22 year old trying to make THE valve decision. pulmonary valve

[mkotobi]

Hello everyone, this is my first chat. I am 22 and I have a surgery coming up just before Christmas. I need my pulmonary valve repalced. I am a senior and working on my electrical engineering degree. I was born with a heart defect for which they performed a cardiac cath procedure at birth. My valve was sticking at birth and the procedure was done to open it up. It worked well except it wasn't closing completely, causing blood to leak back into the ventrical. My ventrical has stretched. In addition to the leaky valve getting worse, I have a heart rhythm problem when I exercise. My heart beat sky rockets and I get dizzy. I have been seeing the Dr once a year to ensure everything is ok. Now I reached full maturity and my body stopped growing, Dr said it is time to do the surgery since my right ventrical is now enlarged. I am trying to decide between a donated valve and stented epic valve. Our surgeon in Albuquerque is suggesting the donated valve, while a Denver surgeon suggests stented epic. Any ideas? My doctor hopes that the heart rhythm problem will be fixed as well as the leak, but no guarantees.

 

[Greg a]

.............., I had a MVR (ring added) so I didn't have to choose but I did want to welcome you to our family ...Hank has created a family of OHSers (open heart surgery) number about 1,500 so there is a wealth of knowledge and support as you travel this road

 

[Debbrn]

welcome to the board.

I have had 2 pulmonary valves so far. The first one was a cadavar valve that lasted 19 years. The second one I received last may is a carpentier edwards bovine valve. Different docs are comfortable with different valves.

Debbie

 

[mkotobi]

Hi Debbie, thanks for the quick response. I am very glad to see your cadavar valve lasted 19 years. I have read about tissue valves not lasting long in younger patients (5 to 7 years only). Was your second surgery an OHS as well. Josh (22 year old).

 

[Lionheart]

Hi mkotobi,

Albuquerque? Are you a UNM Lobo? What do they call their basketball arena? The PIT? Hey I'm in Colorado- Go Rams!
Anyway, If you are getting conflicting opinions then you might consider getting even another opinion, especially if you can get one from a hospital and surgeon that does a lot of and specializes in heart valves. The surgeon that you chose will have a big influence based on what he prefers to install. As far as valve type there are others around here with experience with pulmonary valve surgery and they will probably provide some useful insight. I think I'm right, but I believe the short life of tissue valves in younger patients is when they are placed in the aortic position . I think they last longer in other valve positions where there is less pressure. Someone please correct me if I'm wrong.
Welcome to the site- glad to have you as a new member.
Best,
John

 

[malibu82]

hey there

i am 28 and had my aortic valve replaced in may. i chose a bovine tissue valve, (cow)

so i don't know much about the epic valve. from what i just googled, it seems to be a porcine (pig) valve.

i know i was told that cow valves were known to last longer then pig ones. but who really knows, our bodies all react differently!

either way, good luck with your decision, i know it is a hard one to make

jackie

 

[Debbrn]

Both of my valve surgeries have been OHS. The next time they are hoping to do it in the cath lab. Yes my tissue valve lasted 19 years, but that is longer than usual. Ask the surgeons how many pulmonary valve replacements that have done in the past year.

Debbie

 

[mkotobi]

Thanks for the responses this is all very helpful. Yea I am a Lobo! Maybe we can crack the top 10 again! I am heading to Denver today to talk to Dr. Max Mitchell. Any thoughts on this doctor or hospital?

