Hi everyone!
It's 11 months since I posted anout Dad's AML diagnosis. What a ride. 4 Chemotherapy cycles, Sepsis, 20kg lost, Stem Cell Transplant, Heart Failure, COPD, dialysis and Stage 4 GVHD but here we are!
It's been tough but it feels tougher than ever. I'd love some advice on how I can help him now.
He came home 7 weeks ago after 5 weeks in hospital getting his GVHD under control. He came home on steriods so had reasonable energy, a great appetite (yay!) and pretty full lungs. Now he's been weaned off the steroids (GVHD very mild now) he's back to being lethargic, weak and breathless and it seems to be getting worse.
He's fallen over twice this week and couldn't get up alone. How can I help him? He's lost all his muscle (he was a kitchen delivery man before his diagnosis) but has heart failure so we're struggling to build him back up. His weight is now stable but he's skin and bone. He's getting frustrated and feeling miserable about himself. He can't do anything he did before so he's suffering mentally and feels a burden.
When we reassure him that he is definitely not a burden, he doesn't believe us. I want to start helping him improve rather than exist (gently of course) but don't know where to start.
Do you guys have any tips?
Thank you
Hi again Jurph and oh what a year your dad and the family have had.
I am sitting nodding my head looking at his post Stem Cell Transplant (SCT) Journey this was basically me way back in Oct 2015. Although I have NHL the SCT journey can be very similar (hit my Community name for my long story)
The post SCT recovery can be demanding but he will get there. We do actually have our dedicated Stem cell transplant group where you can connect with others who have walked the journey. You may want to join the group, have a look at the discussions and consider introducing yourself.
You will see from my story that following my second Allo SCT I was in a wheelchair, I had lost so much muscle mass I just could not walk, fell over lots of times but regular physiotherapy and exercises at home got me in my feel snd back walking after about 4 my nth seconds. I had lost 27kgs but was not eating so we were using a high protein diet (little and often small plates/cups of food) and I got there, yes it took a few years but I am over 6 years out and living as good a little few that any 66 year old will live.
You may also find this thread Life after a SCT - A Survivor's Guide helpful. It does go down rabbit trails but the is the post SCT life for you.
Haaoy to chat more on this thread or in the SCT group ((hugs))
