My husband who is 45 years old has been diagnosed with dilated cardiomyopathy, likely as a result of previous chemotherapy treatment. Six months ago he had an ejection fraction of less than twenty %. Now, due to a cocktail of meds his ejection fraction is up to 36% which I think is classed as moderate heart failure. When we first saw his cardio nurse she said to focus on quality of life which was shocking for us. When we saw the cardiologist and mentioned this comment and how it shocked us, what exactly is the rough prognosis, he said right now my husband is referring to meds and that's good and right now he is generally fit and healthy and said something like it's hard to say how it progresses, every is different.
I just feel so very confused. Are we talking one year, five years, ten years, twenty years...? The cardiologist said that the first stage is meds, then a device inserted and then the final stage is a heart transplant but that we are not at that stage. When I look online at heart transplants some people can live up to twenty years with them. Let's say my husband needed a transplant in ten years and it was successful perhaps he could live for another thirty years from now. But he may not get a one, I imagine there's a huge waiting list.
What will out future look like? I have no idea.... Could he be ok on his meds for the next year, five years,longer...?
The nurse told us to only look on the British heart Foundation website and not to Google on other sites. But I don't feel the BHF tells me a lot. The stories on there are either of much older people who are living a good quality of life or younger people but who don't have the condition my husband has but a different heart condition.
I don't know what my question is, I just wonder has anyone got any experience out there if dilated cardiomyopathy or heart failure and your experiences. The good and the bad. No one can tell me anything upsetting as on my low days I imagine the worst.
I feel like I am going crazy, this massive bombshell dropped on us but I feel I also don't get what any of it means for the future. I get nurses and doctors can't say a time for prognosis but a bit more detail would help us feel more in control as at the moment it feels we have no control.
Thank you for reading what has ended up being a very long essay.
Any responses would be hugely appreciated, thank you x