Hi! I'm New Here- 38 yrs old need MV repair/replace

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LindaVA

Hi Everyone. Thank god I found you. A little bit about myself. This is a little long but since I can tell that you guys will be my support thoroughout this.

I am a 38 yr old female and have known about my mv prolapse my whole life, but just found out that now I need my mitral valve repaired/replaced. This is really difficult for me to wrap myself around because of my age, and because I am asymptomatic and very active (I run marathons, lift, swim, etc.) I went for echos every year and knew this was in my future but after a TEE last week, its in my immediate future. The dr said my degree of regurg is greater than two years ago and she did not like how my leaflets? were thickening.

Which brings me here. So many questions. My main concern is where to go. Anyone in the NJ/PA area? I am going to UPenn in two weeks for a consult. The doctor, Dr Bridges, was trained at Harvard/Brigham Women's so that seems to be positive. With UPenn available to me it is unlikely that my insurance will cover Cleveland Clinic or Brigham-- anyone have an HMO that they were successful at convincing the need to go out of network?

I have a few questions. First they want to evaluate me for the EVALVE clip-- anyone have any experience with this. My inclination is NO- I want to go in and get this fixed for good and not be a guinea pig and have to worry about getting the clip replaced every 10 years or so.

Second, has anyone with a little bit of thickening had a repair? I know that is not a good sign that my valve has thickened but I'm hoping it won't prevent a repair. Being asymptomatic and all, I would be heartbroken to wake up and find that I rushed an operation just to have a replacement after all.

For me its clearly a timing thing. Haven't ruled out another pregnancy as well (my husband and I have a 7 yrs old girl). I also have other concerns related to work (how long out?-I'm a lawyer so thats mainly desk) and resuming physical activity (I'm a reserve officer in the USAF so I have fitness and other physical requirements and am scared of being medically disqualified b/c of this.).

Anyway, I have a great family, but they are very matter of fact-- the "just take care of it" kind,no dwellers. But you know, sometimes when you are going through this you want to talk about it more, so I really do appreciate your support.
Linda
PS: I'm a pretty tough cookie but I can't get over this business of them stopping your heart and freezing you. And I keep focusing on this mortality rate, which my husband says is "pretty good", but I'm sorry, when you have a child and your only 38, I don't want to hear about ANY mortality rate, even if it is less than 5%. Oh, please tell me they know what they are doing!
 
Welcome Linda - we're glad you found us. This is the best place in the world.

I had my mitral valve replaced when I was 32. My children were 5 and 7, so I can understand many of your concerns. But also know that was 15 years ago for me, and life has been good. In fact, I'm in KC visiting my first grandchild right now - so life moves on and moves on very well.

The word "mortality" is scary. But know that these surgeries are highly perfected and done often and the mortality rate is as low as you can probably get. I'm guessing that going in for a nose job would carry almost as much in the rate simply because of the general anesthesia.

As far as what you can have done to your "thickened" valve - I don't know about the repair issue. I'll let others weigh in on that.

If your valve is replaced, you basically have 2 options and from your post, I'm guessing you aren't going to be totally thrilled with either. If you go with a tissue valve -at the age of 38 you are guaranteed 1, and most likely 2 more replacements in your lifetime. So it won't keep you from having to do it again. The up side is that it is what is recommended if you want more children. You most likely won't need to take anticoagulants (some do in rare instances) and your reserve status probably won't be threatened. However, with a tissue valve you will have to not only need it replaced, but must also deal with the degeneration of it prior to it being replaced. It's not like changing the oil on your car when you know every 3000 miles, regardless of how the car is running, you need it changed.

If you go mechanical - with the valves out now, it will most likely last you the rest of your life. No more surgery is not a guarantee. Things such as scar tissue encroaching on the valve can cause a need, but on the whole your chances are low. Pregnancy is not advised with a mechanical valve because of the anticoagulant Coumadin that you must take in order to avoid forming clots on the valve. Coumadin is associated with many problems as far as birth defects etc. And it has been done, but you'll find posts here from members going through it, or having gone through it and it is very difficult. The reserves may have issue with you having to take anticoagulants and this could affect your status.

