Site Newbie Bicuspid AV repaired, low EF now

[westkane]

First day on the site - interesting content. On 9/24 I underwent surgery for severe aortic regurge at a top notch leading cardiac hospital. It was initially thought that I would need a David procedure but it turns out that a BAV repair Aortoplasty and resection of the ascending aorta was performed, no need for the David procedure. I was on bypass less than 1 hour. (At the time of surgery TEE showed good valve function with no leakage) A week later when I was discharged I was informed that my EF had dropped from a 60 to a 35. They told me I was a CHF patient and told me to get a cardiologist near home. (I find it odd that they did not assign a CHF specialist to follow up with me.) The cardiologist at discharge said he hoped it would get better but did not offer any explanation of why the EF dropped. Put me on Lisinopril, metoprolol, Lasix and aspirin. I located a cardiologist near home, explained the situation, he performed an echo and confirmed that my EF was low (37%) and the heart was not functioning as well as it should, plus the echo shows moderate leakage. GRanted it has only been 4 weeks since surgery, but simple tasks leave me out of breath or dizzy. I can walk well on flat ground but inclines are trouble. I am a W 46 year male, non smoker. Looking up all this stuff on CHF has me rather concerned, plus my limited capacity is frustrating. Any ideas/explanations/comments from you fine folks on my situation? I was rather active and now I am rather limited. The local cardiologist also is hoping that my EF will icrease with time and I will get somewhat more normal in activities, but I wish I could understand why I went in with severe AV leakage and now I have moderate leakage with Heart Failure, rather depressing. I welcome and comments, thoughts so I can become more knowledgeable about my condition. Thanks a bunch At least I get to start Card Rehab next week

 

[Ross]

Hello and welcome to the group.

How enlarged was your heart before surgery? It sounds to me like someone let it go too far.

 

[WayneGM]

Ooops....looks like you followed my advice in the other thread before I gave it.

BMac - Dr. David was my surgeon and I have nothing but praise for him, his staff, and the care I got at Toronto General. You are in great hands!

 

[Debster]

First day on the site - interesting content. On 9/24 I underwent surgery for severe aortic regurge at a top notch leading cardiac hospital. It was initially thought that I would need a David procedure but it turns out that a BAV repair Aortoplasty and resection of the ascending aorta was performed, no need for the David procedure. I was on bypass less than 1 hour. (At the time of surgery TEE showed good valve function with no leakage) A week later when I was discharged I was informed that my EF had dropped from a 60 to a 35. They told me I was a CHF patient and told me to get a cardiologist near home. (I find it odd that they did not assign a CHF specialist to follow up with me.) The cardiologist at discharge said he hoped it would get better but did not offer any explanation of why the EF dropped. Put me on Lisinopril, metoprolol, Lasix and aspirin. I located a cardiologist near home, explained the situation, he performed an echo and confirmed that my EF was low (37%) and the heart was not functioning as well as it should, plus the echo shows moderate leakage. GRanted it has only been 4 weeks since surgery, but simple tasks leave me out of breath or dizzy. I can walk well on flat ground but inclines are trouble. I am a W 46 year male, non smoker. Looking up all this stuff on CHF has me rather concerned, plus my limited capacity is frustrating. Any ideas/explanations/comments from you fine folks on my situation? I was rather active and now I am rather limited. The local cardiologist also is hoping that my EF will icrease with time and I will get somewhat more normal in activities, but I wish I could understand why I went in with severe AV leakage and now I have moderate leakage with Heart Failure, rather depressing. I welcome and comments, thoughts so I can become more knowledgeable about my condition. Thanks a bunch At least I get to start Card Rehab next week

Hello! My mom had a mitral valve replaced 2 years ago. She waited way too long and now she has chf issues. What has really helped her is Coreg, and she has a bivent pacemaker. Her EF has gone from 20-25% to 55%. She can do a lot more now. HAs your cardio given you any other medication ideas? Any other thoughts? Please keep us posted and best wishes..Deb

 

[westkane]

Ross and others

Ross and others

To all, thank you so much for your support and assistance. Ross, I am not sure how big my heart was, but 6.5 sticks in my mind. In so far as a timeline for the echo and EF fractions, I had one in July and August and was 58-60, The one 5 days prior to surgery was a 60, and the echo at discharge had me at a 35, with a local follow up echo at my cardiologist was a 37. We have not yet tried any other meds, he wants to see how I respond to rehab, but have an appt with him on Nov 9th. Thanks again and God Bless

 

[Ross]

They left mine go too long and it enlarged too much. The damage is irreversible and I too have CHF problems.

