Heart WeaknessAfter 12 weeks

[SteveHWms]

Hey! I had an AVR in December, and my doc looked at an echo last week and some other data and said that I have "some weakness in my heart." The official diagnosis was Systolic Left Heart Failure :eek: and Idiopathic Cardiomyopathy :eek:.

Has anyone else experienced that after surgery? Is it part of recovering from a malfunctioning valve or is it something that will not improve? I'll ask the doc in three weeks, but in the meantime, I thought I would see what y'all said. Thanks!

[Karlynn]

Welcome Steve! I'm glad you found us. I do know that some members here have experienced what you are writing about and hopefully they will be along soon to answer your questions.

[tobagotwo]

Idiopathic Cardiomyopathy is fancy cardiologist shorthand for "the muscle in his heart is weakening, and I don't know why." It's unlikely that it's directly associated with your surgery, although the recuperation may be making it more apparent. I'm sorry that your recovery has been marred by this revelation.

The only do-it-yourself possibility I am aware of that may help some is 30mg or more of COQ10 daily. It has been tested a great deal, and is at worst harmless. The most favorable testing has been on systolic myopathies, which would seem to fit into your niche.

I have a lengthy interpretational document that I can send to you if you like, which intelligently references a large number of studies, is not associated with supplement sales or bizarre "institutes" hidden in inaccessible areas of the country, and doesn't try to sell anything at the end. It's a dry, professional, and well-written document, with a notable lack of urgency or drama, and I can't help but to give it some credence.

Best wishes,

[SteveHWms]

...Someone in my cardiac rehab class said that his cardiologist said that by using Coreg, (which is what I am on) the heart can be re-programmed to operate with its new configuration rather than attemping to go back to its pre-operative state.

...And, I have been working out pretty hard over the last week with phase II cardiac rehab 3 times a week, biking for 30 minutes to an hour every non-rehab day, and a light free weight workout 5 days a week. I feel like I am getting a lot stronger.

We'll see what the doc says in a few weeks.

[Susan BAV]

Hi Steve - Welcome to the site; glad you found it.

Will you let us know what the doctor says about the cardiomyopathy? My dad was diagnosed with hypertrophic cardiomyopathy many years after being told he "had the heart of an athlete" which we all giggled over at the time because he was fairly sedentary. But the muscular-looking heart was actually his first symptom.

[SteveHWms]

You bet. I'll let you know.

[Bionic Man]

I had the opposite problem. Prior to surgery I was close to heart failure. the muscle was weakening and my heart was .5 cm smaller than the max allowable size. Being on the blood pressure med helped me and my heart got a little smaller (weird i know)... after surgery and cardio rehab it seems that my ticker is a little better off now that the pressure is off of it a bit. Hard to say.

I've heard that your heart can recover completely or at least close to completely given good circumstances and the right nutrients. I wish I knew more.

[Marguerite53]

Hello. Welcome to our forum.

I had no similar trouble post-surgery, so nothing to report there. I'm simply the "mother hen" here, asking you to please consult your surgeon or cardiologist with all of these matters. You have paid a bundle for this surgery. You deserve clear explanations from your attending physicians. Normally, you can call the office, leave a voicemail with the nursing staff. They will consult the physician and then call you back and leave you a detailed message. Oftentimes you can befriend a certain someone at one of these offices and they actually learn how to speak the explanation so that it is completley understandable to the client. Nurses often seem more willing to explain things than the doctors. The doctors don't want you to worry. The nurses want to show off their knowledge because they think they are practically as smart as the doctors if someone would just ask them their opinion. It all works in our favor if you just figure out how to play the game. Please call and ask and get a clearer explanation!!! It's SO EASY!!! You can ask them about the CoQ10, too!

(you guys and your refusal to use road maps when you need directions!! :p :rolleyes: ;) )

Good luck!

