Surgeon Questions - Facing Valve Rep

[Aussie Chris]

Have only just discovered this forum. What a great resource!! It is very reasuring to read the posts from people facing similar challenges.

I am 44 and have had mild mitral valve prolapse for 20 years with it monitored every 12 months. On my last visit to the cardiologist the echo showed that the prolapse is now severe, with sever regurgitation. That came as a big shock as I am still very active and the only symptom I had had was I was slowing down in my surf lifesaving swimming times. I have just had a TEE and that showes that both leaflets of the valve go backwards by about 10mm and the advice from the cardiologist is that repair is very unlikely.

The way I see it, I don't have many options. The most likely course is a mechanical valve replacement and lifetime anti coagulant. Are there choices with the mechanical valves?

I am seeing the surgeon in 2 days time and am advised that surgery is likely in the next few weeks. This has all happened very suddenly so would appreciate some feedback as to the the questions I should be asking when I visit the surgeon.

Thks Chris

 

[lilbit]

Welcome
There are choices... I had OHS 5 weeks ago. I had my Aortic valve replaced with a On-X valve. This is one choice for mechanical. And I am very pleased with my choice. Also I know a lot of people have the St.Judes valve. You should definetly look at your options. Here is the website for the On-X valve. Good luck
www.onxvalves.com

 

[Karlynn]

Welcome Chris, I'm glad you found us. We have several active Aussie members. Just a quick question - why do you feel you don't have many options? Has the surgeon discussed both the tissue and mechanical options? Don't get me wrong, I have mechanical (almost 15 years now) and am very happy with it. But there are also tissue options as well. The problem with them is that at 44 you will definitely be facing the degredation and replacement of a tissue valve. A mechanical could last you (and at 44 I'd think you have a good chance) a life time. But you have the need for Coumadin.

As far as mechanicals, there's the gold standard of St. Jude. But there is also a new valve being used called the On-X that hold some promise for anticoagulation that is less "serious" than Coumadin.

If you haven't given this thread a read, you may want to do so http://valvereplacement.com/forums/showthread.php?t=17116

I'm willing to bet that you might find that you were having more symptoms than your body let you think, once you've had the surgery and are recovered. The body has a way of compensating for heart issues.

Best wishes!

 

[Aussie Chris]

Thanks

Thanks

Thanks Christine and Karlynn.
I still have heapsof reading up to do on this subject.

From my early research into the replacement options I was getting the impression that the tissue valves with a life span of approx 15years wasn't the best option as I would be facing multiple OHS's and that should be avoided.

How have you found having to take the anticoagulant? Any problem?

Thanks,

Chris

 

[lilbit]

I haven't had any problems with the coumandin other than my INR is being a stubborn pain in the a** lol.... I was 2.2 which is where I was supposed to be (between 2.0-3.0)for 2 weeks and I went and had my blood draw last Monday and it dropped to 1.6 so now I had it drawn today and will find out tomorrow what my INR is. Hopefully over 2.0. Besides that it is not really the coumandian that is a bother but the low salt/ low fat diet I have to be on per my doctor sucks. I am always in the store for 2 hours label reading...LOL... I am very active 30 yer old before my surgery I rode dirt bikes and ATV and I plan on doing it again once I heal and I can't wait. What I am saying is reading about the active lifestyles of people who are on coumandin has made me realize I do not have to give up what I love, I just have to be aware. Oh yah a I sliced my finger with a filet knife yesterday and it didn't really bleed which I found odd . So I am not sure if this is normal?

 

[Christina L]

Aussie Chris -

Aussie Chris -

Your story sounds familiar.

I was 44 when I had my mitral valve repair.

The first thing I thought of with you - is that I think you should get a second and third opinion. Do you have a mitral valve repair surgeon in Australia who is tops in his field?

Both leaflets of my mitral valve were redundant and floppy. My repair was done by Delos Cosgrove in Cleveland, Ohio - I was sent there by my cardiologist who knew that my valve would be a little more challenging to repair and would need a very skilled surgeon.

