Tell me something good! (success with CHF?)

[eperdu]

Hi Guys,

My husband has his first appointment with the Heart Failure and Transplant Program on Monday (he was hospitalized with CHF, EF of 10% a month ago) and I could REALLY use some good stories.

So please, tell me about your success with CHF!  How has your EF improved?  What have you done to beat the odds?  We are terrified of what they will tell us despite the fact that he is feeling remarkably good.

Tell me something good folks!

Thanks so much,
Erin

[gmachris518]

Here's a URL for finding out everything you ever wanted to know about BNP.......

http://www.health.harvard.edu/fhg/updates/BNP-An-important-new-cardiac-test.shtml

Hope it helps.

[eperdu]

Thanks again everyone.

Just wanted to add that I got a call from the nurse today and my husband's BNP level is down to 22!  From what I understand, anything below 100 is normal.  So, anyone know what this means?  from what I'm reading, it means the heart is not dilated, stretched, or burdened with fluid?

[gmachris518]

Don't feel like you're alone with your "disablity", I am at 15-20% and would have a very hard time keeping a full time job.  

Just as a point of interest, though, I went in and talked to the transplant team last week for 5 1/2 hours, and one of the team members I met with has terminal brain cancer.  She was given 12 weeks to live, and she is STILL working full time, with the day I talked to her being a victory day for her....the starting of her 13th week.

Anyway, it just goes to show that everyone is different, I guess.

[eperdu]

Thanks so much guys!!

Neil,  my husband ran before this heart virus, so they told him whatever exercise he felt like doing, he should do (weird I know)...he mostly walks...just short intervals of jogging.  I am very impressed with him though!!

I really appreciate all your kind words and sharing your stories :)

[neil_a]

Hi Erin,

Sorry for the reasons that have brought you here on behalf of your husband.  He is very young.................I feel for what you both are going through.

What medications is he on?

I am 58 years of age - with an EF of 10-15% - since '03.  Click on my name to see more.

I meet again this summer in Boston to review things with a Transplant Team at a major hospital.  And so - you too - will have more knowledge next week after your meetings.

Please - DO - "calm down" and I mean that - in a helpful way because once you do more research - you Will be calmer - because knowledge does have a way of helping relieve the stress of all this.

First see: www.***********.com

Along with my question of medications that he is on.....................................

Who told him that he could "jog" ???

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Re: "tell me about your success with CHF!"

Medications have kept me alive along with lifestyle changes............and in a sense - with no drop in EF over these many years - that to me is an improvement - because we didn't ask for this ailment - and because it's viral - in his case - it isn't that someone and life is doing you a favor - and we can get angry - for where we are today - and for the "why's"

But we've been stricken and we have to assess - at several stages during the course of our day...................

What is the quality of life - for me - right now ??????????????????????????????

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Please allow me to share this story with you.

I happen to be living in South Florida in '04.  I was talking to a staff member of the Transplant Unit at Jackson Memorial Hospital in Miami.

And we were talking EF's and she said to me: " Some of us here do very well with our 5% Ejection Fraction "

My God..................can you imagine that.  That here I was - talking with a woman who worked every day behind a desk - and she has an EF of 5% and here I am - disabled with this since '03.

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It isn't so much - "think positive"

Take a Pro-active approach and research as much as possible for your peace of mind and research even more - after you meet with the experts next week - and ask a lot of questions.  It's your right.

Keep us informed.

Neil

[gmachris518]

CHF by itself is not a killer, but rather a term used to name a group of symptoms.

Your husband can do very well, as long as he is properly treated.  The main treatment would be proper medications to address his symptoms.  Then, if he has any bad habits like smoking, drinking, or eating foods high in sodium, etc, he needs to give it all up.

I've had CHF for about 3 1/2 years, with an EF of 10-20%, but I do fine with it as long as I take my medication, and listen to my body....when it says time to rest, then I rest.  My strength isn't what it used to be, and I tire out pretty easy, but I do have a life.

I'm sure there are people out there who are doing much better than I am with CHF, but I also am fighting stage 5 renal disease, so I feel fortunate that it's not far worse than it is.