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

No experience or advice, sorry, but sending you ((((virtual hugs)))). . I hope he will come through this. Saying a little prayer in Ireland for him and you all.

Thank you so much.

Don't want to read and run, but as ex ITU nurse just wanted to say many people do come out of intensive care. Assuming your husband has youth on his side and is not ventilated if he is still alert.. Sorry don't have much experience of lymphoma or stem cell transplant but be assured he will have every intervention available and really is in the best place for him right now.... Wishing the best for you all, although it's almost unbearably tough going through it x

Please try and get some sleep yourself now. You need to look after yourself too. This is such a hard time for your all. I hope the family visit will go well for you.

Oh, I'm so sorry to hear this

I've no wise words but can offer you a handhold and a

Sorry I don't have experience of your DH's condition but have had three relatives in intensive care who recovered.
Sending hugs to you and your DCs. Try to get some rest. You need to look after yourself too

I’m so sorry you’re all going through this, OP. I have a little bit of relevant experience - a family member was taken into ICU with a drug reaction and infection after a stem cell transplant. It was horrendously stressful, so I send you every sympathy It’s often the case that patients are in ICU to help with organ support while they recover from the effects of inflammation or infection after a transplant - my relative was in ICU for two weeks, but was discharged (and made a smooth recovery) after that. I hope that the haematologist is on the more accurate side - they will have seen this many times after transplant where patients need extra support from ICU to help the body combat transplant effects.

It’s incredibly tough to go through this uncertainty and anxiety. I’m thinking of you and your DH, OP; and sending you and your family all good thoughts and prayers xxxx

Thank you so much - this is really nice to know - he is 51 and is not ventilated. He is still alert but on a lot of morphine so dozing off a lot too -and acting "high" as my son put it. The dr tonight just made it sound as if they were sure he wasn't going to make it. His high heart rate is coming down but they still need to get the fluid off his lungs and chest and legs. They also can't give him some of the treatments for some reason and he is neutropenic - although hoping his neutrophils will kick in soon. Do ICU doctors err on the negative? I just feel so confused.

Sorry the above message was for @nearlytweeny

And thank you everyone for your answer. It's a lonely night tonight.

and @foxgoosefinch - thanks, that is also really good to know.

Op I'm so sorry you're in this position. Do you have anyone you can call ? i know I wouldn't mind a call day or night in this situation.

I'm glad you're getting to see him tomorrow and I really hope things have improved and you be a bit reassured. I know you'll be doing your best for everyone else but try and look after yourself too, or ask others to help, or both!

Try and rest even if you can't sleep, drink plenty of water and eat something. Don't worry about anything other than just getting through the night / day.

In my experience I would say most ITU staff attitudes could be described as transparently frank, in the sense there are rarely occasions where recovery can be guaranteed. There are almost always two steps forward, one step back on the journey too, but take some comfort from the word "stable", this is a good word to hear right now..... sorry you are going through this x

Thank you all. I'm just so stuck on her words - I really feel they want me to come in to see him because they're certain he's not going to survive.She even said she would arrange for the kids to see a psychologist...again for me, code word for help them to deal with bereavement. @nearlytweeny yes, he was doing ok up until this morning when the atrial fibrillation happened - the "wrong direction" and I just spoke to the dr again who said nothing has changed from when i spoke to them last at 8pm, and basically to go to sleep...my anxiety is through the roof - this transplant was going to be his cure. I'm so confused. Can the myocarditis be the thing that kills him?

Praying for your husband and your family🙏

The psychologist doesn’t necessarily mean what you’re worrying, I don’t think - it’s well known that the environment in ICU is extremely stressful and difficult to visit, so it’s often the case that counselling support is provided afterwards (many patients have psychological aftereffects from being in ICU so support and sometimes a follow-up ward visit are offered to help people process it). Same for kids visiting a family member in ICU. You may also need some support yourself too, as it is not an environment most people are used to and it can be difficult to process the experience.

Please do ask for any help they can offer - the staff on ICU are normally keen to do anything they can to help, and there are others available in hospital too to talk to if you need some extra support, from the hospital chaplain to Macmillan counsellors.

It can also be really helpful to the patient (esp if not ventilated or sedated of course, but even if sedated too); to see you and hear your voice, so they will be keen for you to come in because of that too.

thank you @foxgoosefinch - that makes sense.

I think in the kindest way, Lalaland, you need rest to cope with the anxiety, and to try and just take each hour and each day as it comes right now, which is a huge ask I know... I'm assuming the unit would call you if there were any major changes so in the meantime I would echo what others have said and try and rest ready for your visit. It might help to write your questions down beforehand too, so you can address them with the staff when you are there and not worry about forgetting anything x

thank you @nearlytweeny, I will - I know I need to.

Keeping ALL my fingers crossed that your husband turns a big corner and continues to improve further. I'm sure they have to err on the side of caution and it would be irresponsible not to let you and your children have the chance to spend time with him while he's alert. They have to make sure you're aware of how serious his condition is but at the same time they're not telling you to come in straight away,
Or that he's in imminent danger of not making it through the night etc.
There are positives to focus on like his temperature coming down, the fact that he hasn't needed to be ventilated and that there are still treatment options - try to focus on these. I'm going to stay positive for you and hope that when your husband recovers, this will all just feel like a bad dream.
Sending you and your children so much love❤️

Here’s a sample nhs document that explains a bit about the role of psychological support in ICU:
www.rbht.nhs.uk/sites/nhs/files/PILs/Being-on-the-Intensive-Care-Unit.pdf

Try to sleep - or at least rest - and look after yourself as much as you can. I’m sending you all love for tomorrow xxx

ICU nurse here - I wouldn’t say the doctors err on the side of being negative, but they do need to give you the full and honest picture of everything that’s going on. There have been some setbacks - the AF and he’s neutropenic in a hospital setting. It’s their job to make sure you understand everything that’s going on and you’re well informed of his progress (be it bad or good) throughout his journey.
It sounds like you’re getting really great holistic care with the psychology referral (nothing to do with bereavement, more sounds like she’s picked up on your anxiety and want to help you cope) and it sounds like this doctor is not only caring for your husband but you as well.

Thinking of you and your family today @Lalaland50 xxx

transplant is not a straight road to recovery and can be many bumps in the road to recovery so hopefully this is just one of those bumps.

It took my daughter 3 weeks to get over 1 in neutrophils so I wouldn't worry about that they will probably give him GCSF to help stimulate neutrophills.

@Lalaland50 take everything at face value and don’t try to read between the lines. I know just how much you want answers, but no one can look into the future so in the kindest possible way, talk yourself down, go with the facts and try try try not to speculate.

Minute by minute. That’s all.

Sorry you're going through this op. You're all in my thoughts x