CHF, Dilated, LVI, ARF x 3

[Kitten Heart]

I was diagnosed with CHF, dilated cardiomyopathy and a left valve insufficiency 14 months ago.  I am a 48 yr old female with a completely unremarkable medical history.  At the time of diagnosis, the EF was measured at 19%.  I was told that I would not be a good candidate for the transplant list, couldn't survive the surgery and to make plans for my disability and shortened life span.  I must be tough b/c I am still here!  I have been treated with assorted BP meds, mega doses of Coreg (80 mg CR x day) and multiple diuretics.  The EF has improved and my cardiologist doesn't feel that I am "ready" for a surgical intervention.  I have had acute renal failure 3 times in the past year, hospitalized each time, one emergency dialysis and most recently 3 weeks ago.  My problem?  Heavily impacted quality of life.  Without the diuretics, I am more frequently out of breath with minimal activity.  Difficult to perform household chores, significantly abbreviated ability to work.  It feels like my Dr. (whom I generally like and trust) just isn't interested in my QOL issues, however, they are very real to me.  It seems that if I am not in the hospital with a problem, I should be just fine and it simply is not that way.  I am insured but my insurance leaves much to be desired.  I sometimes wonder if that is limiting my access to other alternatives or if I need to just suck it up and deal with it.  Thank you.

[vienna13]

I am sorry I know how awful the 20% I had hard time to go upstairs, but you  had active exercise before, that is the good news. You can get things better for you, because once you were active.
  I so hated the fact I couldn’t walk easily at the beginning. .for weeks, months... the target that was only 10 minutes walk away felt hard to do...going down fast on the stars felt like I was just completed a marathon...more then a year ,even two years my heart was hurting often, sometimes daily....but I walked more and more...hated it. .boring walk when I used to run even not much before DX ...walk felt soo old...I .jealously looked the runners on the street ,started to run in my dream.....BUT I was walking...and 2 and a half years later with around 40 EF I started to run again. It was hard first....20 minutes...more and more up to 5 kilometers (non stop) I was a year later.

4 years ago I thought my life was over!:)
Hope you can start it slowly...even 5-10 minutes is great and build up from there very slowly.....
You can do it!

I would go with less sodium 1600 mg or less, now with normal EF I take around 2000, but for 3 years I kept it around 1600...

[Kitten Heart]

Thank you for the encouragement.  I am not overweight save for the edema.  I do not smoke or drink..  I am on a standard 2 gram low sodium diet.  I take 400 CoQ daily.  In fact, before I became ill, I weight lifted and walked 7 miles a day, was quite the gym rat.  I am not adverse to a bit of exercise and indeed I miss that part of my life, it was a large chunk of my spare time.  I guess this impacts different people in different ways.  I know that someone with a 10% EF can go mountain climbing and someone with a 50% can struggle to get across the room.  If it were as simple as getting off of my butt, I wouldn't feel so lousy because I would a lot rather just go for a walk than go in and out of the hospital, worry about the med bills, worry about my income and worry about being a single parent with two kids in college while heaving for breath, taking 500.00 a month in drugs and wearing a diaper at 48 years of age.  It really is a bit much to take on alone, I must say.  

[vienna13]

Also, are you overweight? Hope you are not smoking and you do not drink coffee? You must exercise to get your EF higher, takes what it takes, you don't want to settle with early death do you? So get up from the computer and keep moving. We all did. My EF was 20%, now normal and I am 9 years older then you. I go for old age. Plus you should try to take coQ10.

[vienna13]

What is your sodium intake  for a day in Milligrams?

[Kitten Heart]

Thank you.  I have observed a limited sodium and limited liquid intake for some time.  Walking is a challenge, certainly,  I do what I can.  I have been instructed to take the a dose of meds prior to exercise to help keep the heart rate lower but honestly, I am out of breath just sitting at the computer.  

[often]

You don't mention sodium or exercise.  I can hear you now...."exercise, I can barely stand"....

Did anyone address the issue of sodium to you?  you should keep it well below 2000 mg per DAY!.  That means no processed,canned, boxed foods...careful choices dining out.  There is sodium in everything we eat.  A celery stick has about 15 mg.  The limitation of sodium is a critical step that needs to be taken in order to get better/feel better.  That and limiting your liquid intatke.  If you have not yet done so....start now.

Try walking   even if it is just a little each day...it will help.