Otherwise, I was going to go with a bovine tissue valve if they couldn't repair my valve. I didn't want to deal with Coumadin just yet, although as you can tell by the many posts here on VR.com about Coumadin, it is just a pain, not
a terrible thing to live with.

Good luck to you -

Christina L

 

[catwoman]

Chris:

I've had a St. Jude 3+ years. I was 52 when I had my MVR.
No problems with the warfarin; I home-test. (Can't imagine NOT home-testing!)

I haven't found that I bleed any more than before.

 

[Karlynn]

If you do some reading in the Active Lifestyles forum, you'll see that many of our members that take Coumadin lead very physically active lives.

I don't have a problem taking Coumadin. I home test (something you may want to look into) and really don't give Coumadin much of a thought other than when I test. My life has been very fulfilling and I can't think of one thing I haven't done since being on Coumadin. Okay, that's not entirely true. I'm not going to lie, I'd probably have gotten a tattoo . But being on warfarin (Coumadin) can make for a fuzzy tattoo.

Lilbit - you should get your INR results the same day you test. Getting it a day later makes it a bogus number and they're dosing you off old information. Plus, a lab that doesn't get you the results the same day makes me question how quickly they test the blood. If it sits around for very long the test could be erroneous.

 

[aussiemember]

Hi Chris and welcome - always good to have another Aussie

I also have MVP but with mod/severe regurg at this stage so my surgery is a little way off yet - I also have 2 leaflets involved and was told that a repair was very unlikely. Did the echocardiogram or TEE show any change in the heart dimensions??

Anyway - let us know how your appointment goes - ask all the questions you have - someone around here is bound to be able to help

Regards
Jeanne

 

[lilbit]

Lilbit - you should get your INR results the same day you test. Getting it a day later makes it a bogus number and they're dosing you off old information. Plus, a lab that doesn't get you the results the same day makes me question how quickly they test the blood. If it sits around for very long the test could be erroneous.

Thank you Karlynn..... I will talk to my doctor when I see him tomorrow

 

[Aussie Chris]

Coumandian

Coumandian

I haven't had any problems with the coumandin other than my INR is being a stubborn pain in the a** lol.... I was 2.2 which is where I was supposed to be (between 2.0-3.0)for 2 weeks and I went and had my blood draw last Monday and it dropped to 1.6 so now I had it drawn today and will find out tomorrow what my INR is. Hopefully over 2.0. Besides that it is not really the coumandian that is a bother but the low salt/ low fat diet I have to be on per my doctor sucks. I am always in the store for 2 hours label reading...LOL... I am very active 30 yer old before my surgery I rode dirt bikes and ATV and I plan on doing it again once I heal and I can't wait. What I am saying is reading about the active lifestyles of people who are on coumandin has made me realize I do not have to give up what I love, I just have to be aware. Oh yah a I sliced my finger with a filet knife yesterday and it didn't really bleed which I found odd . So I am not sure if this is normal?

So far from what I have briefly read it sounds like coumandin is worth putting up with I want to get by with the one valve replacement.

How is your recovery going now?

How long were you laid up in hospital?

 

[aussigal]

Welcome Chris...

I am way over the other side of the country in sunny Perth ...

Ratsak as I affectionately call it is really easy once you get over the early days of getting your levels right and learning how it works for you...At 42 I will be on it for a very long time and it really doesnt affect anything I do. I also got a mechanical valve to try avoid extra ops. (didnt quite work ). Although I probably wont need anymore ops. now.

I was in hospital for 11 days but most are only in about 5...I know it seems amazing but its true. I got out of ICU on the Tuesday and was home on Sunday. The healing is surprisingly fast. You are easily tired for the first couple of weeks but this doesnt last too long. I think most members who have a trouble-free surgery are pretty much back to normal by 6 weeks. At almost 6 months post OP the only reminder is the scar, the tiny pink pill each night and the comforting gentle sound of my valve working.

once again WELCOME and ask tons of questions, I look forward to following your story.

