anyone here with a human tissue valve replacement?

[vtbecca]

19 years is amazing!

What I've heard in the CHD world is that if the aortic valve must be replaced then mechanical is preferred over homograft. Not sure where other types of tissue fall. I have a friend whose baby received a homograft and the plan was that she would need surgery probably within a year to put in mechanical. She was too small for mechanical. Sadly she passed away (not heart related) just before 2 months. It does seem that when I hear of aortic replacement it is almost always mechanical valves. They just seem to last longer. Sure there are the odd ones here and there that go a very long time but most just don't seem to, and the homografts don't consistently last as long. And really you want them to go as long as possible!

 

[Turkey Hunter]

I do... I have a human pulmonary valve with a bit of the artery attached.....I had the Ross Procedure or Pulmonary Autograph 10 years ago this month....I am doing very well and am willing to answer any questions you have!!!

Turk

 

[scotttnz]

Wow! 19 years! That's fantastic!

Yeah, i got a good 1. It is kind of sobbering to think tnat my borrowed valve lasted me longer than my own. It deteriorated pretty quickly at the end though.
I sure hope my mech valve lasts even longer!

 

[vtbecca]

How fast did it go? My son's is still in. He's 9 and it will be 8 years on Saturday. I don't think we'll get much more out of it. I do worry about the deterioration. He's starting to look tired while eating. Very tired. It worries me. Yet he can ride his bike super fast around the neighborhood. His appt. is at the end of Sept so we'll see. His first conduit went really fast. He had no symptoms in May of 2002 and was falling asleep during meals and panting going upstairs by August. This one has been great so far. It's crazy how much variation there can be.

 

[Lynlw]

How fast did it go? My son's is still in. He's 9 and it will be 8 years on Saturday. I don't think we'll get much more out of it. I do worry about the deterioration. He's starting to look tired while eating. Very tired. It worries me. Yet he can ride his bike super fast around the neighborhood. His appt. is at the end of Sept so we'll see. His first conduit went really fast. He had no symptoms in May of 2002 and was falling asleep during meals and panting going upstairs by August. This one has been great so far. It's crazy how much variation there can be.

Alot of the difference in adults and kids and how long they last is because the kids are growing and adults aren't. Justin's first conduit wasn't a homograft, but Dr. Norwood made most of it in the OR using Parts of Justin's own heart it is WAY more detailed than this, but basically he he fileted the top of the heart and flipped the ends for the beginning of the conduit, so it was still attatched to his heart (and hopefully would grow with him) and used some of his pericardial sac and filled the rest in with a patch of Gortex, he also left out a pulmonary artery since he would outgrow it, in hopes of getting him to grow as much as possible, befeore it needed replaced. (It was pretty much experimental/theory) He had a small section cut out and patched because of calcification when he was 10, and had it stented at 12, and Ballooned open more a couple times, BUT he made it to 17 and almost 6 foot before they had to replace his entire conduit (and gave him a valve) Now THAT conduit that SHOULD have lasted just about forever since it was a dacron conduit, needed a section replaced in 2 years, so you never know, pretty much just make the best choices you can and hope for the best.

Would it be possible to open Gabes conduit in the cath lab, to buy more time? It would amaze me how much more energy Justin would have after his interventional caths. I wouldn't noticed how tired and paled he looked until he would come out of the cath lab, with cloro in his cheecks. Even his teacher would comment.

 

[vtbecca]

Lyn, I'm hoping they can cath it. The first one they were hoping to but once in realized it had calcified in a wave like pattern. I think he would have needed several stents. The doc said it was too many to be safe-they'd risk dislodging some when putting in the next ones. This time I'm not sure. This conduit has been so much better from the start. His valve is in the moderate moving to severe leaking phase though, so I'm thinking they'll likely do it all at once. Thankfully the aorta is still minimally leaky and has been stable since birth, so at this point we can leave it alone. Gabe is fairly energetic but is dragging more lately. I am guessing he'll be nonstop once things get fixed again. I also think he'll probably have a big growth spurt. He's in the 5th percentile, smallest in the third grade. He weighs 52 lbs at age 9, same as his brother 2 years younger!

 

[Lynlw]

Lyn, I'm hoping they can cath it. The first one they were hoping to but once in realized it had calcified in a wave like pattern. I think he would have needed several stents. The doc said it was too many to be safe-they'd risk dislodging some when putting in the next ones. This time I'm not sure. This conduit has been so much better from the start. His valve is in the moderate moving to severe leaking phase though, so I'm thinking they'll likely do it all at once. Thankfully the aorta is still minimally leaky and has been stable since birth, so at this point we can leave it alone. Gabe is fairly energetic but is dragging more lately. I am guessing he'll be nonstop once things get fixed again. I also think he'll probably have a big growth spurt. He's in the 5th percentile, smallest in the third grade. He weighs 52 lbs at age 9, same as his brother 2 years younger!

