Pulmonary stenosis post ross help??

[skimomck]

My 19 year old son had a Ross done 3 years ago. He had some degree of pulmonary stenosis after the first year but it had seemed to stablize. He just went to the cardiologist and the echo is showing severe stenosis They actually called it critical stenosis an echo gradient of 80-100. We have the cath scheduled for next week but he leaves for his second year of college in a month and we are in a panic wondering what will happen. We may have to make a very quick decision on a valve and we need some help. We never thought we would be doing this. We had hoped the Ross would be a very long fix. Thanks for any help we can get. The other issue is that he has a mild bleeding disorder.

 

[Karlynn]

Welcome to VR. You have come to the right place.

I don't have an aortic valve issue, but I do have 2 children in college, so I can understand how all this is weighing into the mix for you.

With the Ross apparently not lasting, I would go mechanical this time. The younger you are, the shorter amount of time a tissue valve lasts and I don't think your son would benefit from continued repeat surgeries.

However, I don't know what your son's bleeding issue is, so I don't know how Coumadin would effect that. But we have a wonderful warfarin (Coumadin) expert as a member here who would hopefully be able to help you out with any information regarding that issue. His name is Al Lodwick and he has his own site www.warfarinfo.com but he also checks in here regularly.

Encourage your son to join us as well, if he has any questions. Although having had his Ross 3 years ago, I'm sure it's all very fresh in his mind. But the best part of VR is the fact that we are a large group of people who have 'been there, done that'.

 

[Bryan B]

I had my Ross done in March and so far so good. There was another poster (surfsparky I think) who has been having a similar issue with his pulmonary valve at (I think) about 1 year after surgery. I'm sorry to hear that the pulmonary valve is deteriorating so quickly. Af for replacement valves, I'm not sure if they can or do use mechanical valves for the pulmonary valve. I think since it's under much lower pressure than the aortic and other valves, tissue valves seem to last a long time in the pulmonary position (the pulmonary valve doesn't pump the blood, it's basically a "flow regulator"). I would do some research on the internet and also discuss this with his surgeon. I hope everything turns out ok for your son!

 

[tobagotwo]

This must be very hard on you, and may be devastating for him. I wish you wisdom to help him and yourselves through this time, and strength to do it.

Some people get a mild rejection phenomenon with the human tissue used (homograft). In this case, it was enough to damage the homograft valve significantly. One has to wonder if sorting homograft tissue by blood type would help, as they don't do that at this time.

However, bovine and porcine tissue don't cause that reaction. As the pulmonary position is under much less pressure, a tissue valve should outlast its normal (aortic) expectations. In any event, the valve used would be an aortic valve, as the aortic and pulmonary are structurally the same. As such, all options are still open, although I would want to avoid another homograft (human valve) for him, as his body fights it.

The decision as to valve type should be his, as he has to live with the result, and is apparently over 18. He should look through the Coumadin forum, including archives, and see if he is ready to make the kinds of changes in his life that it would require.

A hard choice, at his tender age. As much as I might want to, if it were my son, I would struggle not to take that away from him, as he might well come to resent it someday. Hobson's choice. I wish things were easier for you all.

Best wishes,

 

[skimomck]

Thanks for the great advice. I have never gave much thought to what Bob said about Teddy making the decision, but it is a good one. It should be his to make, he is 19.5 years old. The life style changes is the tough one and will be very difficult for him if he goes the route of a valve requiring Coumadin. He is an avid skier(freestyler), sailor, biker, climber etc.

 

[bvdr]

Welcome to this forum. We are always so glad to have new members.

I have read that in certain situations pulmonary valves have been removed and no valve is implanted in it's place. I don't know what effect that has on everyday living or in what circumstances it is done but I found that interesting. I hope everything goes well for your son no matter which method of treatment he chooses.

 

[Johnny Stephens]

The life style changes is the tough one and will be very difficult for him if he goes the route of a valve requiring Coumadin. He is an avid skier(freestyler), sailor, biker, climber etc.

Don't assume he would have to give these up entirely - he will just have to be aware of the risks he's taking on by continuing to do them. It may only involve dialing back a little bit on the "extreme" end if he really pushes it to the edge of injury.

