Thinking of getting second surgery to replace or repair Mitral Valve..thoughts?

[offwego]

Hi Guys and Gals,

I have not posted here in a long time but wanted to share some thoughts with the community to get some support and opinions.

This will be a long post unfortunately but I'll try to keep it as short as possible.

I'm 52 years old and had OHS 6 years ago to repair a leaking Mitral Valve. Back then I had no idea it was leaking until it 'suddenly' gave out. I had ignored the doctors suggestion to monitor it 5 years prior. Ooops.

So when it gave out, I had to move fast and elected to have it repaired with minimally invasive surgery by Dr. Stephen Colvin (now deceased) at NYU in New York City.

The valve went from moderate severe to severe and overall I am doing ok I guess and getting it checked every 3 months or so. I was finally put on 160 milligrams of Diovan which helped and then last week changed it to Diovan HCT (25 mill of diuretic).

My cardiologist said I am borderline for surgery but I am feeling it more and more. WHile I can easily function and can walk for miles at a time and do mostly anything I want. I do not like how I feel. My energy is lower, I hate walking uphill, it's harder to motivate myself, I have just more 'awareness' of my heart than I have had in a long time.

On a stress test I am sure I can do 9 minutes using the Bruce protocol. Big deal..I just want to feel 'normal'. argh.

I recently broke up with my fiancee and am single. I am blessed with not having to work much and have no financial issues. I have a great life and a good relationship with my ex wife to help with my kids (15 and 20).

I saw Dr. Galloway of NYU recently and he too said I was borderline for surgery. I was amazed how much of the decision to have this surgery is up to me. Or at least it is up to me at this point.

But I know my body and I know it's gotten a bit worse. I am calling Dr. Galloway to see him again in a couple of weeks. But he will probably want to do a TEE to check the valve of course.

I guess I am posting here for experience of anyone who has had similar decisions to make as well as opinions on what I should do and when.

I feel like I would want a tissue valve and Dr. Galloway agreed when I asked him a few months ago. He also said odds were against a repair and he would not do minimally invasive approach this time.

By his talking, I would bet once in there he would not attempt a repair.

Any opinions about getting second opinions or different doctors or hospital? Should I look for someone who might be able to repair? Or do it minimally invasive again?

Part of me wants to do this while I am single still and not dating. I dont want to meet someone and have this over my head..

The first surgery and the recovery were brutal. I was at a low point in my life, had no time to prepare and I was hit with heavy depression and suffered quite a bit needlessly.

I also found I had MS about a year later. The MS is as mild as it can be and I take one injection a day to treat it..But surgery and the shock of it, can't be great for MS either.

OK, I think that's it for my first post in so long!

Thanks for reading and God Bless!

 

[Bridgette]

I don't know much about repairs, but having had it repaired already once and the repair not holding up, your surgeon is probably telling you in his roundabout way that a second repair wouldn't be a goer.
Anyway, if you feel like you want to get this fixed now, while you are okay financially, emotionally etc, I think you should go for it.
Pick a valve and do it! Good luck.

 

[offwego]

Thanks for the response Bridgette. I am calling the surgeon on Monday to make another appointment but know he won't have all that much to say other than to order a TEE, literally if I want it..The amount of choice and decision making is great I guess but it's also a bit overwhelming.

Obviously I am not racing out to have surgery next week but I do feel I have to wrap up some business and personal matters in case I will need it..

The idea of months of recovery makes me feel dread of course..It took a year last time but who knows maybe second time will be a breeze. lol..maybe not...

 

[Jkm7]

My Mass General surgeon offered me the chance to try for a repair and he was on the fence as to whether it was possible. We discussed my choice for bovine tissue valve if the repair was not going to be good. When I awoke and learned he had done the bovine replacement, I think I felt more relief than not. My worst nightmare was a failed repair. That was my second OHS and I did not want to risk a rapid redo third because of a bad repair.

As to timing..... Sure sounds to me like you are saying this is the right time in our life to proceed. Trust your instinct and listen to your body talking to you. You know best how you feel physically and emotionally.

