Increasing medication

[Caseyangel]

Good morning. I have chronic heart failure and dilated cardiomyopathy. Still don't know why? It could be because of a family history but could also be because I'm a carrier for Duchenne Muscular Dystrophy, which both my son's inherited.

Sadly my oldest son passed away just before his 19th birthday. My youngest son, who fantastically is now 37, has just been diagnosed with dilated cardiomyopathy and chronic heart failure. He has been started on Ramipril and just one week ago was started on Bisoprolol, both of which he is fine on.

Should he be increasing his medications. GP not following him up and hasn't got an appointment with the Muscular Dystrophy Specialist and first time seeing a Cardiologist for another 3-4 months.

Has anyone heard of the carrier being affected in the same way like this.

[Calliope153]

This is a very specialist question but you might find this link informative although it does not focus on carriers:

musculardystrophynews.com/h...

I hope it helps but really you need to discuss this with the consultant: no one should comment about medications unless they are a qualified medical professional and have worked directly with Duchenne's. Ask your GP if he can refer your son to his consultant for an appointment sooner than the one he has as his medications have changed, Your youngest son is doing amazingly well and he must have had terrific medical and family support to date -don;t lose confidence in your medical team who have helped him this far. My best wishes for good health for both of you.

[Caseyangel in reply to Calliope153]

No one has helped him other than me, no family support at all. The only person who has helped over the last 7 years is his respiratory physiotherapist who got him seen in Leeds as our GP and local hospital don't specialise. Just seems a long time to be reviewed

[Calliope153 in reply to Caseyangel]

This link may be able to advise you more than anyone in this forum can and there is a helpline:

musculardystrophyuk.org/get...

[Caseyangel in reply to Calliope153]

Thank you everyone it has really helped x

[Shar28]

Hello, I’m sorry to hear about your boys. I don’t know anything about their condition but my husband has Dilated Cardiomyopathy and we find the Cardiomyopathy UK website and nurse helpline really useful. If you haven’t already discovered it I’d recommend taking a look and speaking with their nurses to see if they can answer your question. Here’s the link

cardiomyopathy.org

Best wishes.

[Caseyangel in reply to Shar28]

Thank you that's so kind of you.