Hello!

[joy]

Hi all! I was just surfing the web, and happened to find this site. I am 23 years old, and I will be having my mitral valve replaced in two and a half weeks. I am SO scared to have this surgery done, yet, I know I have to, and I am remaining strong.

I ended up going to the emergency room at the bremerton naval hospital on the 31st of december, 2000 twice. The first time they sent me home saying I had a cold, and yelled at me for coming in. When I went in before, I was immediately admitted, and they thought i had pneumonia. My condition quickly deteriorated, and I had to be intubated and transferred. I was 19 weeks pregnant with my second child.

When I woke up, I had already had a valveoplasty. I didn't even know that I'd had rhuematic fever when I was a young kid.
Fortunately, I am close to a hospital with good surgeons, and the best OB doctor in the world. Erik was born healthy on May 20th. It's so weird how rhuematic fever can affect a person's life so much! Anyways, I am glad I found this website.

 

[hensylee]

Welcome, Jan. This is about the greatest site you will find on the net - such great information and support. God bless

 

[Bill Hall]

Hi Joy - Glad you were able to find our web site. I had my mitral valve repaired along with my aortic replaced in Jan of this year. I also had Rheumatic fever in 1963. If you watch this site closely, you will find numerous people who have been through this surgery successfully. Their surgeries as well as mine were not as bad as imagined. Good luck with your surgery. Let us know about the details and dates for your surgery, maybe you can get additional information

 

[Lorraine]

Hi Joy,

Welcome Aboard! Glad to see you found us. This will be a great place to answer any of your questions. I found the site after my surgery(MVR & AVR St. Jude Valves put in on March 8, 2001! Five months later and it's great to be alive. I was told I had Rhematic Fever when I was young also. Didn't know anything about it until I ended up in the emergency room last fall just before my 50th birthday. Keep us posted as to when you have surgery. This is the best support group ever!

 

[Nancy]

Hello Joy

Hello Joy

So glad you found this site. We'll all help to walk you through those days until surgery.

My husband Joe is the patient here. He doesn't enjoy the computer, so I do his surfing for him.

He had rheumatic fever as a teenager, before the advent of penicillin. Was in the hospital for a year on sulpha drugs. He's 70 now and wasn't supposed to live past 50 years old, but he's still alive and ticking.

He had an aortic valve replacement in 1977, a mitral valve replacement 2 years ago, a repair on the mitral July 18 of this year. He also has a pacemaker and has had two thoracotomies. Two of his surgeries were through the sternum and one was a port access through the side (the repair). Both valves are mechanical and he's been on Coumadin for 24 years. Believe me, Coumadin is no "biggie" for him. It does vary somewhat but the docs. keep everything under control.

If you think of your surgery as a life saver, it puts everything in perspective. The surgeons who do this everyday can probably do it with their eyes closed (well, not really, at least, I hope not).

You'll be fine and will feel so much better afterward. I'm sure your surgeon will guide you through the selection process for determining which type of valve to choose. You are young and that will have some bearing on the choice.

I wish you all the best and ask as many questions as you want. We're all very opinionated here! You'll get lots of answers.

Speaking of which--Did you say you were yelled at in the ER??? For shame hospital--Don't ever, ever let another ER or any other health care professional yell at you again. If need be, have your husband advocate for you. That was VERY unprofessional of them and completely unwarranted, furthermore they were WRONG, WRONG, WRONG!!!

 

[joy]

Hi all! Thank you for the replies! It's nice to be able to have a sort of support group that understands what I am going through. I was wondering, does anybody have a tissue valve? I was just wondering. My husband wants me to get a tissue valve, ut Iwant to get a mechanical. Any advise? My mom will be here watching my boys, and I am sure she will keep everyone posted on my post op while I am in the hospital. I will be having it at the University of Washington Medical Center in Seattle.

Oh yeah, I have been trying to get that doctor that yelled at me, in trouble! I wonder if there is something gentic about having strep throat in families, because my grandma had the same thing,but she didn't have the option of having her valve replaced. She died in 1962 Well, take it easy, and thank you for all your support!

 

[Christina]

Hi Joy..

Welcome to VR.com. You have come to the right place for support. The people here can give you all the support and information you need. More than what a doctor can ever give you.
I don't know what I would have done without the people here on the forum.
I was terrified about the surgery and it consumed all my thoughts day and night. Thank God, I only had to wait two weeks. Surgery was not as bad as I thought it would be. I was very calm and prepared, because by then I had educated myself and just gave this problem to my higher power, and that is God in heaven.
My surgery had to be redone within 11 days because of a blood clot that was discovered underneath the new mechanical valve. That valve was replaced with another brand, and I now have a St. Jude's. I am on Coumadin. Coumadin has no side effects but can be difficult to regulate, and it is nice if you have a good doctor with great "bedside" manners. I have not been that lucky yet, but am not giving up. I also home test with the Protime Microcoagulation System, and I believe that is the way to go to be safe. I love it! Now I just have to convince my new doctor, and to show him that I can do this with his support.
Recovery is different for all of us. I am one year post-op and am feeling fine most of the time.

Sending good wishes your way.