Wishing you the best.

 

[offwego]

I really can imagine feeling the same way. I've thought of a failed repair as well. May I ask your age and when you had the first surgery? How as this one compared to it?

Thanks for posting.

 

[lb151]

I had a mechanical replacement 12 years after my repair. My surgeon,who is at Duke,was able to do the mini both times. I see you are on the east coast so if you are able it may be worth getting another opinion. The second time for me was harder I think because of my age. The only problem with getting a tissue valve at your age is you will most likely face a third surgery to replace it. Do your homework.
good luck

 

[Jkm7]

I really can imagine feeling the same way. I've thought of a failed repair as well. May I ask your age and when you had the first surgery? How as this one compared to it?

Thanks for posting.

My first OHS was just about exactly four years prior to the second but was not valve related though ultimately led to my valve problems.

My recovery for both was smooth and bump free.
The moment I first woke from the second surgery, I immediately knew I had an easier time of it than the first. I ate half a sandwich in CICU less than 12 hours after surgery, was moved to step down immediately, walked with four chest tubes still in my chest and the containers on a wheel chair I pushed less than 24 hours post op. I was driving within 3 weeks. Sure, it took about 8-10 months to really feel 'I was fully back' but I was doing everything including walks outside in New England weather from first day home. We traveled, cruised, I was preparing light meals immediately after I returned home. No serious cooking but could fix the salad and 'zap' and serve whatever friends etc had brought us. Washed the dishes. I have a fabulous husband who would happily have done this but I was up to it.


I left the judgement to my surgeon but deep down feared a repair. My cardio sensed my unease and knew I was not upset with replacement. I was firm I did not want mechanical valve. Only my personal choice for my reasons and everyone has to make that choice for their reasons. I made the right choice for me.

Best wishes.... Everyone here will help you in every way possible. They are an amazing group and only those who have 'been there' truly understand.

 

[offwego]

Very good post and I appreciate it very much. it's things like this that help me. Even though my first surgery was difficult to recover from due to reactions with the drugs and a very bad time in my life, I still felt better in many ways very quickly.

I am hopeful and have a feeling the second surgery is going to be easier (knocking wood of course) and the recovery is going to be faster and better.

 

[SR22]

I can completely relate to your amazement at "how much of the decision of getting this surgery was up to me" -- I have been feeling the same way, and have yet to relate to anyone on that. I, too, have been consistently told I've been on the "borderline" for a mitral valve repair for several years, but always advised to "wait and see how it looks at the next appointment". This approach was always frustrating to me, as I was always wishing for a more definite conclusion.

For me, it is only very recently (in the past few weeks) that I have switched to a more pro-active approach on my end and have several surgery consults booked over the next couple weeks. I am making this decision for two reasons: 1) although I am mostly asymptomatic, my shortness of breath is increasing at night making it uncomfortable to sleep, and 2) my boyfriend & I are planning to start a family in the near future and I want to make sure my body is in the healthiest possible condition for a possible pregnancy. On that note, I am also hoping to catch the "time window" for a repair, instead of waiting it out until dire straits and risking a replacement instead (which would obviously make for a much more complicated pregnancy).

So that is my story, and it's comforting to know someone out there sorta feels the same. There is a part of me that almost feels like I'm crazy for voluntarily doing this to myself, but another part of me is hoping that I'm making the responsible choice for myself & my family in the long run.

<3,
Sara

 

[Lisa in Katy]

Why would you consider a repair if your previous one only lasted 6 years? You are way too young to have surgery that often for the rest of your life. You'll never make it to 70! Also, other than a smaller scar, I'm not sure of the advantage of minimally invasive. It seems that there is still pain, sometimes even more, and obviously in your case, the recovery can still be long. If I was your age and having my second surgery, I'd go with a mechanical.

