Dh's dilated cardiomyopathy is getting worse

[mumof6needssanity]

I just need to get this off my chest. My dh had heart failure just after his 30th birthday for 11 years we were lucky the tablets they put him on worked brilliantly and he had no symptoms.
Over the last 6 months he has been getting increasingly tired and breathless, to the point he can't not walk up 2 flights of stairs to our bedroom without struggling for breath.
He saw his heart specialist on Monday who have started him on a new tablet and have said he has to go back in 3 months rather than a year. They have said he will not improve but will get worse but can't tell how quickly he will deteriorate.
When he goes back in 3 months it is also to discuss a pacemaker and going in the heart transplant list.

Where he didn't have symptoms for all those years we both knew he had it but were a bit head in the sand if that makes sense as it did not affect him. Now he can only work 25 hours a week, 5 hours at a time, is always really tired and breathless. It has suddenly hit us how serious this is now.

I am staying strong for him and our dc but I'm finding this very scary and am worrid how much longer he has.

Sorry this is so long i just needed to getting all down. I don't expect anyone to read or reply. I thought this might help so I'm not keeping it all inside.
Thank you if you have read and well done for getting to the end

((((hugs)))) and and well done for staying strong. Have they given you any idea of the likely time span of the progression and if they can reduce the symptoms in the interim.

Hi,
Thanks for replying. No they havnt I couldn't go with him on Monday because of our dc but am planning on going in 3 months to ask those questions.
Dh is shell shocked he knew it was getting worse but has had his head in the sand. His docs saying what they have has made him face up to it and he his now internally trying to deal with it. He is not good at showing his emotions.

Ok so you've had a good 11 years - that's positive because it means they have up till now been able to manage his condition well. They still have treatment options up their sleeve too. You know that this condition is likely to limit his life expectancy but nobody can tell you what will happen to him because he isn't a statistic. The course of his illness is unique and individual. What you should hang on to is how long he has been 'sick' but well. You also have the advantage of foreknowledge that can help you and he with your life choices - what is important to you, what do you want to have done with the dc. If he dies - and there's a very good chance he'll be around for years and years - but if he does, what does he want to leave behind for the kids to know about him?
It's a gift to be able to be able to hope for the best whilst planning for the worst - make the most of it.
Good luck OP :) Look out for a poster called Misdee. I'm sure her dh had the same diagnosis and had a transplant. They've had at least two more dc post-transplant

Hi mrs,
Thank you. Yes you are right he could and hopefully will around for a while yet. I do also like knowing they have other treatments and have a lot of faith in his doctors.
I like what you have brought up about the dc I lost my mum when I was little and would have loved a memory box or similar I will suggest it to him.
Thank you

\link{http://waitingforthecall.blogspot.co.uk/search?updated-min=2005-01-01T00:00:00Z&updated-max=2006-01-01T00:00:00Z&max-results=18\misdee's blog}

3 more children since the transplant (she's also a mum of 6 now)

wishing the best of luck to your DH & family, mumof6

The cma has a wealth of information on their website www.cardiomyopathy.org

They also have very knowledgable and friendly cardiomyopathy nurses that you can ring up and talk to anytime. They are having a big patient doctor information day in Sept in London which you might find useful. I have HCM and have an icd implanted.

Thank you the one I will have a look at her blog.

Ruhrpott thank you for the link I will have a look. Also I am sorry you have heart dease too. How does it affect you. Does the icd affect you day to day? How did they fit it?
Sorry for all the questions

My heart disease doesn't affect me very much. It is pretty stable at the moment. I had an operation to remove the thickened tissue a few years ago and that helped. My Dad died of the same thing at 37 and my sister and nephew have it too. My sister is just being assessed for the operation now as hers is getting worse. My children didn't inherit it (we had genetic tests done). Have your children been checked as I think about 25% of DCM cases can be caused my genetic mutations and can be inherited?

My icd also doesn't affect my day to day life though sometimes it can be irritating just by it being there. Sometimes it aches a bit or itches. It is reassuring though to have it there, knowing if it is ever needed it will spring into action and shock my heart back to a normal rhythm. I can still do all day to day things with it. I fly a lot and it's a bit of a pain telling security all the time and then having a pat down rather than just walking through the scanners. I go for checks ups twice a year. If it did ever shock me I would lose my driving licence for between 6months and two years.

Have you contacted the CMA? I have met the nurses and they are really knowledgable and very approachable and nice. They will answer any questions you have and help you if they can. There is also a CMA group on Facebook that is very active.

Thank you Ruhrpott,
I am pleased your children are not affected by this. Yes my dc have been checked and will be every three years until puberty then yearly until 18 then if still all clear they will be discharged. I believe this is because my dh and I agreed to genetic testing and research through The heart Hospital and great Osmomd street.
I am very grateful for your reply as it is the icd they are talking of for my dh. Hopefully yours carries on working well for you. I did not know about the driving ban if it shocks you but it does make a lot of sense.

I have looked at the website but not contacted them tbh as my ds is having big problems at the moment and unfortunately I am having to out that first as he is dangerous at the moment. We are stuck in a never ending waiting list with cahms.

I will look for them on fb now.

Thank you again I really appreciate it.