Plus when he was so young they might not have had stents small enough, that would be able to get much larger as he grew. When Justin needed the section of his conduit replaced when he was 10 (98), his doctors had just gotten back from Switzerland and said IF we were there would could stent it, and hopefully buy enough time that he would be close to full grown when he got a new conduit, but he has to have surgery. 2 years later when he was 12 it was stenosised, but that time they were able to put 2 stents in it, they ballooned the stents a couple times, but the stents got him to the place he was close to 6 feet tall when he had his conduit totally replaced. (which considerring they made it when he was 18 months about 2 feet tall, I thought was pretty good.
Justin had a growth spurt after almost every surgery and intervention. Its amazing what the body can do when all the calories energy aren't going to getting the blood thru narrow valves and conduits and can go to growing.

We're keeping an eye on Justin's Aorta too, his valve is fine but his root is 4.3

 

[Lisa2]

Yeah, i got a good 1. It is kind of sobbering to think tnat my borrowed valve lasted me longer than my own. It deteriorated pretty quickly at the end though.
I sure hope my mech valve lasts even longer!

I hope it does, too. We're roughly the same age, you've got me by a year. It's amazing how wonderful I felt almost immediately after I received the homograft. I'm not sure how many more years I'm going to get out of this, but I hope as many as possible. The surgeon expected 7-15 yrs and I'm at 6 1/2. I'm starting to feel tired again and my husband hears a noticeable difference in sound when he lays his head upon my chect to listen. He does that all the time now because he could barely hear my heart beat before the surgery I'm curious, what kind, if any, symptoms did you experience when your valve started to deteriorate? Fatigue, etc.?

 

[scott.eitman]

Lisa,

At 12 years, I just had my Homograft replaced with a mechanical valve. I do a lot of bicycle riding and what I initially noticed is that I recovery after a ride was taking longer. On Mar 31st, after "successfully" completeing a stress/echo, my cardiogist said that I needed the valve job. I thought about it over the weeked and suggested waiting until Dec...he said I would not be able to wait that long. On June 13th, I rode 65 miles and had trouble recovering. On June 25th I hung up the Bike for the summer. By mid July, I was begging for surgery and noticing that a walk down the hall had me breathing through my mouth. July 27th was the surgery.

I also noticed that I was having fatigue symptons as well. The thing that surprised me was that they were so different than when the OEM valve failed. It was much more noticiable. I have been told that I blew the replacemnt apart, however I am not certain what that means.

It is my understanding that this is not atypical. Once the homograft starts failing, it does so fairly quickly.

Scott

 

[Lynlw]

Lisa,

At 12 years, I just had my Homograft replaced with a mechanical valve. I do a lot of bicycle riding and what I initially noticed is that I recovery after a ride was taking longer. On Mar 31st, after "successfully" completeing a stress/echo, my cardiogist said that I needed the valve job. I thought about it over the weeked and suggested waiting until Dec...he said I would not be able to wait that long. On June 13th, I rode 65 miles and had trouble recovering. On June 25th I hung up the Bike for the summer. By mid July, I was begging for surgery and noticing that a walk down the hall had me breathing through my mouth. July 27th was the surgery.

I also noticed that I was having fatigue symptons as well. The thing that surprised me was that they were so different than when the OEM valve failed. It was much more noticiable. I have been told that I blew the replacemnt apart, however I am not certain what that means.

It is my understanding that this is not atypical. Once the homograft starts failing, it does so fairly quickly.

Scott

IF I were you I would want a little more details from who ever told you you blew the replacement apart.

 

[scotttnz]

I hope it does, too. We're roughly the same age, you've got me by a year. It's amazing how wonderful I felt almost immediately after I received the homograft. I'm not sure how many more years I'm going to get out of this, but I hope as many as possible. The surgeon expected 7-15 yrs and I'm at 6 1/2. I'm starting to feel tired again and my husband hears a noticeable difference in sound when he lays his head upon my chect to listen. He does that all the time now because he could barely hear my heart beat before the surgery I'm curious, what kind, if any, symptoms did you experience when your valve started to deteriorate? Fatigue, etc.?

I guess I started to notice the tiredness, fatigue, and getting out of breath about a year out, but didn't want to believe my time was up, so tried to ignore it, and fool myself into believing I was imagining things. In the last 6 months I deteriorate a lot and couldn't ignore it.