Mitral Valve Repair with Cardiomyopathy/ Existing Pacemaker

[okielady]

I am a 56 year old female with cardiomyopathy and have had a pacemaker since June of 2004. My mitral valve is leaking and the ejection fraction in 2004 was 35% and has gradually come down to where I am now at 15% and have been there for a couple of years. The doctors have taken a wait and see attitude because for the most part I haven't had any major symptoms due to this. I have been able to do the things I enjoy like gardening, golfing, walking until the past couple of years and within the last 6 months have really gone downhill fast and can't seem to do much of anything now.
I am scheduled for a TEE on April 27, 2012 and then have a consult with the surgeon afterwards. I had a TEE in 2008 and at the time they felt I wasn't quite ready after seeing the valve function during the TEE, I think my EF was around 25% then. My cardiologist is thinking it is definitely time now due to the way that I feel and the symptoms I am experiencing.
My question is, has anyone with cardiomyopathy and a pacemaker gone through this experience? I got the distinct impression that the robotic repair was my only option. They did say that if they see that if the valve doesn't look like a repair is possible that I will be put in a trial and hopefully can receive a mitral clip. I have heard rave reviews about these but since it is a trial (they aren't FDA approved yet) it will be a randomization and no guarantee that I would get one, I could easily be the one they chose to put on medication instead.
I am pacemaker dependent meaning my heart depends on the pacemaker to do the work, if it were to stop my heart would, too. I have read online that people with cardiomyopathy have handled valve repairs quite well but it makes me more worried knowing my heart isn't 100% going into this and how I will handle the surgery.
I have been a member of this group for the past 4 years and have popped in from time to time. It has been such a help to be able to read all your comments and everyone is so helpful and supportive. I spent half the afternoon yesterday reading the sticky on surprises and loved it and so glad to have all that information before hand.
I would appreciate any comments and know you all will be there in the future weeks with lots of support!

 

[Roberta]

Hi Okielady,

I am sorry to hear of your situation and hopefully someone with a similiar experience will be able to chime in.
Very best wishes to you!

 

[okielady]

Thank you!

 

[okielady]

I have since learned that I am not a candidate for the mitral clip trial because the ejection fraction must be above 25% and mine is below that. I did have my TEE yesterday and have an upcoming appt. with the surgeon on May 2. Hopefully he can give me the answers I am looking for. I will post the info. later.

 

[kfay]

Have you met with a surgeon before over the years, or have you just been dealing with cardiologist? I don't think I would have been comfortable waiting as long as they've had you wait with that low of an ejection fraction. Have you considered getting a second opinion? I'd really want one in your shoes, and I'd want it quickly. I'd also be interested in knowing why you may only be a canidate for robotic repair. What if the repair isn't an option, why couldn't you get a replacement? And if you do need a replacement, which would you choose, tissue or mechanical. There are plenty of people on here who have had surgery on their mitral valve and now have a pacemaker. Good luck this week.


Kim

 

[catwoman]

Okielady:

Just curious -- what type of cardiomyopathy do you have? Did it cause the valve problem?
I heard Dr. Susan Little -- a feline practitioner from Canada -- speak several years ago about hypertrophic cardiomyopathy in cats. She said that when the heart becomes enlarged, it causes mitral valve problems.
I will be attending a symposium in June on feline HCM in Quincy, Mass. The speaker is a veterinary cardiologist from Tufts University. I believe the symposium is certified for CE credit for vets and vet techs. Some information is cross-over to human medicine.

How much of the surgeon's experience is with patients who have multiple cardiac issues? That is definitely something to ask.

My husband had MV repair in 2007 at Presbyterian in Dallas. He had no other cardiac issues.

Good luck with the surgeon's visit on Wednesday.

 

[okielady]

I guess I am assuming some things and I will have some concrete answers when I meet with the surgeon on Wednesday. It could be very possible that he may think that the valve can be replaced if it cannot be repaired. When I very first started having problems and had the heart bloc and had the pacemaker implanted they did find a touch of sarcoidosis on my lung and it can sometimes affect other organs such as the heart. They have never clearly had an idea as to what has caused the problems with my heart other than that. The cardiomyopathy is what is causing the valve to leak. As far as I know the valve is not diseased. The stiffness of the heart is causing the valve to not close properly. At the time the sarcoidosis was treated and I haven't had any reoccurences.
I did meet with a surgeon in 2008 when my EF dropped lower but after having the TEE they determined not to do surgery as I was fairly well symptom free at that time. Since then I have met with my cardiologist and have had echocardiograms every 3 to 6 months, kind of a watch and see. In January I did start retaining fluid and having SOB, tired, etc.
You definitely have raised some good questions and I do appreciate your concern and your replies. I will post later this week with more information. Thanks again for your replies!

 

[okielady]

After meeting with the surgeon I find that he feels robotic is not the answer and we are going with the open heart. Since I do have the heart issues as well he says that he would rather have the open so he can have more control plus the factor that the open heart doesn't require as much time spent on the heart/lung machine. He feels that he can use the ring to repair the valve and that will tighten up that opening. It may not improve the heart muscle itself but it will stop the leakage and should give my heart a break and hopefully improve it. He also said that if the repair isn't possible then he will do a replacement of the valve but I would benefit far greater from a repair so that is what we are hoping for.

 

[Eva]

Have you discussed with your surgeon what kind of valve you he will use in case a valve replacement is needed!?

Good luck.

 

[okielady]

Eva, I have not discussed that with the surgeon and that may raise a lot of eyebrows with a lot of posters but I just truly feel that it is the surgeon's call. He is the one that is going to make the best decision for me at the time and I am comfortable with whatever that may be. The main emphasis has been on repair but he did say that if a repair cannot be made that he will replace.
I see you had your surgery at the same age that I am now. I am still so greatful for everyone and their input and experiences, that has made this ongoing journey a lot easier one to take.
Tomorrow is the day and soon I will be posting in pre-surgery and am anxious to give you the good reports!

 

[Mom2izzy]

I think if the chance of needing a replacement was high enough the surgeon would ask what type. In my case, I asked my surgeon's assistant, "don't you need to know what type of valve I want if the repair doesn't work?"

His answer was..."oh did the doctor give you like a 95% chance for repair? What he really meant was like 99.99%" I did ask him to note my choice anyway because I wanted tissue and was probably still young enough that a mechanical would have been standard.

Good luck with everything!