Marguerite

[901]

A long time ago, like six years, when I was first diagnosed with heart failure, they put me on CoReg. At the time, my EF was 15% and I had a 3" blood clot in my left ventricle and I was in chronic A-fib (asymptomatic). My Card told me that if my EF went any lower, I'd be put on the transplant list. I went from "normal" to "almost gone" in less than a day!
Four months later, I went to get an ultrasound test and the technician measured my EF at 80%! The Card couldn't believe it, so he ordered a MUGA scan to confirm the EF. The result was that my EF was really only 60%. The Card told me, "I don't know who your God is but you better thank him!" and that "CoReg is an AMAZING drug that we don't know what all its capabilities are, yet."
The down side (or up side, depending on how you look at it) was that the MUGA exam identified a 5 cm AAA. So, I went to the waiting room and got CT scans every six months for awhile to "watch" the AAA.
One day on the way home from the Card office, the Card called and told me the AAA had increased by 1 cm since the previous visit and I needed to visit with the surgeon.
Two months later the AAA was corrected with a Dacron sleeve and a "moderate" AV and "severe" MV were replaced with St. Jude's Regents. The chronic A-fib was was corrected with the MAZE.

[Blanche]

I understand that CoQ10 has worked wonders for many. However, my cardiologist tells me that it can cause blood sugar problems for diabetics and platelet problems for people on anitcoagulation. He has told us to stop taking it. Perhaps the link from the Mayo Clinic will be helpful to you.
http://www.mayoclinic.com/health/coenzyme-q10/NS_patient-coenzymeq10
Regards,
Blanche

[SteveHWms]

Ask someone for help?!? That's what you do when you run out of all other options. It's in the Man Code. :D

[SteveHWms]

I saw my cardiologist today, he was upbeat. He said that I may be on Coreg and Lisinopril for the rest of my life, but that I could do anything I want without restriction (except of course avoiding contact sports due to Coumadin), and he encouraged me to keep up my exercise schedule. He said that after what my heart has been through, it would never be "normal" even if it gets down to normal size and is functioning normally. It would still be damaged from having to work so much harder for years. I go back in 6 months for an echo to see what's happening. Hopefully, they'll see some shrinkage!

I am able to do everything that I did before surgery, including riding my bike 10+ miles a day and working out.

Ok, enough about me...

[aussiemember]

Steve - glad your visit with the cardiologist was positive - enjoy the exercise :)

[kbheart]

I'd be somewhat cautious about the exercise. I was doing great and then had a lot of unexplained pain. They told me that I overdid it on the rowing machine in rehab and I had to cut back. Valve surgery is very invasive and it takes a while to recover. I'd listen very carefully to your body and cut back if you feel pain or shortness of breath. The exercise felt so great that I wanted to keep going full steam ahead but in the end it made my recovery longer. Good luck!!

[Susan BAV]

Hi again Steve. Glad your cardio was upbeat; good news. Take care and post again.

[SteveHWms]

I'd be somewhat cautious about the exercise. I was doing great and then had a lot of unexplained pain. They told me that I overdid it on the rowing machine in rehab and I had to cut back. Valve surgery is very invasive and it takes a while to recover. I'd listen very carefully to your body and cut back if you feel pain or shortness of breath. The exercise felt so great that I wanted to keep going full steam ahead but in the end it made my recovery longer. Good luck!!

Thanks! That's good to know. So far so good, but if I feel pain, I'm going to lay off and call someone. I LOVE THIS SITE!

[SteveHWms]

I have been having some light-headedness, and I finally went to the doc Thursday for an EKG. They cut my dose in half and said they were seeing some V-Tach. Other than that, I am feeling a lot better. Anyone else have this problem with Coreg (if it is Coreg-related)?

[SteveHWms]

As an update -- Heart function is near normal now. I am healthy as a horse. The ticking is a constant reminder of how blessed I am! :-) I still have a little forgetfulness which is really scary (pump head syndrome?) but other than that, I am much healthier than I was this time 4 years ago!

[dick0236]

Congratulations on being able to rejoin the active human race. The "pump head syndrome" will leave you....only to return eventually as "senility":wink2:.

[mainframe]

Steve, still on the Coreg and Lisinopril? I got the same message about "for life" and was wondering if you are still taking it or has your heart function improved enough to go off the drugs?

[Duffey]

Glad to read that you're feeling so much better, Steve. You're definitely on the up-swing!:smile2:

[OldManEmu]

Steve its great to hear that your heart has now recovered.
As for the forgetfulness I found this was just one of a number of side effects I had when on Carvedilol (Coreg).
Beta blockers and I were not a good combination and I am glad to be off them.
You may want to question your doctor on this.