mitral valve repair/replacement

[Christina L]

Hi everyone,

I am new to this board. I found out just this last Friday that I need mitral valve surgery by the end of the year. My valve is of the "worst" variety according to my cardiologist and a surgeon I spoke with. It is called a Barlow's valve, mitral valve prolapse.

I have been crying nonstop for a couple of days. I feel my life is over. I feel no one understands but know that (of course) you people do. I get all the typical statements of "oh, I have to undergo hip replacement soon," and "Just go in and get it fixed and you will be fine."

What really is the prognosis for those of us with replacements and repair? Really?? I'm sorry to be so glum and doubtful, but I hope you can all reassure me that I could go on to live a normal life expectancy, with a great quality of life (which is what I fear most, I think - a poor quality of life and being in and out of hospitals).

By the way, I am leaning towards a tissue graft if I need my valve replaced - I am 44 years of age. What is the percentage of people who choose tissue over mechanical - about 50/50??

I feel lost - please help.

Thanks so much.
Christina L (Chris)

 

[Ross]

Hi Chris and welcome to the forums

First things first. Life is not over and with a repair or replacement, you should live to be a ripe old age. I was 33 for my first surgery and 40 for the last one. Many people go through this everyday. It truly is a life saving procedure and is becoming almost a fine science.

The depression that you feel now...We all did when we first heard about it. Give yourself some time to deal with it and address it, then kick it to the back of your mind and move forward with looking at how much better you will feel after recovery.

It is far from the end of life. It is the beginning of a new life. You may feel even better then before.

Take some time and read through the threads that interest you and if you have any other questions, we are here to help. We all understand very much where your coming from. We have all been there and done that, so please feel at home here.

 

[Nancy]

Hi Christina-

Welcome to this terrific site. It's always a shock to hear about the possible need for surgery. But you know something? Your life isn't over, it's just beginning. This fantastic surgery is a life saver. Once you have it done and have healed, you will be feeling much, much better than you have for a long time.

Allow yourself to cry for a short while, and then arm yourself with KNOWLEDGE about your condition and the nature of the surgery. This is the best place to do it. You can ask all the questions you want. We're all here to try to help you, you can go to the main page and click on the Heart links and find some wonderful resources, and then you can read as many posts as your little head can absorb.

Knowledge is power.

Best wishes, we'll see you often, I hope.

 

[Christina]

Hi Christina,

I feel your upset, because I was the same when I was confronted with having to have surgery. I was scared to death until I educated myself about valvereplacement and what can be done these days. This site and it's people also helped to ease my fears, and gave me strength. The more you know the less you will fear. And you've come to the right place to find out. Everyone one of us has a different story because all of us are different, but we have this in common with you. Most of us have had surgery, but some of us are still in the waiting room. The waiting room is the hardest place to be. Everyone will tell you that, and once you are on the other side of the 'mountain' as we call it, life only gets better.
This won't be the end of your life, because after VR there still is so much living to do.
I am 3 years out of my 2nd AVR, and am doing great. It takes a while to get there, and we all recuperate at our own pace, so don't compare yourselves with others.
I received a mechanical valve, and I think that was best for me as I hope to never have to do this again. It takes a lot out of you and your body, and my surgeon told me that you don't want to do this too often.
I am on Coumadin and have been hometesting for more than 2 years. I never go to a lab anymore.
Come back often, ask away, and one of us will be there to answer most if not all of your questions.
Hope this helps you in some way.

 

[bvdr]

Welcome Christina!

I can't really add to what the others have already said. Please keep reading entries on this site and ask as many questions as you want.

Last week I got a St.Jude mechanical mitral valve and I am doing very well. I will have to be on coumadin the rest of my life but I'm adjusting fine. Give yourself a little time to get used to the idea and spend this time learning as much as you can. We even have some fun on this site

 

[weekycat]

Welcome Christina L!!

Welcome Christina L!!

Hi, my name is Jean. I had my mitral valve repaired a little over a year ago at age 43, (almost 44). I was lucky to have a surgeon that was good at repairs. Both of my leaflets were floppy, (I had two ruptured chords), so it took some doing.