 

[offwego]

Why would you consider a repair if your previous one only lasted 6 years? You are way too young to have surgery that often for the rest of your life. You'll never make it to 70! Also, other than a smaller scar, I'm not sure of the advantage of minimally invasive. It seems that there is still pain, sometimes even more, and obviously in your case, the recovery can still be long. If I was your age and having my second surgery, I'd go with a mechanical.

I'm a bit ahead of myself. But I have and am making the decision to pursue pretty quickly to do the things to set up OHS to deal with the leaking valve one way or another.

I will speak to two top notch surgeons before deciding.

I have no idea if a repair is possible and no one can say as I have not had a TEE and it's pretty much guesswork at this point anyway.

Dr. Galloway was clearly suggesting a tissue valve. I lean towards that as a choice but again really the only thing now that is important is getting my personal life in order asap to be ready to get this taken care of one way or another.

Tough choice but I have a very strong feeling it's going to go sooner rather than later and I am not going to have a choice either way.

I am focusing not just on the fear of surgery or the pain of recovery. I am focusing on positive stories of feeling better and revitalized after having it fixed or replaced with either mechanical or tissue.

The problem is that compared to average heart patients I am probably better than 90%. I can do 9 minutes on the stress test. I feel somehow I am compensating and I feel the valve is worse than might be showing up on tests. Doesn;'t really matter much anyway.

But I am hoping to be speaking to doctors in the next 2 months and planning for surgery in January or February..Nothing is certain yet of course.

Thanks for the posts and feedback. It helps tremendously.

 

[Lisa in Katy]

I was a very healthy sick person too. In fact, although my echo was bad, until having the Cath, my cardiologist didn't think I was ready for surgery; the cath told otherwise. In his words, if anyone suddenly showed up with a heart like mine, they would probably be dead. My body had compensated over the 22 years between Rheumatic Fever and surgery. Being in good shape will help with your recovery. I was walking as soon as they got me out of CICU and feeling pretty good within a matter of weeks. Other than pericarditis, my recovery was smooth.

Good luck.

 

[offwego]

I was a very healthy sick person too. In fact, although my echo was bad, until having the Cath, my cardiologist didn't think I was ready for surgery; the cath told otherwise. In his words, if anyone suddenly showed up with a heart like mine, they would probably be dead. My body had compensated over the 22 years between Rheumatic Fever and surgery. Being in good shape will help with your recovery. I was walking as soon as they got me out of CICU and feeling pretty good within a matter of weeks. Other than pericarditis, my recovery was smooth.

Good luck.

wow! How was your exercise capacity? That's really scary..yikes!

 

[Hot Rod Harry]

I had my second one in 3 years, and this one was much better than the first. Depends on the facility..

 

[Gail in Ca]

Heart is very much better after repair

Heart is very much better after repair

Like you, my cardio and surgeon were waiting to address my mitral valve, since I had already had 2 OHS. It was leaking mod to severe for 8.5 yrs, and I felt it, especially going uphill, hiking, anything like that. My LV was getting to the high end of what they wait to see before doing surgery. They were still waiting even after I got endocarditis. But, I began having SOB and cracking in my lungs after all the treatment for BE was done. So, I ended up having my 3rd surgery, and the surgeon did address the mitral in a marathon surgery. It is now repaired, and I feel so much better. My heart feels like it has never had a problem when I exercise. I am very happy now that it is repaired. My thinking is they want to wait as long as possible because of the risk of surgery? I'm thinking if a surgeon can do your surgery minimally invasive, he/she will, whether repair or replace. I'm sure hoping my repair lasts along time, it is leaking mild now, after surgery. I just can't worry too much about it. I'm sure if I need it addressed again in the far future, I will have it done thru the rib.

 

[offwego]

That's great Gail! I am taking a bit of a break thinking about it but will see the cardiologist and surgeon again before year end and keep moving it forward. I'm wrapping up some affairs to get my life as prepared as I can before I get surgery again.

May I ask how old you are? The idea of my heart feeling like it 'never had a problem' is a great thought. That's the kind of thought I want to hold onto to give me the motivation to get surgery, in spite of a 'wait and see' attitude by the doctors.

Thanks for the post