Heart Failure Support Group

In the beginning I suffered some depression. But I prefer to live my life and go on and do the best I can. I don't wallow anymore. And I'm learning to live the "new" normal. I don't think about prognosis, because that means nothing. My doctor told me I could not turn my kidney failure around. As of Friday, my kidneys are normal for now. I never thought I could clean my apartment again. But 2 weekends ago, I was able to. Yes, this disease has caused me to face my mortality, but I am moving on with my life and I intend to be around for a long time.

Depression is common with CHF, and many of us do need to vent. I got diagnosed in March, and am still struggling greatly in the emotional realm.
What are your "stats"? Do you have a good cardiologist? How about a good counselor?
:o)
--Jessy

31% EF my heart injury is classified as idiopathic. But one of the theories is aspartame could have caused it.
I did not tolerate ACE drugs so I am on lasix and toporil. I am so weak and shakey most of the time. I get severe body aches and don't know if it is from the lasix or recent steroid withdrawal .
I have other conditions, RA and Cushings syndrome from the steroids. It took nine months to get off of steroids! And I think about going back on them everyday. But they caused the cushings,etc.
I do not have high blood pressure or cholesteral.
What happened to your heart?

Sounds like we've got some stuff in common. They figured out that I have dilated cardiomyopathy after 7 months of scratching their heads at my constant illness. My EF in March (2 days after my honeymoon, mind you) was 25% and they hospitalized me for a few days. They label the issue as idiopathic, but I have 3 things that could have caused it--
1. it apparently runs in my family
2. I was sick for a long time and it could have been viral
3. a month later they found that I have systemic sclerosis (CREST syndrome--an autoimmune disorder that has some similarities to RA), which likes to attach the heart, lungs and kidneys.
I'm taking Coreg, Lasix, Spironolactone, Cozaar and aspirin for my heart. I recently started Plaquenil for my joint inflammation. I am very vocal with the doc that I don't want steroids or any immunosuppressant. I hope that I can keep it that way!
:o)
--Jessy

I too understand the depression issues. I found out about my CHF in April. I am 48 years old and just became empty nester with my husband of 30 years. It has been a great time in our lives until this happened. I already had some depression problems previous, but was doing very well with medication. But I feel the spiral some days once again. I just joined this support group last week because I need to know others are feeling the same way I am. So, where do you go from here. I've decided one day at a time. I had a friend recommend a thankful journal, which sounds cliche', but it does help take the focus off of the disease, if only for a few moments and makes me think of all I have to be thankful for.
I wish you all of the best.

MY HUBBY HAS CHF AND I FINALLY CAME TO THIS CONCLUSION, IF HE SHOULD DIE DURING THE CHRISTMAS SEASON, I WILL LOOK AT IT LIKE THIS, IT WAS/IS HIS FAVORITE TIME OF YEAR, HE LOVES CHRISTMAS MUSIC AND DIED DURING HIS FAVORITE TIME OF YEAR. I COULD LOOK AT IT LIKE IT WOULD RUIN OUR CHRISTMAS CELEBRATIONS, BUT I WOULD RATHER LOOK AT THE POSITIVE SIDE OF IT. INSTEAD OF BUMMING OUT OVER IT, CELEBRATE THE TIME OF YEAR AS HIS TIME OF YEAR. AND THIS IS ONLY TO SAVE MY MIND!!! WE TAKE LIFE ONE HOUR AT A TIME CAUSE WE NEVER KNOW WHEN HE'LL BE BACK IN THE HOSP AGAIN. HE WAS DIAGNOSED IN MAY, 10% HEART FUNCTION LEFT, AND I'VE BEEN UPSET SINCE THEN.( AND BY THE WAY, I HAVE BAD EYES AND USE CAPITAL LETTERS SO I CAN SEE BETTER, I'M NOT YELLING AT ANYONE :~))) ) I LEARNED EARLY ON NOT TO COUNT ON TOMORROW. WE'VE BEEN TOGETHER FOR OVER 40 YEARS AND WE TAKE EVERY MIN AS A GIFT. HOPE YOU ALL HAVE A GREAT DAY/EVENING. HANG IN THERE!!!

Wow ladies thanks for the insight. Recently I've been more afraid of living than dying!
Yesterday I decided to take 2 mgs of prednisone, which I have been off of 5 weeks. 20 minutes later I felt 50% better and an hour later I was cleaning my kitchen.
Guess the Endo that told me I go off them and resume adrenal function made a mistake!!
I've been praying for renewed strength... not the first time this year
I've fixed myself!

Jessy
Wow, that's crazy. you must have been so tired on your honeymoon.

If you are using aspartame , nutrasweet, any kind of phenyline or phenyltronics... get off them.

they injure that heart and cause immune dysfunction in lots of people.

I happen to be in remission from RA at the moment which is why I was able to attempt to taper off steroids.

my heart is a medical mystery still, like yours. Are you still at 25%?

My last echo in September, I was up to 41%! I am a little worried that I've had a backslide, though. I just had gallbladder surgery, and I'm fearing that the anesthesia set me back. I see the Cardiologist next week, and will be bugging her to get me in for another echo!
I'd never heard of the aspartame thing before. Very interesting--I'm going to chat with the doc about that. I do have about one diet soda a day, currently.
:o)
--Jessy