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C

Country

Well-known member
Joined
Jun 12, 2010
Messages
92
Location
Montana
So im 23 and have conditions typical of bicuspid aortic valve disease... im told
I have a Leaking Vavle and my aorta seems to be dialated to 3.9 cm

I live in central Montana and am looking to leave the state to get the best care!

I believe that i am looking at getting a mechanical valve because it will last my lifetime but i didnt know that there is so many different options for brands and what not.... i guess i still dont know too much about the different brands or styles....

How bad do the anticoagulants make you bleed? im a sheet metal worker and i get cut almost daily.

Doctors: i have been in contact with Dr Sharo Raissi in Los Angeles and he seems to be highly recomended and accredited. It sounds like he is my best option on this side of the country. He personally called me the other evening and he gave me his personal cell phone number! So far he technically isnt my doctor... he is not recieving any compensation for his time and effort to review my reports and discuss with me!! i have never had a doctor care this much! Is there anything i need to or should know about him?


wow there are some big discions to make and i am looking forward to reading any input you all can offer!! Any other info to be known is appreciated... i will continue to surf the forums for more info!!


Thanks
 
:wink2:
Country said:
So im 23 and have conditions typical of bicuspid aortic valve disease... im told
I have a Leaking Vavle and my aorta seems to be dialated to 3.9 cm


I believe that i am looking at getting a mechanical valve because it will last my lifetime but i didnt know that there is so many different options for brands and what not.... i guess i still dont know too much about the different brands or styles....

How bad do the blood thinners make you bleed? im a sheet metal worker and i get cut almost daily.




Thanks
Click to expand...

Welcome to this forum.....At 23, I agree that a Mechanical Valve is the logical choice. There are a great number of posts here about the current valve choices and I'm sure that others will be around to explain them. I can't help because my valve was finally taken out of production in 2007 (after many successful years of use).

Warfarin(coumadin) is an anti-coagulant and it does not "thin" your blood. It only delays the clotting time a little. It could give a sheet metal worker a few problems in dealing with cuts, but only if the cuts were severe. Learn to wear gloves:wink2:......besides, you may not be a sheet metal worker forever, but you will have a valve forever. I have been on warfarin a long time (43 years) and have had few problems with the drug. However, once you are on the drug, you MUST take it as prescribed and test on a regular basis.

Again, welcome to a very, very good source of information:thumbup:.
 
I wouldn't worry about the cuts. If they were severe, you'd be in trouble without coumadin, same with coumadin. I've only been on warfarin for 8-1/2 years, I do woodworking and get cuts and splinters all the time, without any problem. If I use a bandaid, it's to keep the blood off the wood, not because I'm bleeding to death or anything. Again, if I were losing fingers or other body parts, I'd be in trouble without coumadin, same with coumadin. Welcome to our forum!
 
Hello and welcome to this wonderful community.

I believe there are many forum members who have used Dr. Raissi. Why don't you try the advanced search button up there and see what you come up with.

You sound very calm and level-headed about your news. GOOD!!! This is all a very manageable piece of your life. There are SO MANY people here who can help you with the emotions and decisions you are facing. None of us are really doctors, we are here to support each other with personal experiences and warm caring wishes. One thing I think we do well here is help newbies gain a good strong voice with their doctors. We can help you formulate questions and you can get the answers from the right people.

The more you learn as you read and get answers, the more overwhelmed you may start to feel. Believe me -- we've all been there!!! Just know that you can put together a successful plan for yourself and you will be able to piece it all together for yourself. Just breathe!! ;o)

Feel free to ask any questions of this community. It is often best, with each new type of question, to start a new thread. Then, with a specific title to the thread, you will get many more answers.

Thank you for joining us.

Best wishes.

Marguerite
 
One thing about this disease, it doesn't discriminate based on age. Sorry you have to start all this at such a young age, though your not the only one.