 

[Aussie Chris]

Repair vs Replacement

Repair vs Replacement

Your story sounds familiar.

I was 44 when I had my mitral valve repair.

The first thing I thought of with you - is that I think you should get a second and third opinion. Do you have a mitral valve repair surgeon in Australia who is tops in his field?

Both leaflets of my mitral valve were redundant and floppy. My repair was done by Delos Cosgrove in Cleveland, Ohio - I was sent there by my cardiologist who knew that my valve would be a little more challenging to repair and would need a very skilled surgeon.

Otherwise, I was going to go with a bovine tissue valve if they couldn't repair my valve. I didn't want to deal with Coumadin just yet, although as you can tell by the many posts here on VR.com about Coumadin, it is just a pain, not
a terrible thing to live with.

Good luck to you -

Christina L

Hi Christina,

I probably should have been finding out more info before now, but I suppose I was quietly hoping the day would never come.

Initially my reqular cardiologist was advising more investigation to look at repair options. After the TEE another well regarded cardiologist advised it is more likely the surgeon will go with replacement as the type of degeneration I have is likely to continue once a repair has taken place. I seem to be more elastic that normal.

So I just thought I should get together the queries for the surgeon.

 

[Aussie Chris]

echocardiogram or TEE

echocardiogram or TEE

Hi Chris and welcome - always good to have another Aussie

I also have MVP but with mod/severe regurg at this stage so my surgery is a little way off yet - I also have 2 leaflets involved and was told that a repair was very unlikely. Did the echocardiogram or TEE show any change in the heart dimensions??

Anyway - let us know how your appointment goes - ask all the questions you have - someone around here is bound to be able to help

Regards
Jeanne

Hi Jeanne,

They have been monitoring the heart with echo's for years and advised that what they were looking for was the first stage of heart enlargement, as this can cause other problems. Both the echo and the TEE showed that there was no enlagement yet which was good news but that I shouldn't see this as a reason to put off the surgery.

Thanks for the interest and hope your condition doesn't deteriorate.

Regards,

Chris

 

[Aussie Chris]

Major Stuff

Major Stuff

Welcome Chris...

I am way over the other side of the country in sunny Perth ...

Ratsak as I affectionately call it is really easy once you get over the early days of getting your levels right and learning how it works for you...At 42 I will be on it for a very long time and it really doesnt affect anything I do. I also got a mechanical valve to try avoid extra ops. (didnt quite work ). Although I probably wont need anymore ops. now.

I was in hospital for 11 days but most are only in about 5...I know it seems amazing but its true. I got out of ICU on the Tuesday and was home on Sunday. The healing is surprisingly fast. You are easily tired for the first couple of weeks but this doesnt last too long. I think most members who have a trouble-free surgery are pretty much back to normal by 6 weeks. At almost 6 months post OP the only reminder is the scar, the tiny pink pill each night and the comforting gentle sound of my valve working.

once again WELCOME and ask tons of questions, I look forward to following your story.

Hi ,
You could do without those complications on the journey.
Did the Dr's say what brought on the complications?

Pleased to hear that things are now progressing well for you.

Regards,
Chris

 

[lilbit]

So far from what I have briefly read it sounds like coumandin is worth putting up with I want to get by with the one valve replacement.

How is your recovery going now?

How long were you laid up in hospital?

