Ross/artificial valve

[RobThatsMe]

Hi Richard,

I did not have the Ross Procedure, however there are several on the site that have had it, and I think they can provide you with more detail information concerned your question. I hope they can help you out on this one and provide you with the information that will set your course and provide some provide some peace of mind to you. I do not think that the pills you are taking will stop the leak, only minimize the effects and help prevent further damage. Maybe your doctor is trying to allow your body more time to heal before having to face another surgery.

Wishing you good health,

Rob

 

[Jean]

JAY TWO

JAY TWO

OK Somewhere in our midst is a young man who last spring or summer had valve surgery and chose a very new procedure where a homograft is "cleansed" or some such process leaving a basic framework for the persons own cells to fill in and eventually take over the whole form.

I am wondering how this is going and what the ramifications might be for a 15 year old. I know that bios are not lasting for young people, but wouldn't it possibly be a go for this new form?

Just thought I'd bring this up and maybe somebody with a better memory than mine might know who or what this was...seems to me it was a surgery in Texas.

Hopefully...Jean

 

[RobThatsMe]

Hi Jean,

If my memory is correct, I believe it was Steve in Florida that had that type of valve. Hope someone else on the site can verify.

Also, Richard... Click onto the "Personal Stories" when you first enter the site. There are 4 people there that are listed with the Ross Procedure. You could try writing to them for further information.

Regards,

Rob

 

[sylviayasgur]

jacob,
i don't think i mentioned there is a great thread on either "small" or "heart" talk entitled "making the choice. you might get some helpful info there. let us know what you decide, please.

richard,
other rp's on this site are mara, ben smith, my husband joey, lancashirelad, and i think one other whose story is in personal stories. joey just had his rp done 7 1/2 weeks ago. when they did his post op echo, they found that there was some slight leakage, but no more than a mechanical valve would have. they were very pleased and not concerned at all.
have they said what they suspect may have caused the leakage? is it the pulmonary in the aortic position or the homograft that's leaking?
i agree with robthat'sme, i don't think that the medication they gave you is for the leak. if i'm not mistaken, that can only be fixed through surgery. the meds probably keep your heart from working too hard and thereby enlarging.
how bad is the leakage? are you showing symptoms of tiredness, etc?
i hope you are ok. hopefully the other rp's will be more helpful than i was able to be.
please keep us up to date.
be well, sylvia

 

[Kevin M]

I think you are referring to the CryoLife synergraft valve where the patient repopulates the valve with their own cells.

From their website, CryoLife says:

"The technology incorporates the use of a porcine pulmonary heart valve that has been depopulated of its porcine cells, leaving a collagen matrix that has the potential to repopulate with the recipient's own cells, providing a bioengineered human heart valve with structure and biodynamics similar to the recipient's own heart valve. It is anticipated that the tissue-engineered valve will have the capability to grow with the maturing of a child, thus potentially avoiding a series of heart valve replacement procedures. "

Steve In Florida and Peter Easton were ruthless in their research exploring this alternative, so either of them would be a great resource to you.

There is always risk with any tissue valve in that it could burn out early in young people. Their rate of calcification is far higher than that of the elderly and that's part of the reason they don't like to put stented tissue valves in young patients. The stentless valves or the bovine are felt to be better. The homograft also calcifies rapidly with youth, as I can attest from my first procedure.

My surgeon says he thinks my shiny new stentless tissue valve will last 25 years. That sounds great, but the last guy said my homograft would last at least that long and it starting acting up after 10 years. Considering that was Donald Ross, I tend to be a bit cynical about any of their predictions.

There is always risk that new advancements will not perform as expected, but the upshot is that sometimes they do. Even if the CryoLife Synergraft valve does burn out quicker than hoped, you can take comfort in the fact that at the very least, it will last as long as a more typical tissue valve. Forgive me if it sounds like I'm selling here, I do not mean to be. I only mean that any new advancement, if proven safe, will at the very least meet the minimum expectations. I think the same about the new drug therapies that are on the horizon to replace coumadin. But everyone is different in their weighing of risks and how they wish to live their lives.

