Re: Severe restrictive cardiomyopathy
- Hello Erin
I am sorry to hear of Oreo. It is absolutely right he should be on a
cocktail of meds and these can keep of heart failure for a long time. My Trixi
(apologies to those who have heard her story before:) ) was diagnosed at 3
months old and given a few months to live. This August is her 7th birthday.
She has recovered from a heart attack caused by a blood clot and CHF twice.
Medications are definitely the key.
Learn to count breaths. Wait until Oreo is sleeping and count for 15
seconds then times by 4. Watch how he breathes, note the patterns and what is
normal. Then you can tell if he is starting to develop heart failure. Upt to
30 is normal, 30+ alarm and 40+ emergency . Changes like double breaths,
hard pulling in of the tummy, all those are warning signs.
It is normal to be struggling with the diagnosis. At first I was getting up
in the night to Trixi. But as the weeks pass you become more used to it
and realise they don't know they are sick and they pick up on stress.
Medication becomesa daily part of life. If he eats it in food, great, I feed it in
chicken, in paste, whatever is needed. Can you tell us what meds he is on?
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