On the up side of mechanicals, I've had mine for 15 years and it has allowed me to see my children raised, travel to Europe and do just about anything I want and not have my life interrupted by more surgery. For most people, and for me, taking Coumadin isn't a huge life changing issue. It' much easier than being a diabetic and having to manage that. For a little more info on Coumadin, give this thread a read. http://valvereplacement.com/forums/showthread.php?t=17116

My 5 week old granddaughter is awake now and I need to go spoil her, so I'll let others address the work issue.

Best wishes. I look forward to getting to know you more.
 
Welcome

Welcome

Linda -

So glad to see that you've found us. I can guarantee that you'll be able to talk through your choices, voice your concerns and get a tremendous amount of support from this wonderful family.

Six months ago (almost to the day) I was sitting where you are, trying to wrap my head around surgery that was imminent. While you've known that someday you'd require surgery, my diagnosis was a surprise (I'm 43, no symptoms, very good shape from running/golfing/hiking). The only thing that got me through those tough days -- waiting anxiously, deciding on a course of action with my valve -- was the healthy, continuous dialogue I had on this site. Even us "tough cookies" need to talk through our decisions and concerns; the information you'll find here is so empowering.

A few things regarding the questions you've raised:

Regarding Penn, I can tell you it's one of the busiest (lots of hearts) and best institutions on the East coast (my excellent surgeon at Northwestern was recruited from Penn in 2005).

As far as a return to activity, I felt pretty much back to normal after a couple of months (walking every day is key). Since you're in good physical condition now, you'll probably have an advantage in healing and recuperation (many of us have found that to be true). Cardiac rehab was fantastic; I think you'll find it a great way to monitor your progress as you get back to pre-surgery levels of activity. I'm back to 100%, I only take an aspirin a day and I'm feeling terrific.

Don't fear the mortality rates. Those stats are part of the reality, but you're young, healthy and strong. Stay in a positive mindset and practice the VR mantra as you recover (walk, breathe, eat, sleep). Considering your age and condition, it's a nearly foolproof formula for a successful recovery.

Warm regards, and again, welcome to the family.

Kristine
 
Welcome, Kristine. I'm glad you found us. U Penn is rated 13th in the list of best hospitals for cardiac surgery by U.S News and World report, so I think you should have no fear about that. As the others have said, you are young and stong and will come out of this just fine. Browse the threads on valve choice and then you will have to weigh the options and make up your own mind. We like to say around here that no choice is a wrong choice! Look forward to helping you with any and all questions.
Best Wishes,
Phyllis
 
Welcome Linda - I am 44 and am in the "waiting room". I have known I would need surgery eventually for about 4 years and I am looking at a Feb. date for mine. Mine is the Aortic Valve, I also have MVP with regurg. Your valve decision is all up to you. You have to way the pros and cons and decide what is best for you. Good luck and ask questions of these lovely people, they are wonderful!!
 
I not only had thickening of the leaflets, but my valve had a lot of calcium deposits. However, I had a SUPER surgeon who was able to repair my mitral valve by removing the calcium deposits (as much as he could, I guess), replacing the ruptured cordae with gortex cordae and shortening the chordae by pulling the valve shut. They then put on a new Edwards ring. Usually, when it is possible, they remove a section of the valve, bring it together and then put on the ring. I had too much calcification for that.

This is just to tell you that if you get a very good surgeon, your chances are probably good for a repair (the mitral valve is easier to repair than the aortic valve), although naturally, I am not a doctor, nor do I know all the details. What is the measurement of your LV and your LA? What is your EF?

A cousin of mine who is a doctor in New York mentioned that EVALVE clip to me, and said that Doctor Mehmet Oz was doing it. I was not interested since it was experimental. Also, I kept thinking that if ever this tiny clip didn't hold, and all of a sudden the valve went from closing correctly to all of a sudden having severe regurgitation again, the heart would not be able to compensate since it would be so sudden. When the valve worsens gradually, the heart can usually compensate for many years, as was my case.

