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jonesie

jonesie

Member
Joined
Jun 28, 2006
Messages
13
Location
Minneapolis
Hi all,
I am new to this site and have heard great things about it. I am a 24 year old female, recently diagnosed with BAV and an aortic aneurysm. I have OHS scheduled on July 12th to replace my aortic wall with a dacron graft and to have my AV repaired.

About a month and a half ago I went to a new doctor for just a regular checkup and she heard a murmur. Since no one had ever noticed it before she sent me for an echocardiogram just to make sure nothing else was wrong. During this they found out I have a bicuspid aortic valve with moderate insufficiency. A week later I was sent for an MRA where an aortic aneurysm was found (4.9cm). Because I am such a small person, my doctor told me that the size of my aneurysm is considered large for me. I then met with a surgeon that recommended me for the surgery sometime this summer.

As you can probably imagine, this was all very sudden considering I never knew I was born with any of these problems and am a very active person. I have never met anyone even close to my age that has been through this and was wondering if there are others on this site that have had similar experiences. I am feeling anxious for all of this just to be over with.

One final thing, very superficial I know, but what should I expect my scar to be like? Being a young female I am very apprehensive about it.

Thanks for listening!
KJ
 
Welcome

Welcome

Hi KJ,

So glad you found us! This a great place for support and information! I had my AVR in Feb. and things are going great and I am sure your surgery will go just fine. About the scar...I don't know a lot about it but mine is starting to fade. You will get info from the ladies here that I am sure will be helpful.

We will have you in our thoughts and prayers. If there is someone who can post for you to let us know how things went please let us know.

Best Wishes,

Cooker
 
Hello KJ and welcome to the forum

The first thing you'll find is, that heart problems affect anyone regardless of age. We've had them all for babies to full term adults, so you are in no way unique or the only one that it happens to.

I would assume your going with a tissue valve being female and of child bearing years. Best thing to do is read around and any questions you may still have, just ask away.

The scar isn't all that bad as far as scars go, but it will be noticable. Perhaps some of the other girls could show you theirs? It does fade after some time, but still, if you wear low cut shirts, people can see it.
 
Welcome!

Welcome!

Hi there and welcome to this site! You will find lots of support and lots of information here~!

I guess I am in a similar circumstance as you. I had my first open heart surgery at five weeks and then another when I was 15. I am now 36 and facing my third surgery to replace my aortic valve and to replace or repair my ascending aorta. It is all very scary, but just so you know...I have lived a very normal life. I managed to keep my own valve up until this point, so I was to have two children with my husband. I have played softball my whole life, and waterskiied, etc. etc. I have lived an active normal life. Until now....I am symptomatic...very tired, cannot climb stairs well, cannot lift anything, etc. I am having surgery on the 21st of July. Please take the time to read through some of the posts on this site. They are very helpful in regards to how to prepare for surgery, what to expect after surgery, etc.

As far as your scar goes.....they've come a long way baby. Mine last one is twenty years old now, so it is faded, but still noticeable. I wear it with pride! I notice people staring sometimes, but I don't really care...and I didn't really care when I was 15 either! It can be a good conversation piece as well...lol

Well, I wish you the best and my thoughts and prayers are will you. :)

Take care of yourself.
 
Welcome Jonesie

Welcome Jonesie

Welcome to the site. I too am waiting for AVR and Aorta replacement. Where are you having yours? and who is doing the surgery? There are quite a few people from this site getting the same surgery as you this summer, one went in today so you are surrounded by supportive people who understand. Fire away with questions I have got a lot of great info from people here. Have a good day and God bless,

Randy
 
Welcome! I'm sure this has all been a shock and you feel very much an oddity since you really don't know of anyone your age, or even just anyone, with your issues. I'm glad you found us, because now you know you aren't alone.