 

[BDMc]

Welcome

Welcome

And sorry you are having these troubles/complications. I hope you are able to find some effective treatment, and some answers! Brian

 

[Nancy]

My husband lived with CHF for many, many, many years. It was kept under good control for the most part. He did pass away last december at age 75, but not from CHF.

He had to stay on a very strict low sodium diet and was also on diuretics. He weighed himself faithfully each morning to make sure he had not gained sudden fluid weight. If it went up suddenly, then we called the doctor for instructions for additional diuretics.

You can live a very long time with it. You've got to have excellent doctors who care about you, and you have to be able to get ahold of them frequently, because it's a managing thing, and takes a great deal of finesse on the doctor's part.

And you have to be willing to be disciplined enough to not get into too much trouble with high sodium meals.

We bought a lot of foods online from sources that specialized in low sodium foods.

Joe didn't miss out on too many things that he liked. I learned to make almost everything w/o sodium, and it tasted good too.

He also got a pacemaker that helped.

BTW, I think a lot of people have fluid problems for some time after surgery, and you are not even a month out of surgery, rather early on for this kind of surgery. You may find that things improve as you become more active. The hospital stay just by itself will add a lot of fluid because they are always pumping IV fluids into you there.

Try not to get discouraged. Just take it one day at a time, try to keep as active as possible, doing a little more each day. That and medications will help.

 

[Natanni]

My husband had his BAV replaced in 9/2005. He was 35 at the time, had cardiomegaly (very enlarged heart) severe AV regurg and was post endocarditis. At the time of surgery EF was around 54. At 12/2005 his EF had dropped to 35%. He was not told he was in CHF, but they had hoped for better. They did feel that the degree of heart enlargement he had it would take a long time to remodel. Fast foward 7/2006-completely normal size heart EF up to 54%. Nathan was definately quite limited in his activities at one month post op, and he had quite a few over-dos as well.

 

[briansmom]

Please keep us posted with your results and findings. I do not understand how it could drop that suddenly and am interested in what other docs will tell you. Please look into the Coreg. My son is on it and they tell me that it can be a miracle drug. I agree with the others, that you should find a good cardiologist and possibly consult with another surgeon. Your current docs do not seem to be taking this very seriously.
Also, as Nancy said, watch your salt intake. It makes a big difference in how my son is doing. My son's current EF is 42 (it had dropped as low as 28). He works about 20-30 hrs per week and goes to school 2 nights a week. In other words, there is life with a low ef.

 

[Mary]

Welcome to valve replacement . . . sorry it's under the present set of circumstances. I've read your posts in several threads, and a few things that you're experiencing, trouble me.
The first is your drop in EF. I agree with Rachel that common sense shows that something occurred during surgery. When I read BMac's comments, "In reading about repair & looking at the studies this type of result, while not common, did occur. From what I read, it usually occurred immediately, when coming off the cross clamp so it could be addressed while you're still under." I wonder if this is what happened in your case.
The second issue is your wanting your records and not receiving them promptly. Sometimes it takes awhile for the report to be read and dictated, but once it is, you should have access to it immediately. You may have to pay for copies, but it is a small price to pay. You might not understand the meaning of the values, but you can, and should, learn what they indicate. You need to become as well educated in your OWN heart matters as your doctors, and it is probably better if you know more. You are your own best advocate.
Finally, I don't think the diagnosis of CHF should be assumed to be true. You are only a month after surgery, and many things will change as time progresses. I would actively pursue getting a copy of the echo done the week after surgery and compare it to the one the cardiologist ordered a month later.
The good news is you will be undergoing cardiac rehab and that should be very helpful in recovery. And of course, the other good news is, you found us!
Please keep us posted on how you are progressing.