Thanks,
Josh

 

[Lynlw]

Hi Josh, My son Justin is also 22. He's had a few OHS he has a few Congenital Heart Defects, but one of them is pulmonary stenosis so has a pulmonary valve and conduit he also has a Bovine (perimount) pulmonary valve. Actually he didn't have a pulmonary valve until he was 17, because they wanted to wait until he was fullgrown too.
BTW if you are searching for info on different pulmonary valves, they use Aortic valve, they don't make pulmonary valve (except as far as I know the contegra conduit, that is a pulmonary valve made from a cows jugular vein). Most of the people I know that have their pulmonary valve replaced have Bovine valves and a few have human. As John said, tissue valve usually last longer in the pulmonary position than they do the Aortic. Since they don't do many pulmonary valve replacements, like Deb suggested I would ask the different surgeons how many they've done. Are both surgeons you're talking to Congenital Heart Defect / Adults w/ CHD Surgeons? I haven't heard anything about Dr. Max Mitchell, but googled and saw he is at Denver childrens, so he should have pulm experience (most people who need pulm valves replaced have CHD) I can't think of anyone off the top of my head that I know goes to Denver, or Albuquerque. Which hospital do you go to there and who is your surgeon there?

I'm curious, how did you pick those 2 centers? I was looking to see what hospitals in NM do CHD surgery and was surprised when I found a link to a Dr. Lagerstrom that said "New Mexico's Only Pediatric Heart Surgeon
Presbyterian Heart Group has the only pediatric heart surgeon in the state and is the only hospital in New Mexico performing congenital open heart procedures"
http://www.phs.org/PHS/childrens/pediatric/index.htm
Which made me think of another good question to ask, beside asking the surgeon how many Pulmonary valves he does, I would ask how many CHD surgeries the hospital does each year. IMO, the experience the rest of the staff, and ICU has is almost as important as the surgeon, since many of the "bumps" happen when you are out of the OR and in ICU or on the regular floor.

You might also want to join the forums at the Adults with CHD org http://achaheart.org/ Since quite a few of the members there also had pulmonary stenosis as part of their CHDs so have had 1 or more pulmonary valve replacements. I haven't been on their forums lately but there used to be a few people from the Denver Area, hopefully they can give you some thoughts about surgeons there.

Sorry this got long and rambly, I kept thinking of new things.

 

[vtbecca]

Hi Josh,

I'm a heart mom. My son Gabe is 9 and has had 2 pulmonary homografts put in. The first was actually an aortic valve/conduit put in the pulmonary location. That was done at 2 weeks and only lasted 17 months. He had a lot of calcification and narrowing. The doctors guess it was calcification, tons of scar tissue, and a low level of rejection. I was nervous getting another put in but they put in the pulmonary conduit at 17 months and he's still got the same one, over 8 years later. When his has to be replaced much of that will be due to the fact that he was around 24 lbs when it was put in and has had so much growing, it just won't be able to keep up.

There are pros and cons to each type. If you feel very stronly about one type or another go with whichever surgeon does that type and is comfortable with that type. I know of an adult who had a pulmonary artery/conduit placed at 18 and it went until right around his 40th birthday. At that time they were able to put in a valve through catheter and it's working well. I know of a child who just had his first replacement at 14. Original valve was placed at birth. So they may not go as long as a mechanical but they certainly can last quite some time.

Welcome to the group, and good luck with your decision!

 

[tobagotwo]

The Biocor is a mixed grille valve. It has porcine leaflets and bovine pericardium where they join (at the commissures).

Pulmonary valves are different from aortic valves inthat they are not under as much pressure, and they tend not to calcify nearly as quickly as an aortic replacement.

Homografts (human valves) are the traditional replacements for pulmonary valves, either for just pulmonary replacement, or for pulmonary replacement in the Ross Proceedure, where the pulmonary valve is used to replace the aortic valve. They have an unpredicatble lifespan, which seems to be affected by how well they are cross-matched with the patient, including blood type. This seems particularly critical in women, and I have also read that it's important that a woman's homograft should come from another woman - although that's not important if the recipient is male. However, they tend to last well, probably averaging 15 years or more. They have one quirk that other valve types do not share: they create a rejection reaction. Interestingly, it has been established that the grafts that have earlier and stronger rejection generally fare better long-term than the ones that do not (meaning the rejection incident is not usually fatal to the graft). So having a rejection phase with a homograft may be an expected and positive (after it's over, anyway) part of the process for many pulmonary valve and Ross Procedure patients. http://www.bhj.org/journal/2002_4404_oct/org_res_632.htm

There is less history for xenografts (animal tissue valves) in the pulmonary position, but current beliefs are that they will last as well as homografts, due to the lesser pressure and calcification that occurs at the pulmonary valve. They perform substantially better in younger patients there than they do when used for an aortic placement. The use of bovine and porcine valves for pulmonary replacement is becoming more common now.

