GvHD

Hi Kirsty,

I didn’t have any ECP so sorry I don’t have any experience of that, but I think it is a good thing they are being cautious. I only mentioned the discharge date as it helped me to have a goal that I was working towards, but actually you’re right to just think of things a day at a time, especially as the food is still quite new. I think with me the TPN started to be tapered off after a few days of eating, so I’m hoping that happens for you too as it reduces the amount of time you need to be hooked up.

I feel bad about posting to you Kirsty because to all intents and purposes my life is back to normal so it is hard for me to get myself into that place of remembering just how tough what you are going through now really is. So I am sending you loads of love and support, loads of strength, loads of whatever you need to keep plugging away at this. It helped me to think of everything as temporary - the life you are living now can’t and won’t last forever.

All the very best

Greg

Greg your posts have been really helpful just to know life DOES go back to normal is a vital life line. This is only temporary has been my motto over the past few weeks and now that things are turning that corner I'm finding it easy to be more and more positive. And you're right about going home it gives you goals so instead of thinking towards a specific date instead I'm focusing on what I want to achieve before going home so I want to get my strength up, I need to practice using some stairs, i want to be able to shower and dress myself without needing any help whatsoever, I want to know the bowels are well and truly under control (one movement a day the past two days) and then I'll know I'm ready to go home. These are (mostly) things I can work on and control so it's great to have jobs to do! 

And yes the plan is to review after the weekend and reduce TPN to 1000 calories from 1700 if the eating is going well!

Hi Kirsty, 

that sounds so much better! I’m thrilled for you! Go steady, though, this really is a critical stage. But building up your activity will help too. 

daughter found she had a few late effects, asked for a blood test for wheat intolerance, it was negative, but being careful, going gluten and lactose free helped, and she is gradually reintroducing foods over quite a long term to see what, if anything, upsets her. And she is over 7 years post allo! 

Hugs xxx

Hi Kirsty,

I am so pleased that my posts have helped, even if a tiny little bit. Looking back, I really wished I was on this site when I was at this stage as I think I would have benefitted from being in contact with people who had experienced it. I remember at the time reading Google about acute GvHD (don’t do it!) and could only ever find negative stories. Of course, there is never any guarantees with anything, but I am much more aware now of just how many people have had a really rough ride, and still come out the other side. It’s just they are back enjoying their normal, boring (in a good way!) lives so there’s nothing to really write about!

That’s great re: the TPN, I can’t remember exactly but I think that sort of reduction should reduce the number of hours quite nicely, which should hopefully free you up a bit more. It’s all about slow steps (metaphorically and literally) at the moment. You’ve definitely had it very rough post-transplant, but hopefully things are getting back to where they should be, and you can get back to where you should be.

Keep going Kirsty, we’re all with you!

Greg