He did say he was 99 % sure he could repair mine, although he really didn't give me a choice as far as a replacement if it would have been necessary. He just said, "there's really only ONE choice for someone your age, a mechanical". I don't think they like to use tissue valves on younger patients because of the chance of having to do another surgery a few years down the road. It made sense to me.

The drawback of course to the mechanical, is that you're on Coumadin for life, which isn't all bad either, according to most of the posters on this board. Incidentally, even if you end up with a repair, you may need to be on Coumadin for a short time. I think I was on it for 8 weeks or something like that. I don't remember my surgeon, mentioning that little bit of info before my surgery. You see, he used an annuloplasty ring to sort of hold it all together, so there's danger of clotting for a time after surgery, until your own tissue sort of grows around it. (At least that's my understanding)

Anyway, things are going quite well, other than this lovely scar going down my chest, but I guess that's much better than the alternative, (I was getting close to CHF according to my doctor.) I had an echo done after one year, and was told everything was working "beautifully", and to come back in 2 or 3 years, so life is pretty much back to normal I guess.

Unfortunately, I only found this wonderful site 2 days before my surgery, and didn't have a lot of time to learn much about what was going to happen. So, if you have any more questions, feel free to keep asking!! Somebody here will more than likely be able to answer them.

 

[hensylee]

Hi Chris - your life definitely ain't over - in fact, by entering these portals, you have just begun a new one. You will find here that for so many vr replacement began life anew and they are so much better now than before. There will be the surgery to go through, of course, but after is what is the biggest part. The before is a bummer, but that's what we are here for. To walk right along with you to make sure you get to the foot of the mountain, up it and over to the good side - with us. Couldn't ask for better than that. You just hang in here and we will help to ease your fears and you will find that your current reaction to all of this is just like everybody else's. Love and God bless.

 

[inventory]

Hello Jean
I, like weekycat also had my mitral valve repaired this past
February with a ring put around it also. I was scared to death but this great site helped me very much. They put me on coumadin and Toprol for about 4-5 months and since my last cardio visit I am now off all meds except a baby aspirin every day.
So far so good. I know it is very scary but after you have everything done you will be very glad you did.
Best of luck to you and please keep us posted. Everyone on here is very interested , believe me.
Take Care
Al

 

[Christina L]

thank you SO much

thank you SO much

To everyone who answered my plea for help in calming my fears regarding my upcoming mitral valve surgery - thank you so much. I eagerly await each response because I know that each response from you guys will build me up a little bit more.

It is rough - I am still having crying spurts and reading too much scary stuff on the internet.

Jean, I am so happy for you that you were able to have your mitral valve repaired. I can only pray for the same outcome for myself. Your pre-surgery valve sounds just like mine. And "BVDR" I was amazed that you just had your surgery ONE week ago (?) and you are sitting at your computer!!

Thank you all for your kind, uplifting words and advice.

I am wanting more advice - what can I do to prepare myself for this surgery? Should I be eating a lot and getting my weight up a bit, since it seems that people lose weight after surgery.

Also, I am considering the Cleveland Clinic and Dr. Cosgrove for my surgery. Does anyone have experience with this facility and Dr. Cosgrove?? I also am considering Montana Heart Institute and Dr. Duran, also a Dr. Gaudiani in San Francisco. Isn't that a must - to get the best surgeon possible??

You all are so sweet - I know I will get to the other side of this mountain with your help. It has to be climbed and I guess I just am standing at the bottom of it still, not wanting to start yet on this journey.

Chris

 

[Ross]

What to do to prepare for surgery? First thing is to stop scaring yourself reading upsetting things about it. Your going to laugh when this is all over and sit and say, "Gee, those crazy people at VR.Com told me this didn't they?"

The best prep you can do is to arm yourself with information. The next best thing physically that you can do is to keep as much normal activity up as you can stand without going overboard. You'll need some strength coming out of surgery. Nothing too extreme, but just normal daily activity. People lose weight mostly for the reason that food taste like junk for awhile afterwards. It takes your taste buds awhile to get back with the program, but once they do, look out!