 

[Bryan B]

Cindy,

You don't have to answer this if you don't want to (or if you aren't sure of the answer), but since I have a Ross too I am curious about some recent changes they have made to the procedure and am wondering if your son had the procedure before or after the changes and which type of homograft pulmonary valve he received.

I have read that up until a few years ago they were placing homograft AORTIC valves in the pulmonary position when they did the RP. I think they did this because most homograft valves being harvesting were for AV replacements and were therefore more readily available. I believe that the reason they stopped doing this and started placing homograft PULMONARY valves in the pulmonary position was due to higher than expected early failure of homograft aortic valves that were used in the pulmonary position. I was just curious if your son's surgeon had mentioned what he thinks the cause for the stenosis may be from.

 

[vlamus]

It's been awhile since I have visited, but I would like to add my thoughts on the PV. I have a congential heart defect called Tetralogy of Fallot, and the PV gives us lots of problems (amongst other issues). When I was born, my PV was stenotic. At age of 7, they basically did a valvulotomy to open up the valve... kind of a slice and dice. No replacement valve. Over the years this cut open valve became basically non-functional and there was essentially free-flow back and forth. Yes, you can live like this for a while (unlike the aortic valve). Of course, over time not having a PV will cause strain on the right side of the heart. That was my problem. Over a year ago I had my non-functioning valve replaced with a porcine valve in the pulmonary position up at Mayo. I know there are some people that have bovine, homografts as well as mechanical valves placed in this position. My understanding is that tissue valves do very well in this position, since it is "low flow". But also, because of the low flow the mechanicals may tend to clot. At least that is what I have been told.
It is sure disheartening to hear of a PV becoming stenotic so soon after replacement. I was told my porcine can last upto 15-25years.
I wish all the best to your son. As an adult with a congenital heart defect I sure understand the impact on one's life to have to face, yet again, more heart surgery.

Vlamus

 

[tobagotwo]

A couple of things to consider:

For what comfort it may bring, a pulmonary replacement is not usually considered as dire as an aortic or mitral replacement.

Also, a large study on reoperation concludes that second valve surgeries ("revalving") have a 25% lower mortality rate than first ones.

Having said that, please realize that we all realize that OHS is OHS, regardless. It is a big deal, any time surgeons visit there. Scary and traumatic. The points are made to comfort you in some small way, not to trivialize the surgery in any manner.

Your son is probably too active to go without a pulmonary valve, although BVDR's post does bring up that it is not usually as critical a part of the picture as the other valves, if it leaks. Unfortunately, if the problem is stenosis, it does become critical. And while I think it is great that you are trying to give the decision to him, you are still the one who can help him to understand his situation and the information that he needs, so he can make clear choices.

Bryan's right about the high failure rate of aortic homografts in the pulmonary position. I've read it, too, and it's hard at first to understand why, as the valve should have it easier. However, that must be the very thing that makes it work less well - apparently, the valve "sets" to work in high pressure, and when it doesn't have that pressure, it encounters problems.

Which makes me realize that my prior posting is unclear about that - when I was referring to the fact that it would be an aortic valve, I meant that an animal tissue valve used in the pulmonary position would be a standard aortic replacement valve, as they don't make a distinction between that and the pulmonary when making them as far as I have seen on the company sites. The homograft is a different issue, as Bryan pointed out.

If there is still concern about that issue, the bovine type is manufactured from bovine pericardial tissue, rather than being a natural, "used" valve, which the porcine is, so it would have no "bent" to be either aortic or pulmonary. I am not aware of that issue in other than the homograft, though.

Another thought is that one has to wonder about Coumadin use for your son, depending on what the mild bleeding disorder is. That should be run by the doctor. His choices may be limited by that.

Again, I wish your family strength to get you through this trying time. It is difficult to go through such a harrowing experience, begin to believe that you are past it, and be thrown back into its teeth again so cruelly soon. My heart goes out to you.

Best wishes,

 

[skimomck]

Pulmomary Stenosis Post Ross

Pulmomary Stenosis Post Ross

First of all, the advice and ideas everyone is throwing out is wonderful and so comforting to know you have a place to get info from people who have been there and have lots of experiences. For the first time since we found out the news,Teddy sat and read the posting which was a great way to start preparing for the possible desicion we will need to make and to educate him on the options. A rather interesting side note is that Teddy is going into plastics engineering in hopes work in the ski or snowboard or boating industry, but this summer got hired by a company that does injection molding for Medtronics and he made parts for open heart surgery and he loved it.

