New member

[Kym]

Hi! My name is Kym. I am a new member for this site, which I stumbled across while I was doing research. I am 25 yrs old and live in the Boston area. My pediatrician discovered I had a bicuspid aortic valve when I was 4 during a routine check-up. I followed up w/ EKG?s until I was in my teens. All looked well so I just stopped going for check ups and continued w/ antibiotics when going to the dentist. I was never restricted in anything. Nothing bothered me except OTC medicines would speed up my heart beat but that is it! A year ago I passed out and was hospitalized in Boston. I was admitted on the basis that I had a rapid heart beat. I did a stress test, which I passed, a tilt table test, which I HATED and stopped before any result could be made, and an Echo. The echo showed I had a 3+ leak. I was sent home with a loop monitor. I was sent to a cardiologist for follow up. I was restricted to no heavy lifting or forceful exercise. For the 1st 5 months after I passed out I was actually restricted to 5 pound max. That was impossible and ridiculous. I was put n no meds as my bood pressure is already on the low site, I do nto smoke and I weight 100 pnds on a good day.

I did notice that my echo shows mild regurgitation of my mitral valve and trace regurgitation of my pulmonary valve and a dilation of my ascending aorta (4.0cm? I think). I?m not sure what that all means but it was in the conclusion.

Anyway, I feel fine, winded at times and sometimes have palpations but nothing major. I am actually now back at the gym and lifting weight on nautilus, the minimum amount the machine will allow. Come on! Is that really so horrible ?? I have researched surgery and have my heart set (Ha! Ha! Ha!) on the Ross procedure. That seems like the only solution as I plan on having children when I am married. My cardiologist is against that idea and told me to look at my possiblities of having children soon rather than having the Ross procedure as a fall back. Huh? I am 25!! Come on! I have a wonderful boyfriend but we are in no rush. We don?t feel an illness should speed up things. My cardiologist recommend I look into Brigham and Women?s b/c when I do have a child I will need to give birth at a hospital equipped for high risk pregnancies.

That leads me to now. I found a surgeon that does Ross procedures at Brigham and Women?s. He referred me to a cardiologist there. I have an appt with my new cardiologist in Sept. In the mean time I had to switch my primary care physician b/c she was unable to refer me outside her area. That sucked. I really liked my primary.

So, that?s my story! It is all pretty overwelming to me. I do my research in stages. Thansk for letting me share! hope to get some insight from some of you!

 

[Hank]

Welcome Kym

Welcome Kym

I am the creator of this site and wanted to welcome you to the family. I am now 34 and when I was 32 I got an infection in my blood through a broken wisdon tooth. I never knew that I had a bicuspid aortic valve until they did the echo an told me that my valve had been destroyed by the infection. So here I am 2 years post op with a shiny new St. Jude mechanical valve and doing great!

Infections can be gotten very easily and as you can see, and have experienced yourself, can do MAJOR damage.

We are survivors and fighters.

Welcome.

 

[Nancy]

Welcome Kym

Welcome Kym

Hi Kym-

Glad you found this site. You'll get a wealth of information here from those who've "walked the walk". I don't know much about the Ross Procedure, but there are several members who've had it and I'm sure they'll help.

My husband has two mechanical valves, and just had a repair on his mitral mechanical. He had rheumatic fever as a teen.

 

[Kevin M]

Other Options

Other Options

Unless there are other factors affecting the choice of AVR procedure, you are not limited to the Ross Procedure.

As I understand it (I'm no doctor though), the complications with pregnancy and childbirth come with the anti-coagulation that is necessary with mechanical valves.

In addition to the Ross Procedure, there are a few biological tissue alternatives you may wish to consider. Among them, the Homograft, Porcine and Bovine valves.

You may already be aware of this, but in the event you weren't, I thought you might like to know.

Welcome to the group. I hope you will find this bunch as supportive, helpful and friendly as I have.
Kev

 

[hensylee]

Welcome, Kym. This is the best site you could find for information for your heart. You can ask all kinds of questions and get many answers to every question, so feel free. This is what Hank intended when he began the site. God bless.

 

[Christina]

Hello Kym,
A warm welcome to you. This is the greatest place on the Internet to come for support when you are facing heart valve surgery.
Many of us have gone through this surgery and came out fine, but without the support that each of us so graciously received it would have been much more difficult.
All of us are different Kym, and have different heart valve problems.
Some of us were unable to choose a valve beforehand because we came in as an emergency and the surgeon made the decision for us. Or some of us chose a valve but when the surgeon opened us op he wasn't able to use that valve.
Most of us are able to make an educated decision before we go in. The decision is very personal and individual, and no one should tell you what to do or criticize you in your choice.
There are a few of us that have had the Ross procedure, so ask away. They will come on the site soon and answer all your questions.
I can only tell you what I have experienced since I received my mechanical valve almost a year ago now.
Mine was congenital from birth but have lived with it until last year when I finally had that heart murmur checked out thoroughly. I was not given a choice in valve, but I still would have chosen the mechanical because was told that the others don't last and this one does. I hope I don't have to go through this ever again.
Let us know how we can help you!

