I think my husband may be deteriorating

[WorriedAboutDCM]

There’s no real point to this post, other than perhaps for people to share their experiences.

My DH had heart failure, diagnosed more than 15 years ago.

He is on a lot of medication and had to stop working more than 10 years ago. This helped stabilise the decline, but his particular heart failure is not one you recover from, you live with it.

He has zero energy, and sleeps lots on top of nighttime sleep - think two or three naps a day of at least one hour a time. He doesn’t have energy or appetite for eating (I suspect he may also be depressed).

He is getting more breathless, looks extremely gaunt and is a greyish colour. He has lost about 6kg in the past month, and wasn’t heavy to begin with.

A lot of this has been linked to an infection he has about six weeks ago, but he simply isn’t recovering. There’s no oomph in him at all, and he is struggling with motivation to do anything, and anything he does is at a snail’s pace.

He gets v good care from our GP, and is getting a number of extra tests now to see if his heart is managing to cope.

There is a strong genetic element to his heart failure. Most men in his family have died in their early 60s. He’s outlived his dad (he was utterly convinced he wouldn’t) but I think he now thinks he is in an unavoidable decline.

As I said, he is getting decent medical care and tests, so I am not worried about lack of care or possibly things being missed. I do worry how much is physical decline and how much is him wilting as he expects this is where he is at.

Sorry, this has been a big long ramble.

I'm sorry to hear that.

I expect the heat isn't helping either.

It's good he's getting good care. What about you?

I presume the DCM in your user name is dilated cardiomyopathy? I have this as does my brother and my mum died from it at 63. When was your husband’s last cardiologist appointment? In my experience so far they are the specialists and can give the best advice etc tailored to you. Does your husband have a heart failure nurse? I think this is by area as my brother does but I don’t. This must be a real worry for you. Have you got a good support network?

Thanks both.

Yea, dilated cardiomyopathy- he does have a consultant but has been stable for a while so hasn’t seen him or the heart nurse for a few years. GP is assessing results and may well arrange it.

Probably need to push to get back to more specialist care just to rule out the DCM worsening. Has he had a recent echocardiogram to measure ejection fraction? As @DisplayPurposesOnly said the heat probably isn’t helping.

He might need a change of medication. Some new ones have been approved recently that work much better, so definitely worth going back to the cardiologist. I would also push for general blood tests, vitamin and mineral deficiencies, thyroid function, inflammation markers etc

I’m glad he’s getting some further assessments to review his condition and hopefully they will look at his medication and see if there are changes to be made.

At the moment he has 2 factors against him. Firstly he’s had an infection which can take its toll, and secondly the heat can have a major impact.

Does he have a fluid restriction/is he on diuretics? Because having to maintain that in 30 plus degree heat can be a challenge, and in response can lead to tiredness, especially if he’s fighting off an infection as well.

Remember that heart failure is a term, not a death sentence. And when you’ve lived a normal life for a long time it can be difficult to deal with bad days. But everyone with these conditions has them. It doesn’t have to signify the end.

F
Is he on the cardiomyopathy UK group on FB? There are a lot of understanding people on there, and a heart failure nurse on during the week who is hapy to answer questions either on there/by dM or over the phone.

FWIW I have hypertrophic cardiomyopathy and have been in heart failure for 6 years. For the most part I am living a normal life. But occasionally I am so tired I call it heart fatigue, and I have no choice but to go and lie down. And while it doesn’t happen often, when it does I have wondered whether this is the beginning of the end, the end for me being transplant.

And the more normal a life you’re living, the harder it is to cope when you have a bad time. Because for the most part cardiomyopathy is just a term if you’re not struggling. Iyswim, and when you have a bad day/week/month you’re suddenly reminded that actually this is real.

How are things going with your husband @WorriedAboutDCM ?

Thank you for asking @petalpower - he is a lot perkier this week with more energy. He’s half way through tests and will then have a review to see what’s going on.

I’m a lot less worried than I was last week!

Keep pushing for the consultant my friend was diagnosed at 34 , five years ago. Her treatment, drugs have improved since then she says

Contact his consultant secretary and ask for a review. The GP is not an expert - he needs reviewing by a cardiologist with expertise in DCM.

I don’t have much to add, but I absolutely agree you have to push and push these days for medical care. You have really good reason for your DH to be under the care of a Consultant- do not take no for an answer!
I wish you all the best.

Glad your husband is perkier but I agree with the other poster who’ve said to push for a consultant review.

Hi all, I thought I would update for all who were kind enough to reply.

He’s had all his tests, is being moved on to new medication and getting lots more ongoing supervision. They are also talking about some surgery, and he is being referred to an even more specialist cardiology team.

I feel his GP acted well when I finally got DH to go, and that the NHS is doing it’s marvellous thing, lots of tests, proposer follow ups with local consultants and heart function nurses and a clear path way - all in all, while a decline has been identified, it is being managed.

Thanks everyone.

It sounds very hard (on you both, in different ways). I hope you're bearing up

Thank you - weirdly, this is our normal, so I am not as shocked as you might think, even though he is being referred to the transplant team.

Just seen your latest update @WorriedAboutDCM. That’s good news that there’s a clear pathway of care and that things are moving forward with treatment. Take care of yourself too.