My mitral valve prolaps and regurg were diagnosed when I was 22. I had no symptoms or anything until I became pregnant with my 2nd child at the age of 26. This was the start of the path to my replacement when I was 32. Over 14 years later, I'm happy to say that life is "normal" and wonderful!

You are very fortunate to have gone to a doctor that heard your murmur and then to took action instead of looking at your age and just assuming you're too young to have heart problems. (Sounds crazy, but many of us have been through that.)

We have lots of BAV members, and BAV's with aneurysms, so there's lots of info to find here.
 
jonesie-
Sorry you have to go through this, especially at such a young age. As a frame of reference, at this time last year I did not know I had any heart problems whatsoever and did not have any symptoms. The symptoms came very quickly, I found out I had severe mitral regurg, and was on the operating table in a span of just about five months. The bright side is that your BAV was caught and you can get it fixed and get on with the rest of your life. Some people don't find out they have a heart problem until they keel over and die from it. I was 28 at the time of my surgery and believe me, heart surgery was not a part of my plan before the age of 30. I also didn't know anyone else who had gone through the surgery, but I guess that's what this website is for. Feel free to send me a Private Message if you have any specific questions.

Mike
 
Hi KJ,
I just wanted to say hello and welcome! I'm 27 and just had my aortic valve replaced with a tissue valve last December and my surgeon purposely made my scar as small as he could and farther down than usual. I can still wear somewhat low cut shirts without it even showing, and my scar isn't very long either (maybe 4 or 5 inches). I think if you mention to your surgeon that you're a little concerned about the scar, they will minimize it as much as they can. Good Luck!

Carista
 
Welcome to the forum, KJ. I took the liberty of putting you on the calendar for July 12th so now you have to stick around so we can help you climb this mountain.:) There is lots of information here so take the next week to surf the threads and ask away with any questions you may have.
 
KJ, welcome to the site.

I'd guess that by next summer your scar will be a rather thin white line. How long it is depends on your surgeon.

I think you're very lucky to have had such good doctors who caught this in a timely manner. They should be awarded gold stars.

We're here for any additional questions you might have, or venting you need to do. It's a very scary, life-changing event; feel free to unload on us.
 
I like your screen name--Jonesie.
I guess you're not from New Joisey, huh?
I don't think your incision scar will be a big issue. My chest tube sutures left more of a place than the one running down my breast bone.
July 12 is coming right up so I'm glad you found us in time to ask some questions.
Good Luck and
Welcome201.gif
 
Hey Jonesie!
Welcome! I think surgeons these days realize we women can be a little sensitive about our incisions and as a result 'work with us' with careful techniques to minimize scarring. I don't want you to worry or be surprised but initially I was shocked at the zig zagginess of the top 3 inches combined with the two or three large lumps under the zig zag. The good news is my surgeon knew exactly what he was doing. Zig zag has formed a straight line, lumps have receded to near nothing (it's been three months). I have used Mederma on my incision and it has helped alot and I haven't been the most consistent person with applying the stuff either.:rolleyes: The incision has most definitely faded and I don't pay any attention to it any more and believe me I can be vain! The chest tube scars bother me more than anything as do the 'all over my stomach' surgical tape scars and sadly I have been more concerned about the heart incision and for the most part have totally neglected these other scars. Time to up the attention to those other areas! So - my tip of the day -if you use something like Vitamin E or Mederma try them on your chest tube areas too when you are taking care of the incision...but don't start until about week 6 or 8.

Take care Jonesie!
Debbi
 
Welcome!

Welcome!

KJ,

You've gotten some great replies already. I just wanted to welcome you to the forum and wish you the best in your preparations. Whenever you have questions, this is a great place to turn.

Cheers...
 
Ross said:
The first thing you'll find is, that heart problems affect anyone regardless of age. We've had them all for babies to full term adults
Click to expand...

*grins devilishly*

And some of us fit both ends of that spectrum ;).


Seriously, tho, jonesie, you've some to the right place. Thoughts/prayers coming your way as you get ready for surgery.



Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"We got mountains to climb" ... Rod Stewart ... 'Broken Arrow'
 
Hi, KJ.

Welcome! and I must say that I'm glad you found this place. I found it a few months ago as I was adjusting to the idea of surgery for BAV and aortic aneurism. I got lots of great info and opinions from the folks on this site... more than anything it helped me a lot to hear how folks carry on with their lives after their surgery with only minor adjustments, if any.

That will be great if the surgeon can repair your valve. Mine was not a candidate for repair so now I tick with a mechanical AV. My BAV was discovered at age 36 (11 years ago), but I had no symptoms so there was no need for surgery until the aorta swelled to about the same size as yours. My surgery was 3 weeks ago.

My best wishes to you and Godspeed to you and your surgical team!
Jimmy
 
It is not easy to get the diagnosis that you have not only a problem with the aortic valve, but also an aortic anuerysm..... but it is very important to find this before an emergency develops..... so I am very glad to read about so many on this thread who have been diagnosed in time.

I want to share this link here, for the benefit of anyone wanting a clearer picture of their aorta - Dr. Isselbacher's audio/video is very helpful and he covers special considerations for those who are BAV. It is the first link on the page below.

http://www.bicuspidfoundation.com/Medical_Information.html

For those wanting to know about pregnancy after valve and aortic surgery, you may want to read about Jodee's experience under Dr. Sharo Raissi's care at Cedars-Sinai

http://www.bicuspidfoundation.com/Stories_of_Hope_Jodee_Richesin.html


I also want to list the Cedars-Sinai Aortic Surgery Program, where Dr. Raissi is the Director. There are some FAQs specifically about BAVs.

www.cedars-sinai.edu/aorta

In addition, no one knows how frequently it may occur, but some of those with BAVs have been found to have brain aneurysms. Dr. Wouter Schievink published about this while at Mayo. He is now at Cedars-Sinai. You may want to read Carrie Mettler's experience. Personally, I would want my brain scanned as well as my aorta.....

http://www.bicuspidfoundation.com/Stories_of_Hope_Carrie_Mettler.html

I hope some of this helps.

Best wishes to all,
Arlyss
 
Hello and welcome!
I am 31 and had valve replacement surgery 3 months ago. I probably should have had it when I was 24...my heart had deteriorated greatly by the time they did surgery, yet I had no symptoms so it was all a suprise to me too! I can relate! I am also very active too. You can PM me if you have any more specific questions. YOu are very young to have this happen to you, but you are not alone. You would be suprised how many young people have shared your same experience.
As for the scar, mine is long and alot higher than I thought it would be. My advice, Vitamin E, VitaminE, VitaminE!!!!! I did a science experiment where I put Vit. E on only half of my scar. The top part of my scar (Vit. E) is soft and pink and flat. The bottom part is raised and dark purple and UGLY. It looks like a worm on my chest. I am told that it eventually turns skin color and doesnt show up so much. Good luck and keep us posted.
 
Hi KJ, welcome to the site! I am a 24-year-old female as well, and had a mitral valve replacement about three years ago when I was 21. I never even considered something could go wrong with my heart until after I woke up from the surgery. It sucks to have to join this club at such a young age, but the members are great.

My scar has faded considerably and almost matches with my skin color now, but the top part has keloided and is still quite visible (sort of shiny baby-pink, and not as cute as it sounds). It is 6.5 inches long and starts about 1.5 inches below the collar bone. V-necks and boat necks (lower cut ones) would show the top inch or so of the scar. I used to try to will myself into thinking that I finally looked like I had some cleavage, but now I guess I just accepted the fact that I have the scar and don?t have much else in the same area. My surgeon tried to minimize the scar as much as possible as well. My case was an emergency so having a good view came before the cosmetics, but with a planned surgery like yours, hopefully the scar is much shorter and starts lower than mine.

Feel free to PM me for anything. Best wishes on your upcoming surgery.
 
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