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Original poster

DH in intensive care after stem cell transplant

326 replies

Lalaland50 · 08/02/2022 01:19

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 posts:
WeAllHaveWings · 09/02/2022 21:05

I cant remember all the details because it was over 15 years ago, my brother was critical in ICU for a month after his stem cell transplant to treat non-hodgekins lymphoma, we were warned more than once over that time we were going to lose him, then he would improve a bit before failing again. It was like a roller coaster from hell, but eventually he recovered and is still in remission. I would listen to the oncologist-cardiologist and haematologist as this is their specialist area.

Wishing you all the best at such a worrying time.

RandomMess · 09/02/2022 21:12

So sorry it wasn't better news today Sad

You are all in my thoughts Thanks

foxgoosefinch · 09/02/2022 21:17

Ah OP what a difficult day, i’m so sorry. Really hoping for better news for you tomorrow. We are all thinking of you and your lovely husband and family xx Flowers

userxx · 09/02/2022 21:19

How unfair, am sending positive thoughts and best wishes 💐

foxgoosefinch · 09/02/2022 21:20

@prettymum thinking of you too and your family - hoping your brother improves soon xx Flowers

Original poster
Lalaland50 · 09/02/2022 21:55

@WeAllHaveWings - thanks for sharing your experience. I'm so glad your brother made it - this is why my DH is there now - for Non-Hodgkins lymphoma/ allo stem cell transplant. Do you know why he what it was about the transplant that landed him in intensive care?yes, It is a horrendous roller-coaster.

I find it so crazy they don't know what is wrong with his heart and how uncommon this is. I don't understand why no medication is working.

OP posts:
prettymum · 09/02/2022 22:01

@Lalaland50 thinking of you, your husband and your family, hopefully the medication available will help him pull through this. It's so hard not being able to be there and knowing it's all out of your control. He's in the right place and we're so lucky with the care available to us, he can pull through this xx

Beachbreak2411 · 09/02/2022 22:05

Sending you lots of love. Prayers for your husband and you all.

Frazzled2207 · 09/02/2022 22:06

Thinking of you, your poorly husband and children tonight Flowers

AlternativePerspective · 09/02/2022 22:18

So sorry things aren’t looking better today.

WRT the AF, it can be complicated. If there is fluid around his heart then that may have an impact on his heart rate etc, and the higher the heart rate, the more likely it is he will slip into AF.

The thing is that there are multiple medications for AF, and what works for one might not work for another and so on. Also, some of the drugs have fairly traumatic side effects so if the benefit of the drug doesn’t outweigh the risk of the side effects they may not attempt those at this stage. Electric shock is an option they can definitely consider, and they will if they have to. I’ve been shocked out of AF and I’ve also had to take several cocktails of drugs. The one I’m on currently is the only one which has worked for me, but the downside is that it can damage the liver, kidneys, lungs and thyroid, so it’s possible they may not want to risk a loading dose of a drug like that if his organ functions are already compromised.

The dr saying that he’s not going to die yet is a positive.If they thought there was no hope then they wouldn’t be trying to do these things. Unfortunately miocarditis isn’t an uncommon result of serious infection, but when it happens it is traumatic.

Also, heart function is just a number at this stage. The echo will produce something called an EF which stands for ejection fraction. This is an indIcation of how effectively the heart is beating, and how severe his heart failure is. Try not to worry too much if they say he’s in heart failure. It’s a term bandied around like confetti these days and essentially means the heart isn’t being as efficient as it should be. And while it is serious, it doesn’t necessarily equal an immediate death sentence.

WeAllHaveWings · 09/02/2022 22:28

@Lalaland50 sorry I honestly cant remember the details, he wasn't in the best of health before the transplant as he had already gone through chemo/remission 3 times over 12 or so years and his body was knackered. He was just months off 5 years in remission when it came back.

