Life Expectancy

[Lynlw]

based on the research i did ross procedure has a low risk of reoperation. I wonder why I need reoperation after 11 years

Which valve needs replaced? (If you said before if it is the pulmonary or Aortic sorry) Alot can be involved, since you were 9 at the time, it could be something as simple as you outgrew the valve. I know there are quite a few studies on the Ross procedure and children, which studies on Adults may be different than for kids having heart surgeries. I know Dr. Spray at CHOP (children's of philly) has written a few articles about Ross and Children.
Also sometimes things just happen, Justin's dacron conduit should have lasted a very long time, a section of it needed replaced less than 2 years later.

 

[Alex]

I believe my aortic valve needs to be replaced

 

[Alex]

Just did my research on the blood disorder I have and apparently only 1 person is affected for every 1 million

 

[Lynlw]

Just did my research on the blood disorder I have and apparently only 1 person is affected for every 1 million

Aren't you lucky to get all these rare things.. What is the name of it?

 

[Alex]

Aren't you lucky to get all these rare things.. What is the name of it?

bernard-soulier

 

[carolinemc]

Just came in and notice your thread. Because of ohs, people do have longer life spans than there were 30, 40, 50, etc years ago. When I had my repair years ago, the type of bypass was a new procedure for children at that time. Now, they even do newborns minutes old. So, best advice along with the other here, get educated and be proactive with thew doctor and surgeon. It will do your mind good and relax. You are in good hands here.

 

[Lily]

im not sure why but i cant stop feeling like my life is over. Its weird because ive already had my ross procedure when I was 9 but this is all becoming very real for me

Alex, I can't help but think that you may be feeling like this because of your aortic valve failing. Others here have expressed feelings like this, when their valves weren't functioning correctly. With a new properly functioning aortic valve, and after you recover from the surgery, you should be feeling much better. Best wishes

 

[Bryan B]

Just a FYI about the Ross Procedure as they continue to learn from past experiences and improve it. I had my surgical consult on Friday and the surgeon I talked to said that they now wrap the aortic root with dacron during the initial surgery to eliminate (or at least greatly reduce) the chance of aortic root dilation. When the RP was first developed they did not even replace the aortic root. They also replaced the pulmonary valve with an aortic homograft valve (they were in better supply) but found out that they did not fare well in the long run so they started replacing the pulmonary valve with a pulmonary homograft with much better results. So just like valve surgery advancements in general the Ross Procedure continues to advance as they gather more long term results. It just sounds like that me and you Alex ended up on the wrong end of the statistics as they still show that the vast majority of patients get longer than average time without resurgery than those who chose a tissue valve. I made the choice to have a Ross Procedure (I was 43) hoping that I could get the longevity of a mechanical valve with the advantages of a tissue valve. Also since I had endocarditis this surgery gave me the lowest odds of contracting it again. I rolled the dice, made my choice, and now I have to deal with the consequences. If I had to do it over again I probably would have made the same choice. As they say hindsight is 20/20.


Aortic Root now at 4.7cm
Ascending Aorta at 5.7cm
11/9/10
(can't change signature)

 

[michela]

Alex, I'm in the school of Policy, Planning and Development at USC getting my masters and am facing this same problem. I'm 29 and need to get a valve replacement soon. I'm very depressed about it as well, but this site has helped me immensely. PM me if you'd like to get together in person, it may be nice to talk to someone else going through the same experience! Fight on Trojans!

 

[kerri73]

Hi Alex! Hang in there as you move forward with these upcoming decisions, and rely on your doctors and do your own research on everything as well...

I'm in your boat in that mine was congenital also... and I can't say that I don't think occasionally about life expectancy or how I might die some day. I am up to 5 surgeries so far (opened twice this past time)... I'm now 37 and my first surgery was at 6 months.. I chose a mechanical valve... I also had to have it replaced 12 years later, so nothing is fool-proof. For me, the coumadin hasn't been an issue at all, though (I've been on it since my first artificial valve at age 24).

There are many of us around if you have any questions as you move forward! Feel free to message me anytime as well.

