DH in intensive care after stem cell transplant

[Lalaland50]

Hi, I'm devastated - after 2 years of treatment after treatment for lymphoma, my husband is in hospital having an allo stem cell transplant - he is now on +day 6 and was taking into intensive care on saturday with inflammation of the heart muscles (myocarditis). Today he had an extremely fast heart rate (190) which has now been brought down to about 138 and I've been told by the ICU doctor that he may not make it. He has fluid on his lungs and chest, and they are trying to get rid of this too. She said it hangs in the balance and he is not going in the direction they would like him to be, although he is stable at the moment. I have been asked to go and visit tomorrow with the kids (ages 9 and 12) - I asked if it was to say goodbye and the dr said not necessarily, but good to see him whilst he is alert.

I am devastated to say the least. I have spoken to his transplant haematologist in tears as i just don't understand how this has happened, and he seems to have a slightly more positive view. So, it's hard to know what to think. Has anyone had this experience before? or been in intensive care and had a good outcome? I can't believe it's come to this and don't know where to turn.

[Note from MNHQ: please read the OP's latest update before posting] www.mumsnet.com/talk/life_limiting_illness/4475712-DH-in-intensive-care-after-stem-cell-transplant?reply=117259682

Oh, lovely, hold on tight.
If that means leaning on other people, do.
You are human too.
I hope the next few days bring you better news.

I'm sorry to hear things have taken another difficult turn. I know a little about this medical treatment, certainly enough to know it's not always a smooth ride; there may be peaks and troughs along the way. Hold on to the fact that the medics will have seen this before, your dh is in good hands and hopefully he'll turn the corner (as he did before) and things will look up again.

But you do need to take care of yourself too. You must be mentally exhausted. Try to rest and let people around you help as much as possible

Thank you. Trying to find something funny to watch on tv...
It's true, we were told it would be a bumpy ride, but never expected heart failure and graft rejection! Not that I know that's what it is of course. And there are options if this is the case. Just don't know how much more he can take - and same with me.
Thank you for the sensible advice.

You are all dealing with so much. It is so cruel that you have been faced with another setback.
Sending more positive thoughts and wishes thst they are able to identify quickly what is actually going on and can put in place a successful solution

I've just read the thread. I really hope things have improved. 💐

Thank you for reading. I guess if anyone wants an update.. my DH is still in hospital. His counts are still flat, and although the dr thinks the donor cells are all there, they don’t know why his bone marrow isn’t functioning. He said it might be a virus but so far, 2 weeks later, nothing has changed. We are waiting a bit longer and will see if his bone marrow “wakes up” and then they may infuse more cells, but there’s no guarantee the donor can donate more, or that this will work. It is agonising, and we are trying to stay hopeful but it is devastating.

The dr think the same virus that caused the heart failure is also suppressing the bone marrow.

Oh I'm so so sorry to hear that. Was hoping you and your DH would be getting on a bit better. Keeping everything crossed for you.

Lala thinking of you and MrLala ❤️

So sorry you're still going through this. Did the hospital freeze any of the stem cells for further infusions? I know this sometimes happens and would at least mean you're not relying on a further donation. Look after yourself: you must be exhausted

I think they don't have any frozen as the consultant mentioned that we would have to go back to the donor and ask them to donate more cells to do a top-up. We are still waiting in case the bone marrow recovers, but I can't see how this will happen. They are also now admitting him back to ITU as they need to do an infusion of something to remove the fluid from his lungs as it is causing low oxygen levels. They have reassured us that it's not because he is very unwell, but they need to try and get the fluid out and it's quicker and easier this way. he is of course, dreading going back in there. I just want another miracle and for his bone marrow to suddenly start functioning.

@Lalaland50 I'm so sorry.
Do you have a named person at the hospital who has coordinated the transplant, who will deal with trying to get a further donation if required? I have a friend who needed a stem cell transplant and she found it very helpful having one specific person who dealt with all the communications around it.

Hopefully it won't be needed and your dh's body will start to respond positively.

I can understand the trauma of your dh going back into ITU but it's positive that the medics have reassured you it's not because his condition is critical, it's because of the treatment plan

I'm so sorry you're having such a hard time. I really hope things improve.

Just checking for any update x x

Thanks for thinking of us @Borntobeamum. My DH was transferred out of ITU at the weekend, thank goodness, and is now back in his room on the ward. However, they are now trying to get the right balance between his heart and kidneys - trying different meds to keep both happy. The transplant situation is still dire and is still foxing the team. They have done biopsies and tests. It might be an immune reaction that is stopping the bone marrow from functioning and we hope to have some kind of plan to work with this week. It's really hard to stay patient - and my DD now has covid so we can't even go and visit. He is definitely struggling and feeling very negative about it all.

Oh my words you’re certainly being out through the mill. I sincerely hope he can get a plan in place and they can make some positive moves forward.
I hope your dd feels better soon.
Lots of good vibes sent your way x x

So sorry you’re having a rough time. I hope there are brighter times ahead

Hi

I'm sorry, just seen your post about your husband. What a worry for you. I hope he will be okay.

I had a stem cell transplant five years ago. Was tough going.

There are a couple of Facebook groups that will be a great help to you:

Bone Marrow & Stem Cell Transplant Support

UK Bone Marrow & Stem Cell Transplant Patient Support

The Macmillan website is also helpful with phone numbers you can call and an online community discussion forum:

www.macmillan.org.uk/

Take care

Hi @Lalaland50 I am just checking in to see how you and your husband are doing? I hope he is doing ok now.

Hi, thank you for the thoughts. I am devastated to say that he died in the ICU on Thursday night after his second stem cell transplant was just too much for his body to take. I am completely traumatised, it was horrendous for him towards the end and is incredibly hard to accept.

So sorry to hear this news @Lalaland50

@Lalaland50 what awful news, I'm so very sorry to hear this. He went through so much and suffered enormously. No wonder you are traumatized.

Holding you in my thoughts and sending comfort and condolences. ❤️

So sorry, my deepest condolences 💐

I’m so sorry 💐

Oh, I'm so sorry to hear that news. It sounds like it's been the most awful illness and no wonder you feel traumatised. You and your family are in my thoughts and prayers.