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misdee, so sorry for you and your dh. I wonder, if it wouldn't be too boring for you, could you bear to run through a small history of your dh's heart failure? My brother's just been diagnosed and I don't have a clue what it means / why it's happening to a fit 40-year-old and what the outlook is. If you can't face doing that, don't worry, I'm scouring the net but sometimes a personal story is more helpful.
I'm fine discussing it, the more coverage it gets the better imo.
dh is 25yrs old, and has had dilated cardimyopathy since he was 22yrs old. he fell ill with the flu in april 2002, the virus attacked his heart, leaving the heart enlarged, not pumping properly, left ventricle valve (i thin kthats right) now leaks as well. He is on a daily course of meds (spironlactone, frusimide, digoxin, warfarin, bisoprolol, plus inhalors for his asthma and his current meds for pneumonia). as his heart sint pumping properly he is at greater risks of blood clots, and fluid retention.
he has been in and out of hospital most of this winter, but thats mainly due to the pneumonia and not his heart. He is now being referred to harefield hospital for assessment for heart transplant as his cardiologist feels he cant carry onwith his own heart any longer.
That's more or less what's happened with my brother, misdee. Although I can't tell you the terminology about what's actually happened to his heart. What I find so hard to believe is that he was fine and then a virus can cause so much damage. Do you think there's a weakness in the heart beforehand? Was your dh always healthy before this? What's his general quality of life like when not suffering with secondary things like at the moment? Has he been able to work or anything like that? Can he get out and about? How are his spirits at being laid so low physically when so young?
So many questions I know. This is all very new to me.
so you brother possibly has DCM as well then? if he does than i can give u some info on where to look. no point directing you to sites if u dont klnow quite what it is.
Generally dh gets a lot more tired and out of breathe than b4 he was ill. before he was very active, always on the go etc. he went on sick leave from work when he was first diagnosed, and actually only handed in his notice back in dec when he found out he was being sent for assessment. it is shocking that a virus can cause this, but sometimes the heart does repair itself, and your brother may have no long term health problems. The heart team may suggest that you and the rest of immediate family need to be screened just in case it wasnt the virus that caused it. Viral DCM is a lot rarer than inherited DCM.
Dh has a great cardiologist who tells it to us straight. she has never told us anything that isnt true.
btw, ignore the sites that tell u the survival rate in years, they are outdated, and medication is coming on brilliantly now.
This is really recent misdee, as in a week since we found out the virus has affected his heart. He was on a ventilator in hospital for 3 days but is now just beginning to rally round. We've no idea of an official diagnosis but it's good to hear your stories. I'll keep lurking round your posts now in search of information.
I'm exhausted tonight so signing off now.
I really truly hope your dh gets well again soon and that the treatment he gets in general restores him to the good health he deserves. It's a cruel blow to be knocked down like this when so young.
big hugs to you mummylonglegs. after going thro this myself with my dh i know how scary it can be. I hope your brother recovers well, and you find some answers u need. the cma site that sally posted is a good one and not at all scary. its one of the best sites to visit if your brother does indeed have DCM.
there are several of my threads on the health board. seach for DCm and you may find them. If you do find your brother has DCm then feel free to CAT me.
shattered. had a 'moment' earlier where everything got to me, my dad was round and said that i cant do everything, but theres only me to do things atm, so what am i meant to do? it was started by dd2 ripping up puzzle pieces. feeli silly now.