Dr. Cosgrove and the Cleveland Clinic are about the best, if not the best when it comes to Mitral Repair or Replacement. You want someone who's done a lot of these to work on you. Cosgrove has about wrote the book on it. Melissa M just had hers done 2 weeks ago there. She went in on a Monday and was on her way to Pennsylvania on Friday! She can fill you in more on that. I had my first surgery done at Cleveland in 1995. If it weren't for Dr. Patrick McCarthy up there, I wouldn't have been around for anyone.

Chris you really are worrying too much. We all did, it's perfectly normal. While you stand at the base of the mountain, what do you see on the otherside of it? What's that, can't see the other side you say? You'll have to climb that piece of country and get over it, then you'll see just how beautiful things on the otherside are! It's not a journey, it's an adventure.

 

[bvdr]

Christina,

You are already starting to sound better! I think you are right to find the very best surgeon available and at a center that this surgery is very commonplace. Some smaller facilities do a great job and people are very pleased with the results but for me, I wanted a vetern surgeon at a top rate facility. I decided to put up with the inconvenience of a little distance.

Many people here have had Dr. Cosgrove and have been to the Cleveland Clinic. I believe it is ranked the #1 heart center here in the States.

I don't know if anyone has advised you yet to start requesting copies of all your tests, consults, labs, etc., as you go along and start educating yourself. You are going to end up amazing yourself and will no longer feel like you have lost all control.
For me, and a bunch of others here too, the wait is the hard part. The night before surgery I watched the second hand in the hospital skip from second to second. I was not sure if I was getting one, two, or three new valves or if I was getting a couple of bypasses too. The surgeon was quite sure the mitral valve had deteriorated to the point that it was affecting the function of the aortic and tri-cuspid as well. He said that was the case and only ended up replacing one valve. My blockages don't need anything done at this point. So you see, I woke up finding out I "only" had to have one new valve. It's just a matter of perspective . Others here have had double replacements and some have had other incredibly complicated procedures done.

Chris....I think you are going to do just fine
In the meantime, are you serious about gaining weight? As someone who has battled against gaining weight all my life that sounds so strange.
I tried to eat very healthy foods, avoid empty calories, and started educating myself on how to manage my diet after starting coumadin. Get yourself as fit as possible....after all, you are a mountain climber now!

 

[J.B.]

Chris, you gonna be ok. with a good Dr. friends, this website and having youth on your side, you cant miss. Its not as bad as it seems to you right now. I had a St Jude mitral valve replacement in November 2000. Had I not done so, I would not be 79 tomorrow. You are going to be fine, good luck and keep us posted.

 

[Nancy]

Chris-

Getting a "one of the best surgeons in the country" surgeon is nice but sometimes you have to put up with a lot of inconvenience and battling with the insurance companies.

There are absolutely fabulous surgeons who are experts in this surgery all over this country. The surgery is highly perfected.

We are blessed with one of these terrific surgeons right near where we live, Dr. DePan, so Joe was thrilled and so was I. I could drive to the hospital a couple of times a day, go home and take care of the house a little and be back to see Joe in the evening. We had no travel expenses and no hotel expenses, and when it was time to hand off to the cardiologist it was a seamless transfer. Plus Joe had wonderful care throughout the whole thing. It really couldn't have been better.

Of course, if you are looking at having a kind of surgery that only a few surgeons do, then you probably will have to travel.

So, if there are good surgeons close by, I'm for supporting your local "gun-slinger".

I think as you read through many posts, you will see there are wonderful results from all areas of the country.

 

[Bill Hall]

Christina - Welcome to our site. I hope you find all the information to make you feel more comfortable about going through the surgery. I had two valves done by Dr Cosgrove, a Mitral valve repair and Aortic replaced by homograft (human valve) in 2001. I am doing great and feel just as good as before surgery and take only an aspirin per day. The surgery is not exactly fun, but very tolerable and you are back on your feet quickly. Please keep asking questions. I waited from July until Jan to have my surgery. Cosgrove has a waiting list of about three months, if I remember.

