Overwhelmed

[Buckeye in MI]

I found this forum hoping for some help. I've known about my MVP for years and was always told it was no big deal, I'm fine. Now, I go for a check up and was told that the "thinking has changed" and now even though I am "fine" I may need to get a repair on my valve. I am so overwhelmed with this news. I was told this is the proactive approach to keep my heart healthy. I am getting a TEE in 2 weeks. I'm doing the diagnostics here and plan on going to the Cleveland Clinic for the surgery. I was told I can do this at my convenience and there is no urgency. I have no symptoms of any problems. Can someone help me? I'm extremely anxious over this. I'm a 46 year old mom of 3 girls. Advice?

 

[geebee]

Welcome.
It is always a shock to hear you need surgery especially when you feel okay. Many of us believe it is better to have surgery when you still feel good and are healthy in every other way. If you wait until you have symptoms, you may have already done permanent damage to your heart and it may be harder to recuperate.
Try to be happy that you have doctors who want to do the surgery now rather than later. Some doctors wait way too long to fix valve problems. I think that, if your doctors are sure surgery is going to be needed anyway, it is best to do it when you feel good.
Stick around, read the threads, ask lots of questions and I am sure you will be prepared by the time your surgery comes along.

 

[hensylee]

welcome, Buckeye, to VR. This is a large family who care about each other and all newcomers who want/need information about valve surgery. I can't help you on that because I had another kind of heart surgery, but everybody else here either had it or a loved one did and they will be along very quickly to begin sharing with you. You have definitely come to the right place.

 

[PegB]

Hi Fellow Buckeye,

Sounds like we must have seen the same Dr. !! I also have MVP and had been having 6 mo. echoes for the past 20 years. My echoes were always about the same and none of my cardios (we moved around a lot) seemed like it was a big deal. About 4 years ago, I went to my new Dr. here, and she just goes all nuts on me, and says I should have had surgery LAST year, how could I be walking around with such a bad heart?, etc., etc. She also says guidelines have changed and you have to have it done NOW. I was almost passing out in her office from shock. Once I was able to breathe normally again, I consulted my primary Dr. and she set me up with another cardio. who agreed that they want you to get this taken care of while you're still asymptomatic,but that I didn't have to be in any hurry. He added stress echoes to my six mo. checks. I always dreaded those 6 mo. consults, since now I was ready for the ax to fall. Finally on my last echo in April, we sat down together and watched my results on film, and he said that I should REALLY start thinking about getting the surgery since it was deteriorating more (he also asked me if it was time for me to find another Dr. now?? ). For some crazy reason that day I said "OK, let's do it" (what was I thinking??), so he scheduled my TEE and a cath., and as I came out of that, they were sending my records up to Cleveland Clinic (at my request), and now I'm scheduled for surgery Sept. 25th. They did tell me at CC that I could wait until next year if I wanted, but that my heart was starting to enlarge slightly, so he didn't want me to wait too long.

It's a real shocker when you first get the surgery word. I've sort of eased into it for the past 4 years. I also decided to get it done now while I have the insurance since we'll be changing that next year. Once you calm down, you'll realize you have some options yet. If you plan to go to CC, just get your records sent there and they'll let you know their recommendation. You might also want to get a referral to a local surgeon just to get some opinions.
They said there's a 95-98% chance that I'll get a repair, and almost all of their surgery is minimally invasive.

MAINLY, you have found the best place to get all your questions answered. I never have any questions to ask the Drs. since I've already learned it all here. I swear some of these people could probably do the surgery themselves. I actually had been coming here for several years (usually around my 6 mo. checks), and it was here that I realized that I can do this. The post op reports are priceless, since you really know what to expect. I would suggest just going back through the forums, and take the surgery journeys with all the members here.

Deep breath...you'll be fine!

 

[StretchL]

Don't Be...

Don't Be...

Hi. I'm relatively new to this site, also, but I can tell you that there is a WORLD of information here. Being a newbie, and one who hasn't been cut on yet, I don't want to speak out of turn, but, just a few points to keep in mind:

1) Valve surgery today is surprisingly common. I just found out the other day that they've put in more than 1.5 million St. Jude's Mechanical valves. That's just one model of one brand of one type of replacement valve. It sounds unbelievable, but in this country valve surgery is almost routine.

2) At the Cleveland Clinic, valve surgery IS routine. They do them all the time, day in and day out, and for otherwise healthy patients, they do 'em 99+% of the time without complications.