I couldn't say which is sctually better. It could go either way, depending on your chemistry.

Best wishes,

 

[mkotobi]

The pediatric cardiologist at UNM hospital that I have been following since I was about 5 recommended 3 hospitals for surgery (as he does not do surgery himself). Those hospitals are Denver, Chicago, and Stanford, as he is comfortable with both the surgeons and staff at these facilities. He stated his concern with Lagerstrom at Presbyterian in Albuquerque is that the staff does not get enough experience with the lower level of volume. I am happy to see that so many of your posts mentioned long-lasting tissue valves. I have pretty much narrowed it down to homograft vs xenograft. It seems that many of you have had (or know someone who had) homografts. I will be meeting with Dr. Max Mitchell in Denver later today. I will post my questions and his responses. Thanks again to everyone for your help!

 

[Lynlw]

The pediatric cardiologist at UNM hospital that I have been following since I was about 5 recommended 3 hospitals for surgery (as he does not do surgery himself). Those hospitals are Denver, Chicago, and Stanford, as he is comfortable with both the surgeons and staff at these facilities. He stated his concern with Lagerstrom at Presbyterian in Albuquerque is that the staff does not get enough experience with the lower level of volume. I am happy to see that so many of your posts mentioned long-lasting tissue valves. I have pretty much narrowed it down to homograft vs xenograft. It seems that many of you have had (or know someone who had) homografts. I will be meeting with Dr. Max Mitchell in Denver later today. I will post my questions and his responses. Thanks again to everyone for your help!

All 3 hospitals you named are in the top 20 for CHD centers If it helps deciding where to go here is the link to the US news top CHD centers http://health.usnews.com/best-hospitals/pediatric-rankings/heart-and-heart-surgery you can click on the different hospitals and see how they score in a few ways. One of the numbers I like with the Childrens list is the "Reputation with specialists" which In every specialty, 150 pediatric specialists randomly selected by RTI from a national database were asked to name the five best hospitals for children with serious or difficult problems in their specialty without considering location or expense for the last 3 years combined.
Will you have someone that will be with you for the surgery and post op?

I belong to a few Congenital Heart Defect groups, which most of the Pulmonary valves that need replaced are congenital. Most of the people, I personally know of online, that have gotten Pulmonary valves in the past 5-10 years have gotten Bovine but quite a few, usually people that got a pulmonary valve as part of the Ross Procedure, got Homografts. Since they already approved pulmonary valves that can be replaced by cath (the Melody) one of the questions I would ask is if any valves would be easier or harder to have replaced by cath when you need a new one. As Bob said there is not one type that is definately better for everyone. You can't go wrong with either choice, either should last about the same based on what is known right now.

 

[Country]

Josh,

i am 23 and i had/have bicuspid aortic disease. it is still wierd to think that i have been diagnosed, gone thru surgery, recovered, and went back to work all withen 5 months-may to october! i went mechanical with my aortic valve just because i know that will give me almost no chance of having surgery again. and that was most important to me.


i wish that i knew more about the pulmonary valve etc.
at least you have known that this day has been coming for some time and at least you have plenty of time to research and choose the right valve, docs and hospital!

but if you do have any questions about before or after heart surgery then feel free to ask. i would be glad to share!

 

[ALCapshaw2]

Lyn is possibly our most experienced CHD member.

I certainly concur with her suggestion that you ask every surgeon you interview about their experience doing Pulmonary Valve replacements (and with CHD patients).

I am a big believer in the saying: "The more they do, the better they get".

'AL'