happy sodding new year.

[misdee]

well, my dh has had flu since b4 xmas. he has dilated cardiomyopathy, and today has been taken into hospital to keep his fluids up as he isnt able to keep anything down. he is on a drip.

good start to the year.

misdee hope he is feeling better soon. Where will he have his transplant, has he been reffered yet to talk about things, if or not? My sister had her heart/lung transplant at Papworth - they were excellent, let us know how things are going. Thinking of youxxx and well done on your decorating!

So so sorry misdee, its not fair at all on you all, keep strong and we'll all be hear to listen. It is definetly a shit way to start the year. I hope things improve, good luck xxx

this is the really bizarre thing. in june when he had a check up with his specialist one of the nurses had his notes and said to him 'so your on the list for a transplant,' DH was shocked, as we know that transplant is possibility but no-one had mentioned that he was definatly need one. when he looked puzzled, the nurse refused to say more.

he has been upto papworth a few times, mainly for exercise tests, and so far everything seems pretty good, slight deteroation but they dont seem too worried bout it.

harasseddad, we are having a nightmare getting out kids checked. dd2 is being checked over as they have discovered a sound on her heart, but most docs i have encountered have said that they wont need to be checked for this condition. i feel very confused by it all. how is your son doing? most people just say to us 'oh there is nothign worng with dd2 as she looks so healthy'. but then dh looks healthy most of the time (except atm, he looks grey again). DH is having dizzy spells, but then it could be all the different meds he is taking, they said his blood pressure was low the other day so maybe that as well.
sorry i'm just rambling now. btw we didnt make the rest of this month without hospital visits, forgot DH has blood tests yesterday so spent 3 hours down the pathology clinic.

Misdee - I'm no expert and am probably telling what you already know but I thought it depended on whether the DCM was aquired (eg as the result of a virus) or congenital. If its aquired it won't be passed on to dd but congenital may be genetic and so dd would need testing.

All the best to you.

they think it was aquired as he was ill before they found out he had DCM, but the blood tests they did after proved nothing definate. so its all a bit grey.

misdee thats what they do before they put you on the transplant list. They try to leave it till he really really needs one, as his last option sort of thing. Aswell if he is a common blood group type he will most probably get a transplant quicker than someone with a rarer blood type. I would assume aswell that given his age he would be more of a priority, but of course i dont know whether this is true or not. It only took my sister about 4 months to get a transplant even though we had been told it could take years or maybe never. She had even been called once before too, but the transplant was not suitable when she got there. Best of Luck anyway

his specialist mentioned once that ideakllly they want to leave him with his own heart for as long as possible (probably around 30 if he lasts out that long). atm he is just being monitered regularly and on long term meds.
i would type out a list of meds but atm cant remember them all.

Misdee, Luckymum is quite right, if the DCM was the result of illness then the Doctors might conclude that it is not inherited and thus not see any benefit in checking the other family members. But unless they can be very confident that the DCM is not familial (ie inherited) then they should screen all family members for the condition. They may also be concluding that the DCM is not familial in your DH's case, if there is no family history of the condition or history of early sudden death etc. However, this is not in itself conclusive since DCM can arise spontanteuosly in a person (as a genetic fault) and still be inherited in future generations, as in my case.

The Cardiomyopathy Association is very helpful and they have a cardiac nurse you can talk to. Give them a call? I think their advice is to get all family members screened. The screening typically involves an echo of the heart. No big deal. If the doctors cannot be 100 per cent sure that it was the result of illness then I would insist on getting your family checked - better safe than sorry.

Our ds is doing very well thanks, and is asymptomatic (ie. no symptons). However, he is on medication to help prevent onset of the condition. You wouldn't know there was anything wrong with him

Good luck to you all, if you like you can contact me via [email protected] (hope its ok to post email address?)

Luckymum, many thanks for the links, will have a look.

Thanks everyone. DD2 will hopefully be having an echo done soon, we have had a nightmare few months of appointments with her to get referred to the right clinic. the cardiac team from harefield are doing a clinic at the local hospital next month and have been told we will get an appointment thro soon to seem them.

harasseddad, do u get a lot of side effects from the meds at all? DH is complaining of feeling odd atm. he is on spirolactone, fruisimide, bisoprolol, ramipril, warfarin, plus other meds for asthma and anti sickness pills.

Misdee, yes I had bad side effects from some of the ACE inhibitors that they trialed me on when I was first diagnosed, due to intolerance. This included ramipril if I remember correctly. These drugs are designed to drop your blood pressure. I fainted a couple of times because my blood pressure dropped too low. After trying about 3 different ACE inhibitors they put me on Valsartan, which I have felt pretty good on (no more faints). Also on warfarin.

Do feel a bit 'odd' at times and I think this is the condition itself as much as the medication. Not surprised your dh is feeling strange given his DCM and the cocktail of medication he is taking. BTW too much coffee can cause me light-headedness so I try to limit. Also have to avoid too much alcohol (this is so cruel!). DCM can make you feel tired and I have read that it might even cause mood swings. Not that this is a problem for me. Don't even suggest it...!

Good luck with dd2's echo. Remember that even in the unlikely event that they did diagnose DCM, the earlier they diagnose it the better the outlook. I don't think it will come to that though, it sounds like your doctors are pretty sure that your dh's DCM is not inherited. Keep us posted!