In any case, I would start trying to find the best surgeon you can in a hospital where your insurance covers you, get his or her opinion, and then plan from there.
 
Hi Linda,

Just thought I'd say welcome. My diagnosis for a MV repair came right out of the blue at my annual GP check-up. No sympotoms that I was aware of, and not even a hint something was going wrong at my check-up a year before. I was age 50 and physical fitness to me was a spectator sport :D

The OHS wasn't nearly as bad as I thought it would be, and I was very impressed by all the medical professionals I encountered. They really made me feel this was a "routine" procedure.

I can't help you with your questions as, to be honest, when my GP, Cardiologist, and Cardiac Surgeon all recommended the valve repair I took them at their word and didn't ask for the medical details so compared to others around here, I'm not very informed on the medical matters. However, there's plenty of folks around here with lots of information and knowledge to share. Given your age and fitness, the odds for a successful recovery are definitely stacked in your favour.

Best wishes.
 
Welcome! There are so many people here who have been in your shoes.....I know that you will find substantial and meaningful support here. Just keep starting new threads with each new question or concern and you'll continue to get helpful (controversial, maybe!!), experienced answers. Of course....be sure to heed the advice of your medical professionals over us. We're just like you...trying to weave our way through this myriad of information to make the best decisions for ourselves. We are each so different.

Mine was an aortic valve replacement. I'm 52. 3 grown children (19,22,24). My AVR came about 30 years earlier than what they'd promised...:mad: ...but life is like that!! You have a wonderful attitude. Hang onto it. You will find some discouraging moments as you inform yourself and work to make your decisions. It's okay to get frustrated since there really are so many variables to all this. Take some time away......listen to your instincts.....don't worry....you will come to a set of decisions that are right for you! :D

Nice to have you with us!

Marguerite
 
I'll chime in on just a couple things. I had a tough time getting over the heart stopping and cooling thing as well. In fact, I had a tough time with many of the procedures as soon as I heard about them. However, with time, I was able to learn more and put myself at greater ease.

You should feel lucky if you are asymptomatic. Like yourself, I was a very active and had run many marathons, the most recent of which ended up being almost one year to the day of my OHS. From some of the things I have read, it seems that athletes tend to stay asymptomatic the longest as their hearts seem to do the best job of compensating for the leakage issues. Unfortunately, this can also mean that your heart can get enlarged significantly before you will ever know anything is wrong (this is what happened to me). It is MUCH better to get these things taken care of prior to your heart enlarging and getting damaged. On another note, when the symptoms come, they can come fast. I went from being diagnosed with a benign mitral valve prolapse and feeling completely fine to severe regurgitation and unable to run a mile in only about three months.

I know it's not that comforting, but mortality rates for someone your age and in as good of shape as you are extremely small. It is MUCH smaller than 5%, and is usually quoted in the 1-2% range. It is also very important to note that this number includes people of all ages and who may have other complicating factors such as diabetes. During my surgical consult, my surgeon said that he had done over 600 Mitral Repairs and had never lost a single person during the surgery. That put me a little more at ease.
 
Hi Linda,
Welcome aboard. This place is right where you want to be to have all kinds of questions answered. I can't add much to any of the above posts because they have said most of it. Being in excellent shape is a definite plus and your recovery will most likely be faster and smoother. Like you, I was asymtomatic but knew two years ago I'd need an aortic valve replacement, probably in 4 or 5 years. Well my heart didn't wait that long and I had surgery five weeks ago tomorrow. I'm 68, have run 50 marathons and did many triathlons so being in basically good shape for an old man certainly had it's advantages. I'm now walking six miles a day and will be able to start mixing some running in next week. I'm retired but work part-time and altho I haven't decided to go back to work at all, I felt like I could have two weeks ago and most likely you'll be the same.
With someone like you and all the things you do you are probably an A type personality and that will go a long way in getting you back to where you want to be.
Good luck and keep us all posted
 
Well, we just assume they know what they're doing, they've certainly had enough practice at it.

