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

OP.

No personal experience of stem cell transplant but I’ve been in ICU three times, twice on a ventilator and the other time not but on oxygen, blood filtration, IV antibiotics and some other stuff which escapes me. I had some kind of metal frame around the top of my head which kept all the lines in place that were in my neck 😱.

On the night of the 2nd time I went in they wouldn’t let me have sedation while they inserted all the lines so I asked the nurse if I was going to die, and his response was: “well, obviously are aim is always that we want people to get better,” which was code for “possibly.”

Bearing in mind that the sickest patients go into ICU, so it stands to reason that some may never come back out. But they would only take someone to ICU if they felt there was anything they can do for them, so hold on to that.

In terms of offering support to the DC, ICU isn’t a place for the faint-hearted, bearing in mind that there are going to be other patients in there as well who might not be doing as well as your DH. Although as he’s had a stem cell transplant it’s possible he may be in a side room in isolation. But all the tubes and monitors and oxygen cannulas and whatever else can seem incredibly frightening. My mum for instance can’t even watch news reports where an ICU ward is shown now without. It triggering a response for her, she has to leave the room or switch it off.

The fact he’s conscious is a plus, the fact they have been able to bring down his heart rate is a plus, there are multiple medications they can give for AF, and he will be on strong antibiotics for the miocarditis and may be on filtration to enable removal of the fluid from his lungs.

But the transplant consultants will have seen it all before, because it’s not actually that uncommon for stem cell recipients to get sicker before they get better, on account of the fact that the body’s entire immune system needs to be destroyed to enable it to happen.

So sorry to hear you’re going through this. I have no experience of your DH’s condition but from experience, ITU staff are frank and honest. No need to second guess what they are trying to imply, just ask if you need to know (‘are you suggesting we come in because you don’t think he will make it’).
I really hope your DH pulls through.

Just to say I'm really sorry you're all going through this. I hope things go as well as they can for you.

Sending you lots of love. I hope your DH has turned a corner today xx

I hope things are better today. I had a similar diagnosis to your DH and had a slightly similar thing happen to me. I think the doctor calling you in early is the best way. Your dh is very ill and has picked up another infection sadly. The doctors won’t know which way it will turn and will obviously hope for the best. My family were called when I was ill and to this day I don’t know If it was to say goodbye but I think it was. Oh morphine and sedation he won’t be with it fully he will know you and the kids are there and could talk but he won’t feel pain or be aware much of what’s going on. As hard as it sounds my advice always is prepare for the worst but pray for the best.

Hope things are looking better today. Have you managed to go and see him?

Hoping you manage to sleep a little, hoping your DH turns a corner.

Hi thank you for all your lovely messages. Each one made me feel better. We did visit today - it felt important that we did as although he's drugged up to the eyeballs, I could see him become more "alive" as the kids mucked around and I put on some music for him. I have also now had varying opinions on his state - the ITU consultant was very much - it's touch and go - but the oncologist-cardiologist and haematologist were more optimistic and said he seemed stable and weren't quite so dramatic about it. I detected lots of in-fighting between the departments too - so weird when it's something as important as my husband's life, and they are basically sniping at each other behind the other's back in conversation with me!
I feel less anxious tonight, although I know he is still very poorly. Although I cried on the way home and said I wished he hadn't gone in to have the transplant (he had to - the cancer would have returned) and my DS later told me i was wrong and that he should have had it - it was always going to be bumpy and we have go through it - pretty much what you said @AlternativePerspective.
I know I have to take things day by day, but I guess, tonight I can be more philosophical because he remained stable today.
Thanks all for the supportive messages.

Love prayers and best wishes to you all 🙏🏻

Sending you so much love and strength, it is a shit situation to be in, I hope he turns a corner very soon.

I guess it’s good if the cardiologist is feeling optimistic, and that your husband has had another stable day (despite still being very unwell).
Hold on to the positives. Your job as the family is to have hope, and look after each other. The team on ITU will do the looking after in their usual diligent way - he’s in the best place for someone very unwell.
Make sure you’re eating and sleeping - as best as you can, anyway. It’s hard being a relative in these circumstances and feeling helpless.

Hi. I couldn't possibly read and run. My heart really goes out to you and your children, OP. My mother had lymphoma when I was 17. I still have nightmares about that period of our life. She was 47 at the time, and I can say she's 58 now! It was a terrible journey for her, and for us as a family. My dad fell into pieces. I was angry. She was away from us, in hospital all the time. I found at the time that while many Dr's were being pessimistic, I trusted the most the hematologist, who always had a more positive outlook of the situation, although everyone could tell it was not exactly ideal. I trusted him, I don't know now because he was kind man, or because their expertise as hematologists makes them convey their data in a fashion that's perceived this way by family members. I can't really say my mother has been the same since her lymphoma. But I truly hope that your husband can make it through like she did. I send you hugs. And I will pray for your husband to turn a corner. Xx

@Lalaland50

Hi thank you for all your lovely messages. Each one made me feel better. We did visit today - it felt important that we did as although he's drugged up to the eyeballs, I could see him become more "alive" as the kids mucked around and I put on some music for him. I have also now had varying opinions on his state - the ITU consultant was very much - it's touch and go - but the oncologist-cardiologist and haematologist were more optimistic and said he seemed stable and weren't quite so dramatic about it. I detected lots of in-fighting between the departments too - so weird when it's something as important as my husband's life, and they are basically sniping at each other behind the other's back in conversation with me! I feel less anxious tonight, although I know he is still very poorly. Although I cried on the way home and said I wished he hadn't gone in to have the transplant (he had to - the cancer would have returned) and my DS later told me i was wrong and that he should have had it - it was always going to be bumpy and we have go through it - pretty much what you said *@AlternativePerspective*. I know I have to take things day by day, but I guess, tonight I can be more philosophical because he remained stable today. Thanks all for the supportive messages.