Christina

 

[martha]

Hi Kym,

My name is martha, and I had an aortic valve replacment on 12-15-00. I choose a homograph, at the time I was 49. Although I am from new england I am now liveing in north carolina. There are those in the group who have had surgery at the brigham and say it was a wonderful experience there.

I'm glad that you found us. There is a wealth of knowledge in this group. The more you know the better it is. Your doctor will be surprised, and you will be able to talk to him/ her on a different level. Looking forward to hearing more from you. martha

 

[Scottie]

Kym

Kym

Hi Kym ...welcome to the site ...the others on the site will be able to help you more with the valve choices but I can relate well to your story ...I was born with Congenital Heart Disease and had operations as a child ... gave up checkups when I went to University,life was so good .However when I was the same age as you the Drs told me if I wanted to have children I should have them right away due to the risks later ....we had other things we wanted to do with our lives first ..but we did want kids ,we also were told that there was a risk of our children inheriting my CHD. We went ahead and had our kids .a healthy son who is now nearly 16 and two daughters nearly 15 and 8 ...the care I got when I was pregnant was second to none ...and for this I will always be thankful ...so we didn't see the world or make our fortunes ..but our wonderful family has given us far more pleasure and fun than money or travel ....
I am at present waiting to see if I need a new valve too .. I wish you all the best with your decisions ..
Scottie

 

[Kym]

Thank you all for your warm welcomes! it is great to be part of the group!

 

[RobThatsMe]

Hi
Kym,

Welcome to the site from a former Bostonian, currently transplanted to Nashville, TN.

I had an aortic valve replacement, emergency surgery.. so, wokeup with a mechanical St. Judes heart valve.

One of our members here, Ben Smith, had the Ross Procedure, and also did lots of research before having his surgery. He is very busy now, having a new home built, but still checks the site.

I would recommend that you click onto the members list, and write to him with any specific questions that you may have about the Ross Procedure. I am certain that he will provide you with some good response and additional resources to check into.

Wishing you good health,

Rob

 

[Turkey Hunter]

Welcome

Welcome

Hello Kym.
I too was diagnosed at a young age with conginital heart defect. Although I was slightly mis-diagnosed as having stenosis when in fact I Had AI.
I agree with everyone is stating about not limiting your options,
but I had the Ross Procedure at the Cleveland Clinic, so I am a bit bias.
But what I really want to stress is not limiting yourself or "setting your heart" on something until you have researched every option, weigh the pro's and con's of each.....And finally make an Educated choice that suits and fits you as an individual. Every situation and person's situation is different.
Getting feed back from those of us who have had AVR in one form or another is a great place to start, and of course the idea of children, I am sure, is a major deciding factor.

Good luck and keep us posted on your progress,

Ben Smith

 

[JimH]

Hi Kym,

I had my surgery at Brigham and Woman in June of 2000. My surgeon was Lawrence Cohn and I chose the homograft and have been doing great ever since. I can't say enough about the care I recieved there. The nursing staff is constantly looking after you and were very pleasant to deal with. I now see a cardiologist at Brigham and go in for yearly checkups. Good luck with your decision making process.

Jim

 

[Lisa in Katy]

I too was told around age 24-25 to go ahead and have children. I was engaged but not married, and I really didn't worry about it because since rheumatic fever at age 14, I was told that surgery could be "any time". I figured it was in God's hands, not mine.

I got married at 26, Hannah was born just before I turned 29, and Nicholas was born just after I turned 31. I had surgery at 36. I was actually told to have my mitral valve repaired before having children, but I felt great, and didn't listen. I was followed closely by OB and Cardiologist throughout my pregnancies, and had few problems that were heart related. My OB had told me that my goal was to make it 32 weeks, and I would deliver by C-Section. After a good pregnancy (lasted 41 weeks with my first), I convinced him to let me try a normal delivery. Again, God was on my side and all went well.

Although this approach worked well for me, I am not recommending that you go against your doctor's advice. You might want to get a second opinion. Repair or replacement with a tissue valve are options that don't rule out childbirth after surgery. It ends up that my valve couldn't be repaired, so to avoid future surgeries, I have a mechanical. My decision would have been different if I had the surgery before children.

 

[fdegranville]

kYM--

kYM--

Hi Kym and welcome,

I read your post as well as Lisa's in Katy. My story is very similar. I was diagnosed with rheumatic heart disease when I was 26 (after passing out playing tennis). It was identified as mitral regurgitation on the echo. That was 21 years ago and cardiac imaging techniques have come a long way since then. I too was advised to have children sooner rather than later. My left ventricle was already dilated and my doctor knew I had mitral stenosis because he coud hear it, but it did not show on the echo (only m-mode in those days). To make a long story shorter, I have two teenage boys who were well worth the risk.

I am now 47, and the current diagnosis is moderate mitral stenosis with pulmonary hypertension, some MR and TR, 3+ aortic regurgitation with very mild stenosis. I work full time, but realize at some point the need for surgery will arrive. I was very lucky to be carefully managed through both pregnancies and as you say consulting with an ob/gyn who specializes in high-risk pregnancy and will work closely with your cardiologist is very important.

Best of luck to you and let me know if you have any questions.
fdeg