Christina.
St. Jude's mechanical 8/7/2000 & 8/18/2000
Coumadin

 

[maxximom]

Hi Joy..Nice to meet you. I am a new member of this forum to..it has been so helpful to me. I just found out 3 weeks ago that I have to have my Aortic Valve replaced. I had my Cath last Friday and found out that not only does my valve need to be replaced..but I also need a triple bypass. I met with my surgeon yesterday and will schedule surgery very soon. I know how scared you are..so am I..The people on this forum are the greatest..they have all been where you and I are going..and that to me is more helpful than any words from the doctors..or even from the family members. We will both be fine..you are very very fortunate to have your Youth in your favor..I'm 70 and wish at this time I were a lot younger..but that is something I can't change. Lots of good luck..and please keep us updated.
Joan
[email protected]

 

[gary]

To Joy: Tissue valve or mechanical?

To Joy: Tissue valve or mechanical?

Considering your age, gender and child birth potential, you may have only a tissue valve choice.

Ask your doc about being on coumadin, blood thinners of any kind, and going thru childbirth.

I would think he's already considered this if your surgery is imminent.

It's better to take a philosophical attitue towards the treatment you receive from medical/surgical staff and save all your energy for preparations for surgery and post-op healing, and recuperation. Once you are on the road to recovery you may want to focus only on the future and forget about the jerks in medicine, AND seek out other physicians that have a better manner.

The chances of changing the behavior of these insensitive 'pros' is nil. We probably have little to no idea what stresses they are experiencing, hour to hour. My step daughter's husband just finished medical school and after the hundred hours or so he puts in each week, life and death become near commodities to him but he's otherwise a really a great guy.

Some of the things he says when he's being candid make me want to take him out back to the woodshed and paddle him.

If you have any particular questions, I'll be happy to respond to an e-mail at [email protected]

 

[joy]

Hi Gary, I already had my son, and he was healthy. Fortunately for me, I had a tubal ligation, because I don't want to risk the heart problems again. The obnoxious doctors were at a small hospital, and that was because they were navy officers. I really like the doctors that I have now. They are understanding, and They actually return my phone calls. They treat me like a person. I will not go to another naval hospital ever again. Right now I go to the University of Washington Medical Center, in Seattle. It's about a two hour commute from where I live, but it's really worth it to me. The naval hospital has never treated me well. I have a two and a half year old, and and my doctor wasn't behind schedule with patients, in fact when I first met her, I was on time, as normal, and she got back an hour after my scheduled appointment time from LUNCH! I was upset, to say the least. They just have no respect for civilians. I sort of decided to get a tissue valve, because I like to ski, (and usually fall on my face while racing someone) But I got a lot of information from the people here on this forum. I made out a will today, just so I have something in my file and so my kids don't go to the state. THAT would not be cool! Well, I need to get going so I can clean my house. Kids, they are fun, but a handful!
See ya!

 

[John & Joann]

Hi Joy

Hi Joy

Hi Joy,

Welcome to the greatest source of valve repair anywhere. My wife Joann has had 2 mechanicals since 1971. They were replaced in 98 along with 3 bypass.

We never thought about anything except mechanical. Coumadin has not been a big deal. Other issues are more concern. Additional children and coumadin is probably not a good idea. You can live a good medical life with mechanical valves. Medication, moderate life style, etc. are all important.

Let us know if we can be of assistance.

We are "off to Alaska" in 7 days.

John for Joann
Clicking and ticking in Ohio

 

[ticktock]

to tick or not to tick

to tick or not to tick

Joy
My my my, what a bunch of information to digest! I just read all those posts!! I had my first mechanical valve in at the age of 23! What a coincidence! That was my BESTEST surgery. I recovered the quickest and had the shortest hospital stay. Im excited for you, everything will be just fine.

I have a mechanical valve. My surgeon chose it, because of my youth and overall good health. We did not want repeat surgery, because with each comes additional risk. The Coumadin has NOT been a problem for me. I snow ski, water ski, fly aerobatic airplanes and love roller coasters. Now, I must clarify that I do not do those things today, but did up until about 4 years ago. I did not stop due to Coumadin, obviously. I had a generally deteriorating condition, resulting in yet another mechanical valve implant in 1999.

Im an advocate of mechanical in a young patient. I go with John Wayne in chosing tissue when you are 70 and have cancer to boot. Its a personal thing, kinda like Italian or Ranch on your salad. Just a touch more important.

My prayers are with you kid! I will put you on my list, and at church as well. You will find tons of support here. Chin up!

 

[Kevin M]

For Joy

For Joy

In addition to a will, you may also wish to consider a personal directive. They are called different things in different places, but essentially, it authorizes an agent (spouse or close family member) to make health related decisions on your behalf should you become incapacitated.

These documents do not require a lawyer (here they don't, anyway) and they can also specify other information like drug use, intubation, long term care, etc.

This isn't easy to do for some people, but I went as far as attaching an addendum for my wife's eye's only that specified instructions relating to last rites and other morbid things.

I did not show that part to my wife because this thing was hard enough without her thinking about that stuff. The document usually has to be witnessed and dated.

Here, each province has different rules regarding this stuff. I imagine that's possible in the U.S. too.

My thinking is that if something bad happens and my parents start arguing with my wife about my care, I prefer that she has my instructions laid out with my signature so do not make her feel bad or guilty about following my instructions.

Sorry to be so direct. I don't mean to frighten anybody. Personally, I believe it's healthy to address these things in an open manner.
Kev

 

[hensylee]

When you check into the hosp, they usually ask if you have a living will and will provide you with one if you don't. If you already have one, they want a copy of it on file. Just be sure you have one for them as it could be very important to you and family. Not that anything's going to happen, as we all know, but you always want to be safe. I got all my affairs in order after looking at their tape, didn't need any of it, but it's done after all these years of putting it off.