3) Yes, you're looking at major surgery, but you're also looking at coming out of it much healthier, with a much stronger heart, and with a lot of very smart and talented people (your docs, not the people on here ) keeping an eye on you through regular check ups and tests.

4) There are many many people on here who've gone through it before us, and I've found them more than willing to share their thoughts, opinions, and experiences. You're in good hands.

 

[temp69]

You will be fine, that's the main thing to remember. And yes, the surgery is routine now. It's no picnic, but neither is having an enlarged heart.

good luck!

 

[Buckeye in MI]

Thank you!

Thank you!

Wow,


So glad I found all of you. It has been just a day since I found out that I am surgery bound but thanks to the replies so far (and especially to PegB) I can see I am not alone.
Thanks!

 

[Leah35]

Welcome!

Welcome!

Hi there....and welcome to vr.com.....as you've seen already, this is a wonderful place to get all of the information and support that you need. Until you've gone through something like this, you can't really understand it.....BUT we're all here for you and like someone else said...i think some of the members could actually perform the surgery themselves!

It is a scary journey...and yes, a major surgery, but it is routine and there are fine surgeons out there that do this stuff day in and day out! I had my surgery on July 21st (aortic valve replacement and ascending aorta replacement)....and I'm feeling pretty great....not jumping fences yet, but give me time. I am a 36 year old mother of two boys and this was my third open heart surgery. I can tell you that the week before surgery was really tough and I relied heavily on the vr.com members to get me throught it.....but here I am 6 weeks later....happy and very healthy!

I agree that it is better to have surgery while you're still relatively asymptomatic....I think it's much easier to recovery that way!

Good luck to you on this journey and come back any time to get your questions answered and your fears eased!

Hugs

 

[Marguerite53]

Hello! I'm 52 with 3 children also (2 boys, 1 girl.. 24, 21, 19). Take a deep breath. Chances are your childbirth stories will remain more exciting to tell than you upcoming heart surgery! True!

I'd known about my BAV (bicuspid aortic valve) for a long time, but was always told it wouldn't be any trouble for me until I was in my 70's. I know exactly the feeling that drops into the pit of your stomach when they suddenly tell you otherwise. You go out to your parked car and just sit. Stare. Sit. Then you get proactive and start researching and asking questions. After awhile (and especially now that you've found us ) you realize that while you need to prepare for this with all seriousness, the chances are overwhelmingly in your favor for a full and beautiful recovery.

So after you've searched through old threads and come up with questions, start some new threads of your own with specific questions and we'll do our best to help you find answers. Please remember. We are a support group. We have no medical professionals here who give medical advice.....this is all opinion and experience talking (except our warfarin specialist, Al). But you're headed to the best clinic in the nation, aren't you? That is wonderful that you are going through Cleveland Clinic.

Look forward to hearing more from you. Take care. It's going to be fine. We can help you plan for just about anything!!

Marguerite

 

[RandyL]

From what I have read I think if I was going to the Cleveland Clinic for my procedure I would just sit back and let the Docs do all the work and worry. It doesn't get any better than them.

 

[PegB]

Buckeye,

Hope you're feeling a little calmer today since the shock has had time to wear off. Please feel free to PM me if you have any more questions

Randy,
LOVE the John Wayne post!!!!

 

[susieq14]

Hello!

Sending you lots of best wishes and positive thoughts and

a great big hug (((((((((((((((((((() )))))))))))))))))))))))))

since I'm a novice still in the waiting room and can't offer any first-hand advice.

Take Care as you prepare for your surgery.

Susie

 

[Georgia]

Buckeye, welcome! I also had mvp; but didn't have the luxury of a good pcp to keep an eye on it. By the time I found out that ol' "benign" mvp had transmogrified into a monster, I had chf, an enlarged heart, and a dmamged tricuspid valve as well as an irreparable mitral valve. So in spite of the shock, you're on the right track.

Hope you take the time to read lots of threads on here - some will scare you and make you uneasy, but better the devil you know . . .

 

[aussiemember]

Hi Buckeye

Well, I can actually say I understand pretty much what you are feeling right now. I've known I had MVP since I was 13 but was always told it was a benign condition and nothing to worry about. I also don't have any symptoms and walk daily for about an hour. Then in February this year when I was 38 (I have one child who is 14), I went for my yearly checkup and the cardiologist said that the thinking had changed and I would need to have OHS in the next couple of years. Thankfully soon after I found this site and the wonderful people on here and the many positive stories have helped me come to some sort of acceptance of all this. Let us know how your TEE goes in a couple of weeks. What is your level of regurgitation?? Make sure you ask all the questions you can think of!!!! Jeanne

 

[Buckeye in MI]

Feeling MUCH Better

Feeling MUCH Better

Well, I've definately come to the right place for some great support and info. Sounds like many of us had the same diagnosisi of "benign" MVP and then hear about the thinking has changed. I am just thankful my Dr. jumped on it when he did.