I'm an old hand at this, although I never found this forum until very recently. I had my aortic valve replaced 15 years ago when such forums didn't exist.

To celebrate the anniversary of my surgery, yes you heard that right, celebrate, I wrote an article about it for my local road runner's club. You can read that one, plus a few more that I wrote over the years at my home page. Some of the early ones may even expose a bit of the insecurity you feel now.

http://home.nycap.rr.com/sumorunner/heart-stories/15years.html

Maybe then you should just sit back, take a deep breath and relax a bit. This isn't the end of anything.
 
Welcome, Linda. I'm sure you're shocked and frightened. This website has a wealth of information - it'll take days to read it all. You'll find stuff that'll be really scary at first, but just keep wading on through it. Knowledge is strength.

Re: mortality - without surgery your odds of dying are 100%. You're very fortunate that you have a good doc who promotes early intervention - if you go through posts on here you'll find several people who've had a miserable time trying to convince their docs that something's wrong with them. What we recognize as symptoms aren't given much credence by many gp's and cardiologists.

Also, mortality stats include few young, healthy individuals like yourself - the preponderance of valve surgeries are due to aortic stenosis, which occurs in older folks.

We're glad you found us. Question away.
 
Hi Linda,

Just wanted to say welcome and that I can identify with what you are going through. I'm also 38, also have MVP and was told in Feb. I would need surgery in the next couple of years. I don't have any thickening as yet which is probably why they are happy to wait a bit longer. This place is just great for reassurance and if you hang around you'll see many people going through OHS and often coming back and saying that it wasn't as bad as they thought. Ask any questions you have and hang around - :)
 
Hi Linda,
Hugs coming your way from someone that is walking down this road with you. I know so well how you feel. Sit back and get ready to read everything you can. This site is full of so much good information. I have been here about a month and in that time I have learned so much. But the best part of all is knowing that you are not alone.

Steph
 
Yeah, Steph has that right. 15 years ago I found only one other local guy who had valve surgery and still rode a bike regularly. I searched on line for a long time and found no one. All that anguish you have now was bottled up in me for years. And no other valve recipients I ever talked to had any intentions of returning to exercising. It was the last thing on their minds.

Then one time a few years after my OHS I got a note from another runner on an online forum saying he knew someone who knew someone who knew a woman who still ran after valve replacement. God, was I happy to correspond with her. Hand written notes it was, because she wasn't on line. Here I was wondering whether I would be OK doing 5 or 10 or 15k and she was running the Pike's-freaking-Peak Marathon. I get out of breath thinking about it.

You have scores of folks here who can set your mind at ease. I wish I had had that. Here's a snippet from the end of an article I wrote back in the day. It's horribly mournful and full of angst and it rather embarrasses me now, but it's how I felt then and I had no one to turn to.

" I'll walk if I can't run. I'll keep on moving though, and when even that becomes a struggle, I'll offer myself up to the surgeons and their cold steel blades in the hope that they will be able to put me back on my feet once again. I won't let a thing like this keep me down. "

Turn to us.
 
I recently met two Navy Officers who had mitral valves replaced and are still on active duty. One is a dentist and I am not sure what the other does. I am also not sure whether they had mechanical or tissue valves but I think at least the dentist has a mechanical valve.
 
Surgeons

Surgeons

Hi Linda,
You can search surgeons at ctsnet.org; go under members and click on surgeons to do the search. Welcome to the site! SaraC
 
Hey Linda,

First of all I am from Jersey. I live in Hamilton Township. I actually will be going into the hospital on Nov. 14th for my valve repair/replacement. I'm hoping they can repair this thing. I will be getting it done at the Univ. of Maryland. I hear they have excellent doctors here. I was pretty scared about this whole thing, but let me tell you we are lucky because years ago they're was no fixing these things. You will be fine. Take care of this as soon as you can. They told me once the regurg is severe it's time. DO NOT WAIT!! I hope everything works out for you.

Al

p.s. I'm 42 and have 4 little boys. I want to be around as long as possible for them.
 
Hi, Linda!

Hi, Linda!