I remember there were lots of infections and talk of organs at risk of failing, the inside of his mouth was just a mass of ulcers and he had to get tube fed for weeks after, was on high dose morphine and out of it for most of the time. It was a very slow recovery in ICU, and I can remember the feeling of wishing they could just do something now and quicker and them trying different treatments and drugs to find the right ones for him.

nether · 09/02/2022 22:30

I don't have anything useful to add, just wanted to let you know there's another random person reading this and sending all positivity possible to you, your DH and all your family

AgathaMystery · 09/02/2022 23:01

So sorry to read this update. I hope he has a quiet, uneventful night & that you get a few hours sleep x

Original poster
Lalaland50 · 09/02/2022 23:50

@crosbystillsandmash - yes, that's really helpful, thank you.
So glad your best friend is doing so well.

OP posts:
Original poster
Lalaland50 · 10/02/2022 00:10

@AlternativePerspective - thanks, that was so informative.

Everything you've said rings a bell - i think i do remember the dr mentioning fluid around the heart causing more of a problem - is this then connected to the kidney function?

They said that the ejection fraction was much worse than it was on sunday and that it was generalised and all over rather than in one area, which indicated myocarditis, which is what they think is causing the AF. It started at 150 on Monday and is now anywhere between 120 and 130 and they can't get it down. They keep on saying how worried they are about this, and it just panics me - I just hope that the big dose of steroids will help to bring down the inflammation - if it's even that.

OP posts:
Original poster
Lalaland50 · 10/02/2022 00:15

Thank you everyone for your prayers and positive thoughts. It's keeping me going and I believe that my DH will feel it too.

OP posts:
peachgreen · 10/02/2022 00:20

I'm so sorry OP, such a horrible, scary time for you. My DH was in the ICU in 2020 with sudden heart failure caused by dilated cardiomyopathy. Unfortunately ultimately it wasn't a good outcome for him but what I will say is that of all the causes of heart failure you can have, myocarditis is one of the most treatable. I remember thinking that if DH was in heart failure that was it and he couldn't ever possibly come out of it and get better, but actually that's not true - it IS possible to improve the heart's function. And also please remember that there are more major treatments they haven't brought up yet, from defibrillation to a transplant. There are options.

DH actually did recover enough to come out of hospital and his ejection fraction improved a lot - the medications can be very effective.

You have all my sympathies. Of everything I've been through in my life, the time DH was in the ICU was by far the most agonising and horrendous. You are going through the very worst thing. Sending a handhold from here.

Original poster
Lalaland50 · 10/02/2022 00:30

@peachgreen I'm so sorry about your DH. It sounds horrendous what you went through - it is agonising. Thank you for the advice, I appreciate it.
I hope you are managing Ok now. Flowers

OP posts:
Somebodylikeyew · 10/02/2022 01:03

Thinking of you Lala. Really hope he turns a corner tomorrow x

peachgreen · 10/02/2022 01:10

That's very kind of you Lala, thank you. I'm doing okay.

Your DH is in the best place right now. The big danger with any kind of heart problem is cardiac arrest (that's what happened to my DH) and when he's being monitored so closely a) it's much less likely to happen and b) if it does, they'll be right there to get his rhythm back to normal. So as terrifying as it is, he's safest where he is. Hope you manage to get some sleep. Flowers

mummykel16 · 10/02/2022 01:23

@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.

Reading that puts a lot of things in perspective, I have no advice but you have all my prayers and best wishes that things improve for you and your family.Daffodil
AlternativePerspective · 10/02/2022 07:30

Everything you've said rings a bell - i think i do remember the dr mentioning fluid around the heart causing more of a problem - is this then connected to the kidney function? yes. The heart function is ultimately linked to all the other organs, because if the heart isn’t functioning properly, then it has a knock-on effect towards all the other organs.

They can try to mitigate this by putting him on filtration, do you know if he has this in place? The filtration essentially removes a lot of the harmful properties from the blood which are caused by the kidneys and the liver not functioning properly because of the heart failure, and it can also remove some of the excess fluid as well as the introduction of diuretics.

Original poster
Lalaland50 · 10/02/2022 08:18

They said filtration was an option, yes, but they haven't done this yet.
I just spoke to a nurse who sounded very negative about his prospects- the steroids or new medication haven't changed anything overnight. His heart rate is still going up to 130. I am literally in depths of despair at what is happening - he is only 51.

OP posts:
Inspectorslack · 10/02/2022 08:22

Oh I am so sorry Flowers

Crucible · 10/02/2022 08:33

Another Internet stranger willing good things to happen for your DH in ICU. I wish you all the best.