My MVP 4 years ago was graded 2-3 but I don't know the level now of regurgitation. It has minimally increased in leakage since 2000. So, I guess
that shows the path I'm taking. I've been pretty much asymptomatic until yesterday, today I think anxiety is playing games with me and making me feel every pound in my heart and making me short of breath. And this is just when I am really dwelling on it. Any advice?

Thanks!

Jane
Buckeye in MI
patiently (?) waiting for TEE

 

[Karlynn]

Many people think they're "symptom free" until they have the valve replaced and then they realize that their body just tricked them into thinking they didn't have symptoms because they sneak up on you so gradually and the body adjusts.

Stress will definitely get you going - so I'm not surprised your heart is telling you it doesn't like this new information.

My MVP with regurgitation was diagnosed when I was 22. My valve tanked when I was pregnant with my daughter - now 20. And I had my replacement done at the age of 32, almost 15 years ago. Life is good.

And - we travel by K-zoo frequently, as our daughter is in her last semester at State in East Lansing.

 

[twinmaker]

Jane, Welcome aboard! We're glad you found us. I didn't have MVP but mitral stenosis from Rheumatic Fever. I've had a repair and a replacement. I know it's a shock when you find out you need surgery. Some of us have been like you and been followed for years thinking things were always going to be OK and then some of us didn't even know we had a heart problem until one day the doc tells you you need surgery. No matter...it's still a shock. But you're doing exactly the right thing by gathering information. This is a great site with very knowledgable people. Just wanted to let you know that we're here for you. Welcome to the family! LINDA

 

[WayneGM]

Hi Buckeye,

I like you had no symptoms and finding out I needed a mitral valve repair came right out of the blue. Never even a hint of a problem at previous check-ups. I was advised that it should be fixed asap or there could be permanent damage which would make matters worse down the road. Needless to say I was devasted. However, the GP, Cardiologist, and Cardiac Surgeon all recommended I get it done asap as I had age and overall health on my side.

Now I'm 6 months post-op, and while it's certainly been no picnic, the OHS wasn't nearly as bad as I thought it would be. The worst has been the frustration as it does take considerable time to heal and get back to "normal", but procedure itself was surprisingly smooth. The health care professionals I encountered were great, and they obviously knew their stuff. I really got the sense that OHS was fairly routine at Toronto General where I went. Obviously, OHS is major surgery and not to be taken lightly, but if I had to do it again in the future I'm definitely much more confident and comfortable about it now.

 

[pipersmith]

You came to the right place!

You came to the right place!

I share(d) many of your feelings a few weeks ago when I found out I had a leaky aortic valve. I am 33 - mom of 4 and no significant health history. I was dumbfounded. I am sure you can relate with the things going through my mind. Thank goodness - I stumbled upon VR.com!!! My mind is soooo much more at ease now.
Read and research all you can - I think knowledge has been a major factor in easing my fears. This resource is the best. Doctors are very helpful and knowledgable, but how many have actually had the surgery?!
I agree with an earlier post - your body gets used to things over time - you probably have more symptoms than you realize. My symptoms changed drastically in a relatively short period of time - so I have learned how quickly things can change. I agree with others, best to have the surgery a little early than too late.
I hope for the best for you - stay in touch here!! I am new - but glad to help however I can!!

 

[Marguerite53]

I've been pretty much asymptomatic until yesterday, today I think anxiety is playing games with me and making me feel every pound in my heart and making me short of breath. And this is just when I am really dwelling on it. Any advice?

It's quite possible that you are experiencing an anxiety attack of some kind. It is VERY difficult to tell the difference. I am post op now, and had many sensations like you describe. They are gone now. So to say that it is all psychological may not be fair. It's hard to say. Do keep an eye on them. If these feelings continue do let your doctor know about them even if all they do is mark it down in your chart and issue you an Rx for some calming meds. Always check in with your doctor with quesitons. Good time to build a good relationship with some nurses. THey can be incredibly helpful.

If you are experiencing arythmias due to your worsening condition, they can prescribe meds for that. Arythmias can be elusive so be patient. Most are benign. But again, best to check in about them if you feel like they are continuing.

Good luck! Hang in there. We're here 24/7!!

Marguerite