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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:
FabricPigeon · 10/02/2022 08:40

Thinking of you all, and wishing you the very best, OP Flowers

DistrictCommissioner · 10/02/2022 08:44

Thinking of your family today. I hope you get good news.

Iwilloneday · 10/02/2022 08:45

I have been where you are and my heart aches for you. So very sorry you are going through this. I can only send love, prayers and keep you in my thoughts. So sorry I can't do more 😞💕🙏🏻

Branleuse · 10/02/2022 09:23

Wishing you strength and luck and a big hug x

AlternativePerspective · 10/02/2022 09:44

So sorry things aren’t progressing as they’d hoped.

As said above, they will always give you the possible outcomes first because then if things don’t improve they haven’t misled you, iyswim.

On the plus (if you can call it that) side, a HB of 130, while absolutely still too high is something which is tolerable until they can bring it down. For context, when I was shocked my heart rate went up to 225, and my internal defibrillator registers a spike if my rate goes over 170.

From experience it’s not so much the increased heart rate as the fast AF which causes the most concern, because the heart isn’t beating in a normal rhythm.

Also on the plus side, he’s not on filtration, not ventilated, and is still conscious.

Obviously I can only speak from my own experiences from a cardiology point of view, and I’m by no means an expert, but knowledge is power.

Arm yourself with any questions you want to know, and any facts you can hold on to.

I.e. is he being given drugs to counter the AF? Is filtration an option, and if not yet, then why not? Is he on diuretics to reduce some of the fluid retention?

Don’t be afraid to ask questions, the more you ask, the more they can tell you. And the more you sound as if you know what you’re talking about, the more honest they are likely to be.

LorelaiDeservedBetter · 10/02/2022 10:05

Sending you lots of love OP. I hope you have support in RL too. Please do lean on others and let them help to look after you. It's so gruelling Flowers

Elsiebear90 · 10/02/2022 10:23

I’m a cardiac physiologist, the fast AF means his EF on the ECHO will be a lot lower than if he was in sinus rhythm (normal heart rhythm), when the heart is going that fast you can’t really accurately assess the pumping function. I think they will be looking to cardiovert him then repeat the ECHO as that will give a more accurate representation of his heart failure, also the fast AF will put strain on his heart so that’s another reason they will be wanting to cardiovert him if they can’t bring the rate down. I think the best person to speak to about his prognosis is the cardiologist, as the myocarditis sounds like the most concerning element at the moment.

Joystir59 · 10/02/2022 19:37

Sending you strength and hoping for a turning point for you both

2DemisSVP · 10/02/2022 19:44

Hope things are moving in the right direction Flowers

GreenFingeredNell15 · 10/02/2022 19:50

Sending love Flowers

Louisianagumbo · 10/02/2022 19:52

I'm very sorry to hear your latest updates. 51 is no age. Hopefully things are just taking a bit of time to kick in and there'll be some improvement soon.
Wishing him and you all the best. x

NatriumChloride · 10/02/2022 20:00

I’m sending you so much love and keeping your dear husband in my prayers and thoughts tonight, OP. I can’t imagine what you must be going through.

poolblue · 10/02/2022 20:01

Wishing there is a positive outcome here. So hard for all of you.

DontKeepTheFaith · 10/02/2022 20:09

I’m so sorry for what you are all going through, keeping everything crossed he starts to improve soon💐

51 years old is so young really, life can be so unfair sometimes. I hope his relatively young age is to his advantage in terms of improving his chances of recovery.

Cissyandflora · 10/02/2022 20:36

I am thinking of you and sending a little prayer your way. I hope that your husband is doing better today. I can only imagine how dreadful this is for you all. I hope you’re ok.

Riseabove · 10/02/2022 20:52

Thinking of you op xx

EffortsToBuild · 10/02/2022 21:04

I'm so sorry you're going through this.
Thinking of you, DH and DC's and sending love and positive wishes to you all.
Flowers Flowers Flowers

Knitter99 · 10/02/2022 21:05

Saying a prayer for your family tonight.

My nephew had a stem cell transplant 8 years ago. The first 6 weeks after were hideous, he had so many problems I couldn't keep track of them, in and out of icu I think 3 times in total. But slowly after 6 weeks he turned a corner and now he's amazing.

I hope your dh's heart problems can be brought under control and his body can start to accept his transplant.

Heidi451 · 10/02/2022 21:07

Sending a prayer for your man to come through. Much love and thoughts for you and your family. Flowers

Cantchooseaname · 10/02/2022 21:14

You guys are facing such hard times. Sending you positive thoughts and strength to face it all.

Elderflower14 · 10/02/2022 21:14

Sending positive vibes and prayers ❤️

2018SoFarSoGreat · 10/02/2022 21:21

so sorry you are all dealing with this. It must be horrendous Flowers

Sending you, your DH and DC virtual stranger hugs, and prayers for a good outcome.

Ellowyn · 10/02/2022 21:35

Could they perhaps use a extracorporeal membrane oxygenation machine (ECMO)?

NinetyNineRedBalloonsGoBy · 10/02/2022 21:38

I've been where you are now OP, also with young dc. Sadly for my DH it wasn't a happy outcome but he was much more sick than yours when he was admitted to ICU (his cancer was already stage 4). Sending you love and strength

Tana433 · 10/02/2022 21:39

Sending prayers and positive vibes to you and your family. Im so sorry you are having such a horrendous time.