Anticoagulation is not at all what your hearing about. I'd ask that you do some studying in the anticoagulation forum, starting with the stickies at the top and going on from there. Contrary to probably everything you've heard, you don't have to make any major lifestyle changes, diet changes, job changes or most anything else. If you get cut, you'll bleed and stop the bleeding the same as you always have. So long as your in your prescribed range, you probably won't notice any difference in the time it takes to stop the blood.

As for Mechanical valves, there are many with St. Jude and On-X topping the lists, but any valve that fixes your problem and keeps you alive, is a good valve.
 
Welcome to the forum! Sorry you have to get this fixed at so young an age, but I think you're on the right track going mechanical if you can. Who wants another surgery later on? Sounds like you have a good, caring surgeon lined up and that's great. Theres lots of good info here on anticoagulation therapy, etc, so stick around here and keep some of us old head BAVers company for a while!:D

Best wishes,

Jim
 
Hi Country

Welcome. I am also pretty new to the group. I am sorry to hear you are having problems so young. Sounds like you are on the right track. I can't answer many questions yet since I am waiting for my AVR on Aug 9. Will be happy to give you support and listen to your story.

Good Luck. From what I have read, many have gone before us.
 
Country,

Welcome to VR.org forum, there is much to learn and ask, from members that have and are living with heart disease and corrections...ask away

Sounds like you are already making excellent rapport with a surgeon and he will be able to provide you with good guidance on best valve for you and why

There was a young man in England, Dan, a former member of VR i believe that recorded his journey on you tube, you many find it helpful and informative

http://www.youtube.com/watch?v=XhnSH8omVcA&feature=related

All the best with the journey
 
Hey Country, welcome to this absolutely WONDERFUL forum! It's been a lifesaver for me and I think several others that have joined after me would agree. I don't know how I would have gotten through this without this forum! Found out at end of march this was the year I was gonna need surgery, and had my surgery a little over 5 weeks ago (5/5). I just can't say enough great things about this forum! It not only helped me before surgery (which was the worst part – the waiting) but has also helped tremendously afterwards, even while in the hospital (my hospital had wireless) and during my recovery at home.

Ok, with that... I also agree you're making the right choice with mechanical. Ross already mentioned a couple of the more popular brands (St. Jude, which is what I got and On-X). I think another big one is ATS. Your surgeon will probably have a preference too, so make sure to get his opinions and reasons for his opinions. You'll have lots and lots of questions - you haven't even scratched the surface yet. So keep posting 'em as you think of 'em.

Also agree with everyone about Coumadin not being that big a deal. I've been on it since my surgery 5 wks ago, and it hasn't been much of an issue for me, other than the periodic finger pokes (I know, I know, I'm just a baby when it comes to needles and finger pokes - but it's the way I've always been so can't help it).

The first thing I'd recommend you do is watch these videos below by a guy named Dan over in England. These were VERY comforting to me in the weeks leading up to my surgery. And I can now happily report that his experiences were very similar to mine. It's just nowhere near as bad as I feared before I started watching his videos, and now that I've been through it, and have talked on here to several others that have been through it even more recently than me, and the vast majority agree - it's just not that bad! So watch these (and some of his others if you're interested - there are links to his other ones on the right side as you're watching one:

Aririving home - 4 days after Surgery
http://www.youtube.com/watch?v=xaCvvgcL-hU&feature=related

1 week after surgery (3rd day being home) Note, he's really feeling great by this day, which I totally related to at about that same point
http://www.youtube.com/watch?v=H5RdSd25J2k&feature=related

2 Weeks after surgery
http://www.youtube.com/watch?v=Kde95-mbwj4

Edited to say that I just saw gil posted one of the same videos while I was typing lol. Gil and I (and Malibu and a couple others) have shared many experiences because our surgeries were pretty close together. You'll find others on here that are likely about the same time as you. I think it helps to adopt an OHS buddy or two to go through this with. I think Angel & Penny are doing that. Maybe you can hook up with them, or that other one that just posted yesterday or today (can't remember their name now - but you should find their post pretty easily if you click on the "what's new" tab).
 