 

[Bart]

Hi Christina

I really don't have any words of wisdom from experience. I found out on August 8th that need a new Aortic Valve. I am scheduled for surgery on 9/8. I will be 47 in October and fully intend to be back on my feet and ready for light duty by then. This forum has REALLY helped me get ready. I did not know what questions to ask or what to expect. I think the information listed in the various Threads can answer any question you have. For myself that is what I need to be prepared. Beleive it or not I am looking forward to having the surgery completed. 6 weeks ago I was a little tired, got winded easily and had what I would call major tightness in my chest when I pushed to hard. Today I know that I need to have done and when it is over I will be so much better.
There are 2 things that I needed Information and Support. Both of those are in abundance here.

I hope this helps

Bart

 

[Christina L]

again, thanks

again, thanks

Thanks again for all the moral support. Bill, I have a question for you - did you have just posterior leaflet damage to your mitral valve or both anterior and posterior?? Do you get to meet with Dr. Cosgrove the day before for a consultation to make your requests known - do you think he goes out of his way to repair the valve?

I have a valve that is considered "of the worst variety" according to a surgeon in California, but he said he thought 95% that he could repair it, only he wouldn't know until he got in there, which is what I know to be true of all surgeries of the valves.

What was the whole team at Cleveland like? Did you feel that you were cared for?

Michelle, if you are out there, I would love to hear from you also. It says you are from Boulder, Colorado under your picture - if you do live in Boulder, I am very close in proximity here in Colorado. I would love to meet you and talk with you in the next few months before my surgery, if at all possible.

Thanks everyone. I am just still so in shock, but you all are helping to bring me around, slow but sure.

Chris

 

[weekycat]

ICAM with Nancy

ICAM with Nancy

I was thinking pretty much the same thoughts that Nancy posted above, but wasn't sure how to put it.

I know that I had to stay in the Fairview Hospital system in order for my insurance to pay for it. I couldn't even go 30 miles away to a very reputable heart hospital, in my hometown, where I would have had lots more visitors. And unless "money is no object", (in which case I guess I would have wanted to find the best of the best too), I would say you would want the surgery covered by insurance. I think mine was right around $65,000! My first house cost less than that .

Also, as I said above, my surgeon said he was 99% sure that he could do a repair, "...because... well, because I USUALLY CAN!"

He seemed a little cocky, but on the other hand, I was glad he had that much self confidence.

I guess no matter which surgeon you choose, you should probably ask him if he "USUALLY CAN"! Good Luck to you, and keep us posted.

 

[lynk]

Hi Christina-

It has been almost 4 years since my mv repair at the Cleveland Clinic (Dr. Crosgrove) and I have been fine ever since. I have no complaints -- the clinic is very organized and efficient, and I fortunately did not have any complications. There was about a 3month wait then.

Find out what surgeons do valve repairs in your area hospitals.
It is important to ask how many repairs a surgeon has done. Your chance of a getting a repair vs. replacement is much better if it is done by someone who specializes in valve repairs.

The news is so scary at first, but this forum is great and by the time you have the surgery it won't seem so bad.

Best wishes lynk

 

[Andrea]

Christina,

I forgot to add one thing to the email: the valve... if you cant by chance have it repaired I would go with the mechanical. Because you are still young, a tissue valve usually only lasts 8-10 years and then you have to go back in. I have the mechanical and its no big deal. I am on Coumadin a blood thinner, but that nothing. I go in for bloodwork once a month and have had no problems. The only downside to the mechanical is that I couldnt have another child and we did want one more but we decided we have two beautifull little girls and thats good enough. Other than that I am glad to have the mechanical because I wouldnt want to have surgery every 8-10 years.

And I'm so used to the slight ticking that I have to be listening for it in a quite place to notice it anymore.

Just had to throw my two cents in

I hope the email helped.

 

[sylviayasgur]

hi christina!
welcome to this site. as you can already see, everyone here is amazing when it comes to support, info, and just plain old hand holding.
this must be such a frightening time for you; we all remember it well (although my husband is the patient).
i can already see from reading your posts that you are feeling more confident and comfortable with this whole thing as time passes and as you learn more.
nancy is totally right, knowledge is power.
try and equip yourself with as much as you can by reading some old posts, reading personal stories, and just by coming back and asking any and every question you have.
we are happy to be of help.

i'm sure as others read your post, you will get more responses regarding surgeons, presurgical prepping, etc.
in the meantime, we are here for you.
be well, sylvia