Congestive Heart Failure Help

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lucky401

Active member
Joined
Mar 30, 2008
Messages
41
Location
Ambler, Pennsylvania
I had aortic valve replacement with a bio root and aorta replacement due to an anueryism and a mitral valve repair along with a repair to a hole in my heart in June 2008. I never felt like I recovered well with exercising (walking) for any real distance being difficult. Then in November 2008 I couldn't even climb a small amount of stairs or walk a short distance without being short of breath. Finally I got diagnosed with congestive heart failure. My EF was 20%when I was diagnosed. Now I am better with an EF of 35% and go to a heart failure clinic once a month as well as see my cardiologist every 3 months.

I was wondering if this has happened to anyone else who had a lot of heart surgery. I also wanted to know if anyone knew of a forum for cardiomyopathy like valve replacement.com.

I still have trouble working out and can't walk on the tread mill for much more than 20 to 25 minutes at a pace of 2.7 miles per hour. I was able to do more and walk faster before my surgery. I am disappointed about my difficulty with exercising and it has now gotten to the point that I don't even feel like exercising anymore. Fatigue is always a problem - I think it is mostly due to the medications I am on and so it is hard to push myself.

I am hoping someone knows of a forum that is available to talk about the problems of heart of failure.

Thanks.
 
Thanks for the link Ross. I am on the following meds. The clinic is keeping the doses low because I am very small - 4' 10" 115 lbs. and large doses drop my blood pressure way too low. They are increasing my doses but very slowly.

coreg - 6.25 mg twice a day
Diovan - 80 mg twice a day
Spironolactione - 25 mcg once a day
Digoxin - 125 mcg once a day
aspirin - 1 tablet daily
lasik - 20 mg as needed

Are you on the same meds? I am hoping the heart failure is due to a virus because the docs say if so I have chance to fully recover. My cardiologist was thrilled with my latest echo showing a 35% EF. So am I and I definitely feel better than I did when I was first diagnosed.

I just have such a hard time trying to motivate myself to exercise and do things around the house after work now. I work a full-time job as an administrative assistant as well and am tired at the end of the day.

Thanks for your help.
 
I'm on
Diovan HCT 80/12.5 1x daily
25mg Spironlactone 1x daily
Metolazone 2.5mg 2x daily
Lasix 40mg 2x daily
Atenolol 50mg 2x daily
Potassium 40meq 1x daily
Asprin 81mg 1x daily
Coumadin 42.5mg weekly
Colchine as needed for Gout
Valium 10mg at bed time to help with insomnia
Advair 250/50 2x daily
Albuterol inhaler as needed
Oxygen 4LPM 24/7/365
Ferrous Sulfate 325mg 2x daily

I'm tired all the time. I can do some things, like get groceries, cook some food, then I'm ready for nap. Breathless with minimal walking and excercising is out of the question for me. The only excercise I can get is walking around the stores and that about ends it for me. Tried running the vacuum on several occasions and I just get so breathless that I can't complete the job. It sucks.
 
Ross thanks your story helps encourage me to get something done before I am at that point. Presently my LV is mild enough that on my echo it was called normal.
 
Ross,

I am so sorry to hear your heart failure has limited your activities so much. I am grateful for not having as severe symptoms as you experience. I am on coreg and I was surprised to see that you do not take that. From what I've read and from what the heart failure clinic people tell me coreg is a huge drug in treating heart failure and has helped so many people. I certainly don't know much about it though.

Do the docs know what caused your heart failure? Do you go to a special heart failure clinic like I do?
 
Mine is combination of not having had surgery soon enough, then the surgeries I have had have weakened other organs, specifically kidney's and then of course the enlarged heart. No, I'm not going to any clinics, just my regular PCP and Cardiologist.
 
Dr. Constantine Athanasuleas in Birmingham, Alabama has developed a Surgical Procedure to improve Heart Function for patients with CHF.

Google his name and you will find MANY links to his background and articles he has written.

He is now affiliated with the University of Alabama at Birmingham where he performs many types of Heart Surgery.

