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

In my thoughts this evening

Thinking of you and your husband and children.
A stem cell transplant is hard treatment.
Hoping you can have some rest.

Adding my thoughts and prayers for you this evening. I hope today has been as stable as is possible in these situations, and that you have an uneventful night.

Lots of love to you all tonight. Hope it’s a quiet night for him and that you get a few hours kip x

Sending much love and strength OP x

Wishing for good things for your DH

Thank you all, I am so touched reading all your messages. I visited him again today and he was more alert - they've changed the pain medication - so at least he's not hallucinating on morphine anymore. He is also now on the steroids, and his heart rate still goes up to 130 but comes down to 110 sometimes- I don't know how quickly the steroids work to bring down the inflammation - and they still don't even know if that is what is causing the AF/ the fast heart rate. Cardioversion is still on the horizon, but they don't want to do it and then it just goes back to AF as they don't know the root cause of it at the moment. The fact he was more alert today, was nice - I just want them to get to the bottom of it all. I don't know how much longer his heart can go at an abnormal rhythm for.

Sending positive thoughts your way OP.

Oh @Lalaland50 - you and your family are in my thoughts💐. Re AF - my friends dh has been in it for 2 years(!)….. treatment delayed by covid. Cardioversion didn’t work so they’ll now try what I think is called an ablation….but he’ll have to wait months for that! Hopefully the steroids etc will work but just wanted to let you know that AF can be a long running thing which isn’t considered life threatening in all circumstances. Sending best wishes xx

I'm sorry your going through this it sounds very scary. My husband was in ICU last year following a routine cardiac procedure that went wrong. It was terrifying and i really thought I was going to lose him. I have no advice at all but wanted to say I'm thinking of you and hoping things start to go the right way x

Morning OP I am pleased he is more alert and in less pain. Hopefully more of the same today.

I'm glad you've had some time with him when he's alert. I've been thinking about you all day, but couldn't find the thread, so was very concerned.

Sending my very best wishes and hopes for you both.

Thinking of you OP, and hoping your husband has had a stable day

So sorry OP sounds so stressful. Sending well wishes for your DH and love to you and your kids.

Your update sounds positive - tiny baby steps to recovery OP

sending all the healing thoughts to your DH, and to you, as you go through this with him.

Just read your thread and wanted to say I'm another one thinking of you

I've been thinking of you all today x

Hoping things are improving for your dh and you -

Hi, I just wanted to say that last night DH's reverted back to normal rate and rhythm and it has stayed like that all night, although the dr said it may still go up and down. This is the right direction now, as far as I can tell, but they still need to check for damage to the heart and his kidneys are also struggling. He is also incredibly confused - it's very disconcerting for us, but I hear this can be common in ICU patients. But the heart literally clicking back into place is hopefully a very positive step (said with caution). Thank you for all the positive thoughts. The messages have been such a comfort to me.

That’s a really positive update xxx here’s hoping he continues to improve

Fantastic news. Hopefully he’s heading in the right direction now.

I'm really pleased to see your update. I haven't posted as I didn't have any experience of this but I've had you in my thoughts for the last few days.

It's good to hear some positive news. Take care of yourself, and hang in there. I hope you have people looking after you.
Fingers crossed for continued progress.

That’s fantastic news. I’m so relieved for you. The confusion is sadly really normal. My DH had ICU delirium - it lasted a few days. I thought he had a brain injury from hypoxia at the time & couldn’t believe he would ever recover but he did.