Good luck!!
Kerri

 

[Alex]

SOO alot has changed lol . I havent been on in a while but ive received good news from a couple of doctors. Basically my hematologist did tests in 2003 and apparently the diagnosis of bernard-solier was a misdiagnosis and i do not have it. I just have a minor platelet storage dysfunction and its nothing i should worry about. Also, I found out that my aortic valve has minor regurgitation which does not need to be replaced. It is the pulmonary valve that needs to be replaced because it has stenosis. I am thinking about doing the Melody transcatheter implantation procedure but am not sure yet. Here is a link that has some info about it: http://www.medtronic.com/melody/

And thank you for your support michela and everyone else that has helped me feel a bit better about this situation!

 

[Alex]

I have my catheter exam scheduled for dec. 16th so we will see how severe my stenosis really is. Im not even sure it will be very severe because i feel fine/ dont have a shortage of breath throughout the day. I actually thought i felt better this year than i did a year ago.

 

[Lynlw]

Glad to hear you don't have the bernard-solier.
it makes sense it is the pulm valve that needs replaced, that's why I asked which valve before. IF you are a candidate for the Melody, I personally would go for it..actually we talked about Justin getting one when it was still in the trials in 07 but he wasn't a candidate. I know a few kids that have had them and are doing great,

 

[Lynlw]

I have my catheter exam scheduled for dec. 16th so we will see how severe my stenosis really is. Im not even sure it will be very severe because i feel fine/ dont have a shortage of breath throughout the day. I actually thought i felt better this year than i did a year ago.

IF you chose to get the Meloday, would they do it on the 16th or would you have to have 2 caths?

 

[Alex]

IF you chose to get the Meloday, would they do it on the 16th or would you have to have 2 caths?

Well i spoke to the person that would be doing my melody implant and this is what we worked out with her. I am getting the cath test on dec 16th to see how far gone my valve is. After I get that test i will meet with her and she will tell me if she thinks that it would be safe to get the melody implant. I want to make sure what she thinks before I make my decision because there is the risk of the valve cracking when they inflate the balloon. If she says that everything looks good and my valve looks like it wont crack or anything then I will make my decision whether to proceed or not. If I choose to proceed then I will have my melody implant in may most likely.

 

[Lionheart]

Alex,
I have to honestly tell you that you've really settled down from your first few posts when things were so uncertain. I'm happy to see that you are moving forward with such a positive attitude about your future surgery. Keep that attitude with you because it will help you get though the surgery and the healing. Stay focused and get better. I commend you and wish you the best.
John

 

[Lynlw]

Well i spoke to the person that would be doing my melody implant and this is what we worked out with her. I am getting the cath test on dec 16th to see how far gone my valve is. After I get that test i will meet with her and she will tell me if she thinks that it would be safe to get the melody implant. I want to make sure what she thinks before I make my decision because there is the risk of the valve cracking when they inflate the balloon. If she says that everything looks good and my valve looks like it wont crack or anything then I will make my decision whether to proceed or not. If I choose to proceed then I will have my melody implant in may most likely.

Thats sounds like a very good plan. Also depending where the stenosis is they might be able to put off the valve replacement for a while by either ballooning it wider or maybe even stents.

 

[Alex]

thank you everyone Still a little scared but not feeling the same way i used to. A little nervous about the cath test on the 16th but I guess thats normal before any medical procedure. Do any of you have experience with the melody valve? I am worried about the stent fracturing since there is a 35% chance of that happening within the first year.

 

[Lynlw]

thank you everyone Still a little scared but not feeling the same way i used to. A little nervous about the cath test on the 16th but I guess thats normal before any medical procedure. Do any of you have experience with the melody valve? I am worried about the stent fracturing since there is a 35% chance of that happening within the first year.

I know of a few people, but don't think anyone here has had a Meloday valve (there aren't that many members who've needed pulmonary valves replaced) Have you joined the forums at the Adults with CHD site? I'm pretty sure at least 1 person had it maybe more (I rarely go there any more so can't give names)
here is the link if you're interested http://www.achaheart.org

 

[Alex]

thanks lynlw!