'AL Capshaw'
 
Ross,
I see you take Atenolol. Have you ever taken Toprol XL? I really have trouble with it. I became very short of breath and stopped it. I continued with the calcium channel blocker. I was wondering if Atenolol would be a better beta blocker to take.
 
marilyn said:
Ross,
I see you take Atenolol. Have you ever taken Toprol XL? I really have trouble with it. I became very short of breath and stopped it. I continued with the calcium channel blocker. I was wondering if Atenolol would be a better beta blocker to take.
Click to expand...

I was put on 50mg of Toprol XL per day after my last OHS but I could not tolerate it at all even when the dose was reduced to 25mg per day. I felt really sluggish, my BP was in the 80's & 90's. The doctor finally took me off of it completely & I was like a different person altogther. I have been taking Altace (Rampril - generic) for 3 years now & I have been doing just fine on it.

Altace, BTW, is a beta-blocker; you might ask your doctor about it.
 
Marilynn,

I just copied this exert on Rampril (generic for Altace) off of a site I was just in FYI:

Ramipril is used for the treatment of congestive heart failure (CHF) and hypertension (high blood pressure). Ramipril also prevents heart attacks, strokes and deaths due to heart disease in patients who have risk factors for such events.
 
Well this interesting. I was on Ramipril for about 6 months after surgery. I was not told I had CHF or high blood pressure. I was under the impression that with Ramipril and Metroporol (sp) the two worked together on keeping my heart rate low so the heart could heal. I'm off both of these meds now. But I'm now wondering .............

Sorry if I have hijacked this thread with my thought.
 
marilyn said:
Ross,
I see you take Atenolol. Have you ever taken Toprol XL? I really have trouble with it. I became very short of breath and stopped it. I continued with the calcium channel blocker. I was wondering if Atenolol would be a better beta blocker to take.
Click to expand...

My Doctor is not a fan of Toprol XL for the very reasons you sighted. He doesn't want to give me any more reasons for further respiratory distress then I already have.
 
Dear njean,
Thanks for the information about Altac. I was put on Toprol XL for fast heart rate, angina, BP. It is good to know there is a beta blocker that helped you. I got so short of breath with Toprol, plus felt bad, and mouth felt like I had sores in it. The breathing got really bad. I stopped taking it, which I know is not what one should do. I am still taking the calcium channel blocker. I had my valve replaced and several grafts which are filling up. I am totally confused with it.
 
I was originally on toprol xl and my cardio changed me to coreg. After being on coreg about a year, I asked to go back to toprol. While on coreg, I felt too fatigued all the time. Toprol gives me some fatigue but not as bad.
 
Al,

Thank you for information about the doctor in Alabama. His surgery helps people with a different type of heart failure. I have dilated heart failure and my doctor thinks its from a virus. He said if it is from a virus I have a chance of my heart recovering. So far it is better than it was in November and I am grateful for that. Whether it is due to the medicine working or the heart is actually improving my doc doesn't know and he isn't about to stop the medication at this time.
 
lucky401 said:
Al,

Thank you for information about the doctor in Alabama. His surgery helps people with a different type of heart failure. I have dilated heart failure and my doctor thinks its from a virus. He said if it is from a virus I have a chance of my heart recovering. So far it is better than it was in November and I am grateful for that. Whether it is due to the medicine working or the heart is actually improving my doc doesn't know and he isn't about to stop the medication at this time.
Click to expand...

A grandaughter of someone I know developed CHF from a Virus this winter. They were even discussing transplant. Forutnately, she seems to be well on the road to recovery. Hope yours comes to a similar happy ending.

'AL Capshaw'
 
Ross said:
Cardiomyopathy or enlarged heart. Mine wasn't taken care of soon enough and has left me permanently damaged. Cardiomyopathy is just one of the problems.
Click to expand...

Yeah,you pretty well explained my situation also..its really difficult to exercise
when you can't breathe,and then if there is weight gain from it , it just gets
worse.
I find that I can bike ride easier than most types of exercise and I try to keep
the water retention to a minimum. When I was on metoprolol,I thought that
this med was causing me to have more fatigue as it affects some in this way,
but with me, there wasnt much difference when I stopped taking it.
If you can,try to keep active even if its not the exrcise you would like,
keeping active helps and heart failure has been known improve with some.
Good luck -
 
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