GvHD

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Hi Kirsty,

Keep hanging in there. This was quite possibly the toughest part of the whole thing for me. I ended up spending 47 nights back in due to acute GvHD. But please be assured, the body can put up with a hell of a lot and still come out the other side. Do whatever you can to get through this, one step at a time. I’m glad you’ve had mesenchymal stem cells, that is what finally did the trick for me - I’m really hoping it’ll do it for you too.

We’re all routing for you Kirsty!

Greg

Hi Kirsty, first some warm ((hugs))

As Greg says, this is the hanging in time and can truly relate to where you are at. I did not have GvHD following my first Allo SCT.......and the SCT did not work - so take this to be an encouragement

My GvHD following my second Allo SCT kicked in on day 284 post SCT - 3 days after a DLI.

Fortunately it did not have me stay in hospital but I was in every 10 - 14 days for a few units of blood as the GvHD was effecting my Bone Marrow.

This lasted 3-4 months then it was not until day 667 post Transplant before I got to 100% Donor.

We will all stand together to look for a quick improvement xx

Yikes, that sounds really hard. I know GvHD can suck the wind out of sails but i also know its beatable. Don't fret about what you cannot and focus on what you can. We are here for you when you need cheerleaders!

How long until you were home and eating normally from starting your mesenchymal cells Greg? I'm trying to give myself something to look forward to.

Hi Kirsty,

It is almost 3 years ago to the day now that I was re-admitted so it is getting fuzzy round the edges (which is a good thing).

I was nil by mouth for around a month and they had tried increasingly high dose steroids first before they went to mesenchymal stem cells which I think I had two lots of separated by a week. I think food was re-introduced about a week after the second lot. Everything was re-introduced very slowly, it was one new food a day - I think mash potato, Knorr gravy, sliced meat and cornflakes were the first foods. I can still vividly remember those first few foods being the best thing ever - miles better than any expensive meal I have ever had! I think I must have been having one new food a day for about 2 weeks before I was allowed to go home. After then, I had a strict list of foods from a dietician where I continued one new food a day. I would say it was almost 6 months before I got back to eating normally again. It can be a slow road, but trust me, when you get to those first few bits of food, they are the best things ever and they are a really great first step. I was quite emotional. I’m hoping you are getting close to that Kirsty, it is something to hold on to and look forward to. All you can do is keep hanging in there and take things really slowly. I am assuming you are on TPN? Oddly, even though it was the toughest thing I have ever done psychologically (and please look after that side of things - I’m hoping you have good support around you?), the body is getting all the nutrients it needs, so you shouldn’t worry about that. I suffered from a lot of muscle wastage too, but that does recover.

Try and do any little exercise you can - even a few small steps is better than nothing - but don’t worry too much if you can’t. As I said in my previous post, the body can put up with a lot and still recover. All you can really do is hang in there. One doctor said to me, “the body knows what it should be doing, sometimes it just needs time to sort itself out”. I didn’t believe her at the time, but in my case, she was right. All you can do is hold on until your body does the same.

Sending you loads of love and strength Kirsty, I may have forgotten the details but I still remember how horrendously tough it was. Feel free to PM me   anytime.

Greg

He Kirsty

 I was 10 weeks post Allo and at home doing ok apart from GVHD skin problems . From nowhere GVHD of the gut (  temp diahorrea etc and back in hospital, hopefully a “ mini break”)

My only real advice is to ask your nutritionist at the hospital question after question about the tiniest of food drink habits ( I’m eating apples .. long story)

Theyre job really is to get you eating but mine sifting through all sorts of research stuff ( time permitting) . Hopefully yours can too and you take on board some extra info

it's a  horrible time but doable let’s do it!

regards

ray

This was really helpful Greg thanks. I'm getting my third lot of cells tomorrow and yesterday had Turkey with gravy for dinner so they're reintroducing food properly now. Have no idea how much longer I'll be in hospital as I'm incredibly immunosuppressed. Half way through my ECP treatments as well but I do know you can receive these as an outpatient 

Hi Kirsty,

This is fantastic news and a brilliant step forward, I am really pleased for you!

I’m sure they’ll want to take things slowly and see how things go with food being re-introduced so it may be a few days yet before they’ll discharge you.

Re: the immuno-suppression, try not to worry about it too much. I am fairly certain that my GvHD was exacerbated by coming off cyclosporine too quickly, so in many ways I saw the immuno-suppression as a good thing - trying to dampen things down whilst the body settles itself. Of course, it’s important to try and protect yourself from infection as best you can, but try and see the immuno-suppression as a good thing in keeping the GvHD at bay - at least in the short term.

I’m really hoping you have turned a corner now Kirsty and you can get back on the path to recovery. It may be a long, slow road ahead but keep clinging on (as I say in my profile!), you are heading in the right direction!

Please keep us updated as to how you get along, your post-transplant experience sounds quite similar to mine and it almost broke me, so I just want to offer any support I can along the way.

Greg

Great news Kirsty, as Greg has said don’t over think things, you are safe from some of the bugs that are going around and your immune system will start to grow once your team think it’s time to let it or encourage it.

I was off food for a few weeks during my second SCT - nothing to do with GvHD, just lost the desire and lived on soup and custard.

Then one morning I was just wanting breakfast so the kitchen sent me up a roll and double sausage (it’s a Glasgow thing)  xx