I think going valveless probably isn't an option but I know it is done at times. As far as what type of homograft Teddy received- i do not know if it was pulmonary or aortic valve but statistically most of the other who received the same type have done extremely well, in fact I think the homograft failure is less than 5%. It was engineered and he was suppose to grow his cells on it to avoid what did happen. Another side note is that Teddy had a bad car acccident when he was nine and had extensive injuries and we found out at that time that he is a major keloider. He had problems with the donor site of a skin graft which is unusual and every scar is a major issue (and he had many many) including the scar from his original heart surgery which looked fine for a month or two. We are wondering if the keloid process had anything to do with his rejection of his homograft.

When he saw the postings about changing his lifestyle slightly for coumadin his first reaction was that he is not willing, that he would rather risk re-surgery but he needed it all layed out and would consider it all. He is a very bright kid and will look at it closely and consider all the info out there, but none the less a very tough position to be in.

 

[Karlynn]

Cindy,
This is such a tough spot for a young man to be in. They are mature enough to take the decision seriously, but still at that age of invincibility when it's much tougher to see into the future.

If he is a heavy keloider, he really does need to think long and hard about repeat surgeries and how they will affect the way the heart functions. At almost 20, he could be looking to, at the very least, 3 more surgeries for tissue valves (if he continued to replace with a tissue valve.)

My son has a fraternity brother who has a mechanical valve. I will ask him about what type of activities he does. Apparently he doesn't limit his activities to the point of anyone knowing he has a mechanical valve. The only reason my son found out was that he was in the laundry room with the young man and heard the clicking and asked him if it was a mechanical valve. The guy was surprised my son recognized the sound.

Extreme sports is a reason a lot of people choose tissue, but it sure sounds like there are a lot of things in the mix.

Hang in there Cindy!!!

 

[surfsparky]

Sorry to hear all you (and Teddy) are going through

Sorry to hear all you (and Teddy) are going through

Hi Cindy,
I am currently going through some of the same things as your son Teddy (but not quite at the point that he is at just now). I had the Ross Procedure 15 months ago and at my 6 month check, an echo revealed pulmonary stenosis. They expected it to stabilise but it didn't, and at the 9 months the stenosis had increased. At one year post op, the echo showed that the the pressures seemed to have not worsened, but my surgeon is not happy with my pressure gradients, as they are the highest he has seen in any of his patients post op. It seems highly likely that the homograft will need to be replaced, but I'm hoping to have a little more time off from having surgery again. I thought (and the surgeon did too), that surgery was going to happen this year, but now that the pressures have leveled it seems that we have a little more time up our sleeves! In my case, it seems to be an issue of the "rejection" phenomenon, and we too, have been investigating whether keloid carriing is related to the "rejection". I too, have a number of keloid scars, and it seems that this condition is now being tested as to it's effect on OHS. My suregon said that if/when I need to have the homograft replaced, and if we choose another homograft (mechanical valves are not an option as yet here in Australia), we may try to match with my own blood type. It is not known for sure if this would make a difference, but I think he'll try anything to stop from tarnishing his great record! (The treatment process though, when they treat the donor valves before they use them is supposed to "strip" it of its original origin).
What symptoms is Teddy currently experiencing?
By the way, I'm 32 years old and a keen surfer (not that I'm allowed to surf at the moment though!), so I understand Teddy's feelings about to maintain this active lifetstyle. My surgeon has banned my surfing for a few months which at times is a little frustrating (but it does give me lots of time with my beautiful family).
I feel for you as a parent, because even the thought of my little boy Noah going through this is hard...and I feel for Teddy, it's pretty scary facing OHS surgery another time, particularly when there is no clear cut answer or fix.
My thoughts and prayers are with you both,
Chris

 

[Shine_on_Syd]

My Ross procedure was aborted when the surgeon went to remove my pulmonic valve it was so bad he couldn't use it. He sewed it back up and told me it looked like it went through a "meat grinder". Ended up with a porcine AVR.
He could have replaced the pulmonary valve with a homograft while he had my heart open, but basically he said I should be fine with shot pulmonic valve. My cardio said it is leaking and it would be rare that they would ever replace a pulmonic or tricuspid valve.