It might help, if you’re getting conflicting messages, to approach the PALS office and get them to see if they can coordinate a single response. They were a godsend when a family was sent to ICU recently

I was wondering how you'd got on. I'm sure he appreciated you all being there. Try and focus on the positive side of the information you got - there's nothing to lose by doing so and everything to gain.

I hope you and the kids are getting some sleep. Remember and ask for help if you need it.

Try not to think of the should haves etc because we never know. In a weird I find thinking about the butterfly effect comforting. Eg my car broke down on the way to see my dying dad. I was devastated and so angry but then maybe if it hadn't broken down I might've been in a crash of who knows? I know that probably sounds a bit morbid but it helps me relax and stop worrying about whether I've made the right decisions about things. You can do your best at the time and that's literally all you can do.

Hoping for a good day today for you and your DH.

My heart goes out to you. A decade ago it my loved one in intensive care. How he survived I will never ever understand. It was a very very long journey. A slog. We were exhausted. It was very hard for me to go into ICU ever again after that. Traumatising doesn’t even scratch the surface.

My top tips:
Keep a pint of water/squash by the bed. You will neglect yourself in little ways and this helps.
Eat one decent meal at least every other day. Even if it’s a microwave thing, make sure it’s a meal.
Try and shower every day.

Sorry you and your family are going through this. My 38 Yr brother is currently in intensive care but due to covid, he was ventilated and has been in an ECMO message for just over 7 weeks, altogether my brother has been sedated for nearly 2 months. Its the most hardest thing my family have had to go through especially knowing there's nothing we can do to make things better. He became a dad 3 weeks before he was admitted and also has a 4 Yr old.
We didn't get the opportunity to speak to my brother before he was ventilated as it happened middle of the night, he just sent a message to my sister in law who dad at this point recovering from birth /covid / newborn/toddler/husband in ICU and missed his call.

Please look after yourself, surround yourself with family and friends. Practically, make sure you have access to bank accounts / bills etc because my brothers situation took us by suprise and my sister in law has had to reset passwords to make sure everything is still running smoothly from those ends. He is in the best hands and they will throw everything they can at him to get him better, take each day as it comes and just make him know that you're all there waiting for him.
The hospital has offered support for all of us if we want to speak to anyone about what we're going through. It's fucking scary, hating waiting around for updates because a lot of the time we hear where things have gone wrong, any positive news we grab on to and just hope that he'll fight through it and pull through in his own time.

@prettymum I'm so sorry your brother is so unwell. I hope you get positive news soon.

How are things today @Lalaland50? I hope he’s still stable and you’re managing to get a bit of sleep.

Hi there, I have had an update - he has deteriorated today - he had another echocardiogram and his heart function has got worse - they were disappointed.Apparently the entire area around the heart is affected which makes them think it is myocarditis rather than a heart attack - but they still don't know for sure as they can't scan him (they'd have to take him to Barts and he's too sick to be moved). He is still in atrial fibrillation and they can't get him out of this.

They have given him a massive dose of steroids, which they had been reluctant to do as he is already highly immunocompromised due to the transplant (only 8 days in) and changed the medication slightly. They hope this will bring the inflammation down (if that is what it is) and resume back normal heart rate and rhythm. His kidneys are also now declining in function.

I am in a nightmare and can't believe this is happening. he was so poorly this time last year, but came out of hospital after 7 weeks, and i didn't think it could get worse than this, but this really is worse.

Can he come back from this? I asked the dr if he was imminently going to die and he said no, so there is that, at least. If the medication doesn't work, they said they can use an electric shock method.

I just feel so sad for him. He's an utterly amazing man and been through so much in his life. Everything that could go wrong for him medically in the last 2 years has gone wrong, and this feels like the (very bitter) icing on the cake. really trying to stay hopeful, but it's very hard.

I'm so sorry @prettymum that you are going through this too.

You’re all in my prayers, OP. So sorry you’re going through this.

I'm so sorry. It must be so incredibly hard. You've been in my thoughts today.

I hope I can help?
My best friend had lymphoma, she wasn't expected to survive but she too had a stem cell transplant which resulted in massive complications and her ending up in icu.
5 years later she's doing amazingly well, she is alive and well and has a future again.

I'm not religious but I will light a candle for your dh, we often did for my friend and we never gave up hope that she would be ok

Oh OP sorry to hear your update, it sounds like they are throwing everything they can at him which is positive; they haven’t just given him up as no hope.

Thinking about you

I'm so sorry OP. I have no advice but offer my sympathy, we're here for you x