Last edited:
Country said:
. . . Doctors: i have been in contact with Dr Sharo Raissi in Los Angeles and he seems to be highly recomended and accredited. It sounds like he is my best option on this side of the country. He personally called me the other evening and he gave me his personal cell phone number! So far he technically isnt my doctor... he is not recieving any compensation for his time and effort to review my reports and discuss with me!! i have never had a doctor care this much! Is there anything i need to or should know about him? . . .
Click to expand...
Welcome to the site :)

He operated on a member, Harleygirl528. And he has operated on the husband of another member, Arlyss. You may be able to send either of these two a Private Message. There may be other patients of his on the site but those are two that I know of.
 
Lily said:
Welcome to the site :)

He operated on a member, Harleygirl528. And he has operated on the husband of another member, Arlyss. You may be able to send either of these two a Private Message. There may be other patients of his on the site but those are two that I know of.
Click to expand...

Oh k good well Arlys is a member on here then!! She is the one that put me in contact with the dr and has helped me so much with my knowledge and understanding of bav. she is really amazing!!


Anyhow!! Thank you all for your support and comments!! a lot of imformation to soak up and process that is for sure!! there are a few big decisions to be made but the most important is that Dr Raisssi is dedicated to his work and patients!! he seems to be a wonderful person and i am looking forward to meeting him and Arlys!
 
Arlyss is a valuable source of information and really knows what she's talking about. Wish she'd post more in here.
 
hey there :)

i am a 28 year old female and just had surgery may 21st. i had my valve replaced, and also had an aneurysm in my ascending valve. before surgery, the tests showed my aneurysm was 4.8cm, but when they got to it during surgery it was only 4.2cm. Still repaired it though. I chose a tissue valve. I can't help with valve choice, its a very personal decision and you will have to get as much information about all valve types as you can and make the decision yourself. If you need any advice, or have ANY questions about the surgery process or what happens before or after, please just ask! I like to help with whatever I can.

take care,
jackie
 
Hi Country,
Don't worry about selecting a brand of valve; your surgeon will have his preferences. I was supposed to get an On-X valve but got a St. Jude instead because the On-X wasn't fitting right. Your decision really only needs to be about either tissue or mechanical and sounds like you have a good grip on that.
 
Hi, sorry this is late, but I just realized you were 23. My son is 22, he didn't have aortic valve replacement, but has a couple heart surgeries, the last when he was 19. He doesn't post to any heart groups but if you have any questions, I'm sure he would be glad to help. Also you might be interested in the forums at the Adults with Congenital Heart Defects site. There are quite a few members in their 20s and 30s. http://achaheart.org/
 
Welcome aboard. I had my first AVR two days prior to my 18th birthday. I also went mechanical so I wouldn't have to have surgery twice. Didn't work out that way. My aorta ballooned on me and ended up having surgury again almost 19 years after my first surgery. The plus about the mechanical valve is that it was still fine. I had them replace it anyway while they were grafting the aorta just to make sure it was still the right size (when a little bigger this time) and to have a one piece valve and graft.

The 3.9 aorta would have me a bit concerned. Not that it's of any size to be alarmed, but I'd want to know how fast it was growing before I went in to have the valve replaced. If you're looking at 5 - 10 years on the aorta, you might as well go tissue for now and hold off on the clicking and medicating for a while longer. If they are willing to graft the aorta now, then go mechanical. My aorta went from 2.6 cm to 4.9 cm in about three years time, for what it's worth.
 
yeah i had a CT A scan the other day and it showed that i actually have a arotic root aneurysm of 4.5cm. and with my valve leaking on the severe side it is a little alarming to me! However the only thing that makes a surgeon here in MT want to cut me open is that i am consistantly having chest pain.
 
Country, my cardiologist told me (at least in cases like mine) he goes more by symptoms than than the readings from the echo cardiograms. Not downplaying the echos - they're important too - just saying he believes the symptoms can be a good indicator it's time for surgery. Chest / back pain is one of those symptoms to watch for (along with shortness of breath and light-headedness). Not sure if that helps at all, but thought I'd mention it.
 
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