Hello

Well lets see I spent 8 days in the hospital. But the doctor had said I could go home after 4 days if they could get my INR above 2.0 well it took 4 more days but they said that in younger people we store vitamin K in our system and it seems to release. But by day 1 in the hospital I was in a chair and by day 2 I was walking. And by day 6 I was climbing stairs with no help. Just remember after surgery make sure you do the excerises and walk. It makes recovery better if you keep your muscles moving just don't over do it. I did have some things happen. I went blind in my right eye for 10 minutes completley black they said this was due to a blood clot in my corotid artery and that the blood thinner desolved it before any damage could be done. They put a cath done my corotid during surgery so this is where the clot came from. But I have not had that since Thank God. Also I did have occular migraines (light spots in my vision) for about 2 weeks often. Dr, said that this was ok. But those are since gone. And I did get a infection in my incision so I was on Keflex for 2 weeks. But that has cleared up. And my blood pressure was low 90/53 so they took me off blood pressure meds and that made a world of difference I am 106/60 and have so much more energy. And last but not least getting my INR where it should be. But these are minor complications and everyday I feel better and better. I am up to walking 30-45 min a day, I do my own grocery shopping and fun shopping, I can drive again and unfortunatley doing housework again I am so happy with my choice and hopefully god willing I will never need another surgery.Which is a beautiful thing, because from what I hear from people with every surgery after the first there are chances that more complications can arise. Also if you read about ON-X they are doing the testing where coumandin may not be needed. That would rock. But honestly the hardest part I find about coumandian is remembering to take it at the right time everynight. But I am getting used to it

 

[catwoman]

But honestly the hardest part I find about coumandian is remembering to take it at the right time everynight. But I am getting used to it

Christine:
Make taking your pills part of a daily ritual, i.e., with morning coffee or @ breakfast, with lunch or dinner. Set an alarm on your watch or cellphone as a reminder.
Taking mine at breakfast does help me remember.

 

[Marguerite53]

Hi Chris, welcome to VR.com!! I had a bum aortic valve, and am older, so I won't really comment on type of valve from my end. I will say, though, that when you talk with your surgeon about type of valve, please listen carefully to him. There are quite afew on the market. Different surgeons have different styles, different salesmen, different habits, different staff and facilities. When I spoke choices with my surgeon it became very clear which ones he was most comfortable installing. He was very familiar with my top choice (lucky) and said it would be the one he would choose for himself (we are the same age). There were reasons why and he listed them for me and made me ever so comfortable about my choice. The result has (knock on wood) been amazing so far, so that is why I always recommend that once you have chosen a surgeon you trust, listen to his instincts and his experience.

There are certain particulars which tend to surface post surgery. We all get curious about how many hours we were on the heart-lung machine, how long is our "cut", what kind of wires were used (or not used, in my case, dacron thread) to hold our sternum together, will the drainage tubes holes be sewn closed, or just be allowed to heal (we call them bullet holes......nasty things.....but they heal quite nicely). What's the likliehood of my needing a pacemaker, what is a-fib...... to name a few.

Having a good relationship with your surgeon and cardiologist is a great thing. You sound like yours is long-standing and that will truly help you with any problems or questions you might possibly have.

Welcome aboard! The ride is intense, but it's just a ride. Keep up the positive attitude and you will do well. Keep us posted and ask any questions you may have. Starting new threads with new questions is a good way to get an abundance of responses.

Take care! Marguerite

 

[aussigal]

Hi ,
You could do without those complications on the journey.
Did the Dr's say what brought on the complications?

Pleased to hear that things are now progressing well for you.

Regards,
Chris

Yes, you dont really need any complications...mine were totally unexpected as I appeared to be an otherwise healthy patient. It turned out that the muscle on the right side of my heart was thickened and that side of my heart wasnt kicking back into rhythm properly and there was a blood-flow problem. A good thing to know and remember is that even after all the dramas I had for the first few days, I recovered normally. Most here have very few complications so dont get too worried about that.

They will probably send a sample off to patholgy after your surgery. That is when they confirmed I had a "connective tissue disorder".

 

[JohnnyV_46]

MMMMMMMMOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!MMMMMMMMMOOOOOOOOOOOOOOOOOOO!!!!!!!!!!! I got a Cow Valve.....
MMMMMMMOOOOOOOOOOOOOOOOooooooooooooOOOOOooOoooo!!!!!! SOOOOooOOoooOOOoo if you have to have a Valve....It'll be ok with whichever choice you make.....MMMMMMMMMoooooOOOoooOOOoooo!!!!...