New user

[Nelle]

Hello Everyone

I recently registered on this site after days of reading so many posts that I feel as if I am already part of the group. This is a wonderful site and has given me a level of comfort I wouldn't have otherwise. It's encouraging to read so many of you doing well after surgery and celebrating valversaries.

My mitral valve will be repaired/replaced in the coming months-January if all goes as planned. I had rheumatic fever in 1989 as a young adult, developed stenosis in 2002 with symptoms and a valvuloplasty in 2002, which then left me with some regurg but I felt much much better. I've been watching it every six months since then and have gone surgeon shopping on and off from mid 2003 until now. When I first met with surgeons and/or their card's, they would tell me that it was not time yet and to keep watching. My card maintained that doing it sooner was better because heart is still in good shape and it's best to keep it that way. Last echo was in April EF 55-60%. LAtrium starting to dilate. Now when I go to surgeons, they say yes, do it. So I am.

Lately I've been feeling anxious and don't know how much of it is due to valve function problem and how much is due to plain anxiety. It's especially strong after I eat a meal. Does this sound familiar to anyone?

My thanks to you all and I'm very happy I found this site.

Nelle

 

[Bina]

Hi Nelle, and welcome to the group!
I did have alot of anxiety and heart palps too. They are very noticeable after eating a dinner, and I was told that your body works quite hard to digest foods, especially when the heart is compromised. I eat low salt and low fat meals in smaller portions which has helped alot.
I agree on getting the OHS before the heart is too damaged.

 

[KAJ]

Hi Nelle and welcome to the site!

It is very normal to be anxious. After all, this is some pretty major stuff we have to deal with and come to terms on. Please feel to ask any question at time. We are here to help each other. No one can posisibly understand what we go through before and after surgery. Most of us have gone through it or know loved ones or close friends who have done so.

Again, welcome to the the site!

Karl

 

[Rush20]

Welcome Nelle. Good luck and being anxious is very common.

 

[Mary]

Welcome, Nelle!
I'm glad you joined us, but do wish it were under different circumstances!
Please let us know when you receive a surgery date, and we'll put it on our calendar.

 

[Cooker]

Hi Nelle!!
Welcome to the zoo! You are in the right place for information, support and an occasional laugh Don't know about the meal and anxiety.....I know if I "over" eat I don't feel my best but I have not noticed anything like that with a normal meal.
Again....welcome.

 

[Freddie]

Welcome Nelle, to the most informitive bunch of people you'll ever come across.
Ask anything thats on your mind, don't be shy.

We have a chat on Sundays, so feel free to come and join in

 

[shellyb]

Welcome Nelle! This is a great site filled with great people! My husband just had his aortic valve replaced on Oct. 3rd at the Cleveland Clinic. He's out for a walk around the block right now with our granddaughter. He's doing great! We know all about the anxiety of it. It seems as though the more info you get the less anxious a person feels. Also this group is great for being reassuring when questions and concerns arise.

Again, welcome!

shellyb

 

[WayneGM]

Welcome to this great community. Glad you found us. Anxiety is normal, but we're here to help you get through this....and you can! While no picnic, OHS was not nearly as bad as I feared. With a little time and effort you'll as good as new. Best wishes.

 

[Superbob]

Nelle,

Welcome to our Funny Farm! If you didn't have the jitters, you wouldn't be human. All of us who have gone through the wait (which sometimes seems to go on and on and on) have dealt with that. Honestly, in most cases, the waiting is the worst part. Checking in here and talking it out is a great help.

Cheers,

 

[halleyg]

Hi Nelle,
I agree, having gone through two OHS this year, that the waiting is the worst part. The anxiety can be overwhelming. I never in my life imagined that I'd be dealing with two OHS while in my 30's. It wasn't easy but I got through them and feel so much better already. As someone else said, if you didn't have anxiety you wouldn't be human. It's OK to feel scared
Welcome to the site, the support you receive here will help you immensely!

 

[marky]

Welcome Nelle
you certainly found the right site for anwering questions..and finding support!

 

[Nelle]

Hello All

So great to hear from all of you-Thank you! I'm sure I'll be asking questions in the next few weeks. Right now I'm trying to keep anxiety to a minimum. After reading your posts I feel more confident about the surgery and making it through to the other side. I'm thinking to go tissue then reoperate in 10 or so years with a mechanical. Maybe by that time the On-x or another comparable mechanical will have proven studies for mitral use for more than 11 years and using less anticoagulant will be an option.

For this month I have more tests and more doctor visits. I keep imagining myself running and swimming with lots of breath, ooh can't wait!!

Nelle

 

[Karlynn]

Nelle, are you saying that a mechanical mitral valve doesn't have studies showing it lasts past 11 years, or that there aren't studies yet to show it with the On-X and less anticoagulation past 11 years. There are many years of study that show that mechanical mitral valves last a long time.

I will have my St. Jude mitral valve for 16 years on the 24th of this month. I'm counting on having it a lot longer. We have other members who've had their mechanical mitral valves longer than me.

I just wanted to make sure you were clear on the longevity issue.

As far as reduced anticoagulation, a mitral valve is considered high risk for clots without anticoagulation. With ACT (anticoagulation therapy) it is the same as a tissue mitral valve. I'm not holding my breath too much that those of us that receive mechanical mitral valves will have the same hopes of low ACT or no ACT as soon as those receiving mechanical aortic valves.

Which ever valve you choose - you will definitely realize a new physical stamina. It truly is a new lease on life.

 

[Nelle]

Hi Karlynn

I meant the On-x valve studies (or whatever other valve they'll be talking about in 10 or so years). I wasn't able to find a study more than 11 years for lower than 3.0 ACT for mitral valve. Since mitral valves require higher INR levels, I thought it would be nice if posisble, that when I have reop, there is a mechanical valve that requires lower INRs with >11 years study to support it.

I am very tempted to go with a mechanical now to spare the future operation. The surgeon I'll use suggests ATS. There is a history of stroke in my family leading to death at 53, and mechanical makes me a little more nervous about that than tissue.

Still, it's a tough decision. It seems every other week I am changing my mind-"Get a mechanical", "no , get tissue." "No, get mechanical...no, tissue.."

How did all of you make up your minds?

Thank you for your post on this. It certainly makes me feel better to see how well you're doing and I'm very happy for you that you are having a good experience with mechanical, as I'm sure many others are as well. Now I'll probably go back to "no,..get mechanical" lol

I guess either way I go, it will be good.

Nelle

 

[ALCapshaw2]

The On-X Valves were introduced to the World Market in 1996. That is why there are NO studies that go back more than 11 years for that valve.

The Original St. Jude Bi-Leaflet Valve dates back 30 years. I was recently informed that my (Aortic) St. Jude Masters Valve is a later model introduced in the 80's.

The Carbomedics and ATS Valves are spinnoffs of the St. Jude Valve patented (in the late 80's) by Jack Bokros who has designed most of the Pyrolytic Carbon Valves (St. Jude, Carbomedics, ATS, and his latest, the On-X Valves).

Ask your surgeon (or the Valve Manufacturers) about the Thromboembolism Rate for the ATS, Carbomedics, Medtronics-Hall, On-X, and St. Jude Valves in the Mitral Position.

For my pending Mitral Valve Replacement I hope to receive an On-X valve (when my Cardio and Surgeon decide that the Benefits outweigh the risks of a 3rd OHS on a radiation damaged heart).

'AL Capshaw'