 

[skimomck]

Chris,
Thanks for your story. There are certainly lots of similarities between your story and Teddy's. Unfortunately yours happened a little faster than Teddy's and for that I am sorry. Your lifestlyes also have a similar active style that doesn't lend themselves to enjoying sitting on a couch. They are certainly concluding that Teddy's is also due to a rejection type of reaction possibly related to his keloiding. Most of those who have the same type of valve as Teddy ( Synograft de-cellurized) are doing very well. Do you know how high your pressures are?? Teddy's pressure gradients went up to around 50 since 11 months post-op but then stabilized and now his gradients is between 80-100. His surgery was 3.5 years ago. We met with the cardiologist this morning and he is having a cath with valvoplasty on Wednesday. There hope is it is not too calcified so they are able to open it up enough to lower the gradient and allow him to go to college and then plan a valve replacement possibly next summer.

Well sorry you aren't surfing. Teddy will tell you how painful that can be, not doing what you love. For him that is skiing. Take care and thanks again.
Cindy

 

[Bryan B]

Hi Cindy and Chris,

I saw my surgeon today and asked him about possible rejection issues with the homograft. This isn't verbatim, but he said that the body doesn't actually reject the valve in the literal sense (like an organ transplant). He said that for some reason in a small number of people their pulmonary arteries start to narrow which causes the homograft pulmonary valve to become stenotic. I asked him why they don't use mechanical valves in the pulmonary position, and it is because of the low velocity of blood flowing through the valve and a much higher likelihood of clotting. He said that if I were to develop the same problem that Teddy or Chris are experiencing and it became necessary to replace the valve he would put in a prosthetic valve (i.e. tissue valve). Please don't take this as medical advice, but I thought I would try to pass along this information as a concerned fellow "Rosser".

I will be thinking of Teddy on Wednesday and will be sending {{{good vibes}}} his way. BTW, my surgeon knows Dr. Elkins and seemed to hold him in the highest regards (my impression).

 

[skimomck]

Thanks for the good wishes. Everyone here is quite calm and at peace and we all feel Teddy is good hands tomorrow and we hope for the best outcome possible. We also hold Dr. Elkins in high regard but unfortunately he has retired, but is still following his previous Ross patients. He has arranged for the cardiologist to call him after Teddy's cath. We are happy to be in are own town and surrounded by our family and friends which made flying to Oklahoma difficult. I will post the outcome in several days because if they are able to balloon Teddy will stay over until Thursday. Thanks again.
Cindy

 

[mjd414]

Chris and Teddy.......best of luck tomorrow...I will be thinking of you both and hoping that the outcome is positive...Be well!

Mark
Ft. Lauderdale
AVR 7/14/04

 

[skimomck]

The cath is done, Teddy stayed in Peds ICU overnight and was discharged this afternoon. The procedure went well and was without any complications. They were basically unable to do the valvoplasty because the stenosis is not in the valve leaflets but the narrowing is from scaring where the homograft was stitched and connected. They tried to balloon it with very minimal success. The opening was 11.7mm before the balloon and 12.2mm after. His homograft that was put in originally was 24mm. But since it was an artery they manipulated and he has a bleeding problem they wanted to moniter him overnight. At this point we are a little frustrated because we don't have any idea what the plan is and with just three weeks until Teddy is to leave for college, so time is limited. They told us they will turn it over to the cardiologist we saw two weeks ago (not our regular one) who is on vacation right now and she will talk to us when she returns the end of next week. They also said they had no appointments available until after he is suppose to leave. Teddy says this is all very simple. If he can go back to school with no activity limitations, great. Otherwise he wants it fixed now and he will miss the fisrt term so he can go back in January and do his thing. From what I have just learned on the internet this is the most common problem with the homografts at this stage post-op. They can become calcified which is what they thought had accured but that doesn't happen this quickly. I will continue to keep you posted, but for now I know very little.
Cindy

 

[Bryan B]

Cindy,

I'm sorry they couldn't do more for Teddy. Your explanation is what my surgeon explained to me and what I tried to explain to you with my "lay" knowledge. And it always seems like the physician you need to see most urgently is never available at the time. This happened multiple times to me before my surgery and it caused a lot of friction with my employers. My unsolicited opinion...I would let Teddy make the final call if it comes down to the scenario you described. Wishing you the best possible outcome!