My son has been diagnosed with DCM after cardiogenic shock and mild stroke. He had Covid and was ill for a few months which GP and A&E initially put down to GORD but it was HF.
He is recovering and out of hospital but struggling with side effects of medications-can these be tweaked? How long can he expect his heart to show improvement? He is 40 years old and infarction was only 10-15%. He is usually very fit, goes to the gym but did drink alcohol and likes his food. He has lost 3.5 stone.
Any advice appreciated. Thanks.
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Titch1963
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Hi there.. I'm 43 and was hospitalised with acute cardiomyopathy in November last year with EF of 13% .. When i was released from hospital they spent months tweaking medication and increasing doses, it does take a long while to get the medication dialled in and increased.
My EF improved to 31% after 6 months. Giving up alcohol/drugs/vapes/caffeine & crap food coupled with the medication probably helped alot.
I would imagine he will be passed over to cardiac rehab after they get his meds sorted, make sure he sticks at it, it really helps.
If any of the meds give him jip, let the cardiologist know exactly how he is feeling and they will deal with it until they find a good fit.
Thanks for your reply. I think shock has kicked in and can't see the wood from the trees but I'm trying to stay positive for him as he is very anxious about the future so every little thing becomes magnified and we both worry!
Yeah I hear ya, I know exactly what he is going through, first thing I did was google cardiomyopathy and thought I would be dead very soon. The medication is great these days so its not a death sentence by any means, but it is a long road both mentally and especially physically.
After a year my meds are dialled in, going to stage 4 cardio rehab now. All seemed to get easier after 6-9 months once the meds are working and you get your head around your condition and learn to read your body.
Nobody has mentioned cardiac rehab-does he need to ask for it? we are finding our local hospital and the main London Hospital he was taken too by critical care transfer don't communicate very well. His cardiologist is in the London Hospital and were supposed to hand him over to heart nurses in Surrey but not heard a thing from them. Only weekly check is his bloods as on warfarin as there was clot in his left ventricle.
They all work different, you should ask your cardiologist about all the next steps, it took a couple of months to get placed with the local cardiac team at first. My first months were all about tests, bloods & medication and generally getting me back on my feet and then I was passed over to a cardiac rehab team with other nurses and cardiologists for 8-10 weeks and then back to my original cardiac nurse alongside a different stage rehab team.
I remember feeling stuck in limbo in the time between hospital release and the first appointment with the cardiac nurse, seems like ages! but once you get all your questions answered and a plan in place everyone feels a bit better.
Thanks. He returned to see the cardiologist within 2 weeks of leaving hospital and now the only appointments he has are with the genetics in January and Cardiology in August yet they said 3 monthly at first so God knows what is happening. I'll get his GP to chase things up when he goes on Thursday. Were you able to return to work? He is self employed in a manual trade but not getting any benefits aside from UC which he cannot live on.
I tried to return but occupational health signed me off, UC put me onto DWP and they classed me as LCWRA and I have been told I can claim PIP which I have an appointment coming up for. Takes the edge off
Ask UC about LCWRA and google "Personal independence payment" have a look if that is fitting for an application.
Tell him the need to put health first, its a long road. Wages are no good to a dead man so dont push yourself too hard.
No problem, most of your questions will be answered on these boards, the community are extremely helpful and there seems to be limitless knowledge on here, so you have come to the right place!
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