew it has gone and what I'm left with is a new life style which is going to be much more restrictive in terms of energy levels, back / bone issues, mobility,, possible long term eye problems, and my general well being. I'm not being defeatist here just realistic in my expectations. Anything better will be a bonus as I count myself lucky to be alive.
I do know at least three folk who are living perfectly normal lives but they had mild to moderate GVHD. I don't know what stage yours is or was Gary but mine is stage 4 of 4 and Consultant reminded me today that only 1 in 3 survive it. So it kind of puts things into perspective in terms of how severe it is. And like you I have lasting effects from steroids.
What I find is that some of the post SCT follow up could be better. I think I might benefit from physiotherapy for instance or very gentle muscle building exercise which I can manage and need expert help with. I have asked but no joy. To me it's part of rehabilitation after dropping below 6 stone last year.
I know I haven't really helped you but don't give up as we are all different in how we are affected and recover. I'm not giving in to it but I'm not raising my expectations either. I find that my gains are incremental and my setbacks are monumental. It's a fact that Serious GVHD recovery is a very long road to tread and we will wear out several pairs of tries along the way.
I took a look at GvHD 'levels' in order to reply to you.
I was probably around 3 last year at this period and now am at 1 or 2, so don't really have a lot to complain about.
I am fortunate in that my GP didn't hesitate to prescribe me sessions with physios for both light muscle building and treatment of my fascia issues.
Although the exercises aren't rocket science the physio helps in knowing when it's right to push a little harder and when it's better to give things a break.
I am now in the quandary of deciding should I push for medication to help clear up painful joints and tendons - having spent a while on high medication levels I'm not too enthusiastic about ramping up all over again though -or bear with things and hope they improve on their own (or perhaps accept that all in all I've come out of this not too badly and be satisfied).
I almost feel ashamed conferring these things to you in view of the difficulties your going through, but in a way feel almost like I'm talking to a 'twin brother' having a very close SCT anniversary to yours.
Hey 'Brother' Gary please take it from me there is no shame in wanting your old self back, it's something I dream of and wish for almost daily. But then like you I feel a tad guilty or selfish as there are many worse off than me.
I guess I'm now at stage 3 GVHD but Consultant hopeful that in time it will ebb away. Like you I have painful joints and bones mainly in legs, feet and back. Whether more drugs will help you or I to shift this I don't know. I fully understand your reluctance to take another raft of meds. I would be same as can't wait to drop majority of mine. I would give it a while longer and see if you improve.
Yes Thanks Judy. . I've said before I don't feel very heroic but in fairness Gary and I took a step into the unknown undergoing SCT and I admire anyone who has the courage to see it through. It certainly challenges you both physically and mentally but I wouldn't deter anyone from doing it because this miracle of modern science can be a life saver. X
Currently in NZ , guess I have been lucky so far and I know quite a few others with mixed fortunes, some doing brilliantly. We all share one prize; continued life.
Minor in comparison to you guys, but on day 9 of cold/throat infection that has slaughtered me. So some can get back to being normal but also know it when infection comes to call.
Yes Chris you're right about the pesky infections, they hit us hard. I too am battling a persistent cough which had for fortnight . It did seem to be going a couple days ago but has returned with vengeance. But as you also rightly say we share a most valuable prize. I have seen some fellow transplantees at clinic come and literally go.
Enjoy NZ my dad says it's a wonderful place. Cheers
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SCT journey update No.4
Start of SCT journey
ASXL1 gene detected