Welcome to the group, but I'm sorry you have to be here! These guys are fabulous and have supported me through more than one crisis.

First, let me state that I know nothing about the EVALVE clip. Second, just my two cents, but you have some soul-searching and research to do. The soul-searching has to do with whether you really want to bear a second child. There was a recent thread on here about a young woman who just had her second child with a mechanical valve. It was extremely risky and she is now looking at another OHS. http://www.valvereplacement.com/forums/showthread.php?t=18513 IF you do a search, you should be able to find the original post. The research concerns your military career. I would think that ACT would make you a non-deployable asset, thus basically ending your career. Having said that, however, you might be able to obtain a waiver, depending on your military occupation. Since the military is desperately hurting for qualified medical personnel, they are willing to overlook/waiver a lot. (We had a field surgeon in our medical company who couldn't have passed a PT test if his life depended on it...........thankfully, he retired before it did!:D ) If you are working as a lawyer with the JAG corp (sorry, only know Army - is it the same in the Air Force?:confused: ), and the military is hurting for lawyers, it might be the same thing. (Ya never know. I teach English and social studies, but was an Ordnance officer - maintenance end, not blowing up things -yeah, only in the Army would they lump destroying things and "fixing" them in the same branch :D - in the TXARNG. I would think you would definitely be somewhere in the legal field, though.) Run that one up through channels and see.............oh, and I would ask for a reg or get something in writing from someone in authority stating that ACT is okay should you go the mechanical route. Double-check the tissue valve or this clip thing, too, but I would think that that would be okay since you most likely would not be on ACT.

Ironically,it was not my health that ended my military career. It was my daughter Katie's. My husband was full-time AGR. I was M-day. We were both in the same brigade and about to be mobilized. Katie's heart issues are very complex - not something we could leave for my mother (required legal guardian for dual military couples) to tend to, nor would we want to. She had had two heart surgeries and we were simply biding time until our third when rumors of mobilization first surfaced. Fortunately, we had a very compassionate brigade commander who allowed me to retire (thank God, I had my twenty years in - 20 years and four months to be exact) before they implemented a stop-loss. So Don deployed for a year and I stayed put. :( ( I still miss it..............and the people I worked with - military folks are the best - besides the ones on here. ) Just a few months after Don got home, we found out that Katie's common AV valve had developed severe regurgitation - up from moderate - and our third surgery would be a valve repair instead of the anticipated fontan procedure. We found out one month post-op that her repair had gone south on us and was not holding up. Please don't use our repair experience as a basis for comparison, though, as Katie's anatomy is so unique. (Several people on here have had successful repairs.) That's when I found this wonderful group.

Anyway, you have some homework to do. I wish you all the luck in the world in making your decision and please keep us posted. Hugs. J. P.S. My five year old is on coumadin and it is NOT the end of the world - not something I would wish for any child - or adult really - but not nearly as bad as I had feared. Oh, and try not to mind statistics too much. If I had dwelled on statistics for Katie's survival at birth, I'd have been a section 8! You will be fine. You just need to make your decision as to how you want to "fix" this thing.
 
Welcome Linda..
I could have written your intro.. and I probably did write something close to that 7mo ago when I was hit with the bombshell:eek: (minus the marathons)

UPenn is a great place and one I considered along with Hershey and Univ. of MD.. I ended up at MD with Dr. Gammie and had a repair.
I had bileaflet prolapse with lots of thickening and an 85% regurg. Gammie was able to literally rebuild my leaflets with gortex and a few other tricks up his sleeve (his words)and use a ring to hold it all in..

When I went to meet the surgeon(s) (yes I interviewed several) They told me what they felt was best as far as valve type.. I din't know much and felt confident that they knew what would be best for me.
I wanted a repair to be tried first..that is why I went with Gammie.. b/c he only does MV surgery and has a very high rate of repair..
But they were all willing to attempt repair.. he was just more willing to make it happen.

Arm yourself with a list of questions and don't leave until they are answered.. You found a good resource here at VR.com and will get lots of insight.
Welcome:)
and you will be running those marathons again before you know it.
 
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