In my personal case, I still second guess whether or not I should've gone with a mechanical valve this last time around. I hope one day I'll be more comfortable with my decision to go stentless. I comfort myself in enjoying my current excellent state of health and try not to think about it too much.

It's a tough choice, but whichever you choose, you will not pick wrong because you will still enjoy your life and marvel at how they can do such magic on the human body.

I guess I'm a bit philosophical today.
Kev

 

[bruizer]

Hi,
I had the Ross Procedure performed in December, 2000 by a world class surgeon who is recognized as one of the top surgeon's in the world and had performed over 150 Ross Procedures. He was also the surgeon Arnold Schwartzeneggar selected for his surgery. I have always been a very athletic and active running 4 miles a day and never had any symptoms leading up to my surgery. At any rate, my new aortic valve began leaking 4 months after my surgery. One of the leaflets had prolasped. My surgeon said in his experience, leakage so soon after having the Ross Procedure was very low (only 3 times). He said that there was a chance he could repair it. I now have an echo every few months to make sure my left ventricle is not enlarging. I was advised to do this by another world renowned surgeon who performed the first successfull heart lung transplant. I feel great, run 3 miles a day easily, and have no symptoms. My ejection fraction is really good, around 65. I will have my next echo in a few weeks and make a decision when to have surgery based on the results. I never expected to be facing a "redo" this soon after my first surgery. Given the information I had, I feel like I made the right decision going with the Ross Procedure (it was even recommended by my surgeon). There are many people (i.e. Mara) who have had this procedure and are doing very well. Unfortunately, regardless of what valve you select, there are no guarantees. I have had heard a few surgeons who are not big on the Ross. They say moving a valve which was in a low stress position to a high stress position can cause the newly transplanted valve to fail. However, from what I have been able to determine thru research, the success rate is very high.
Good Luck and God Bless.

 

[sylviayasgur]

hi bruizer and kevin! (and jacob)
first of all, i'm sorry to hear of your leaky valve, bruizer. glad you are doing so well though. my husband, joey, was dr. stelzer's 304th ross! number 304!!! he's now 8 weeks post op and so far so good. had a treadmill test and did well, but he's still uncomfortable running.

mara not only had a rp, she has a cryolife synergraft in her pulmonary position!!! our surgeon (stelzer) said that his "buddy" (i forget his name) at the cleveland clinic who does even more rp's than he does is using this routinely and is totally sold on it (cryolife synergraft)! dr. stelzer is a bit more conservative and wanted to go with the tried and true valve.

did you guys know that the surgeon who did arnold schwarzenegger's rp spoke to dr. stelzer the day after arnold's surgery when his aortic valve started leaking and needed replacement?? i guess that's why they don't publicize the fact that he had a rp.

i agree with the notion that there is no right or wrong valve. somehow the valve you end up with becomes the right valve. problems can arise with any type of valve. i think it's what you are personally comfortable with.
think about it , ask questions, whatever it takes.... mull it over with the family......
it will all be right in the end.
God bless you all, sylvia

 

[Sam Scholz]

I too fast valve replacement at an early age, 16. Having suffered from Ruematic fever (twice) in my earlier youth, I was faced with having an aortic, and or mitral valve replacement. The option put upon me was for a procine valve. I had no other options, valve surgery was relatively new then, 1975. I had the surgery done, and was up and about playing soccer 30 days later. (Yeah I know kinda nuts.) the porcine valve lasted til I was 24. This valve got me through college, and college soccer, and all those other college activities, i.e. fun. The second valve was to be a mecanical, and I wanted no part of it. I had a teflon coated Aortic inserted and my mitral was deemed fine. My new surgeon said I was set for a long time, even though my previous surgeon was a real "hack" as he said it, I would be fine. That porcine valve lasted 18 years and went out with a bang, my surgeon who installed the previous valve was still doing surgeries and told me in that I would be getting a mechanical, aortice and mitral. I figured I'd had a good run, now time to settle down. Well they popped in a St. Judes about 2 years ago and it is clicking away fine. I don't play soccer any more, but I coach it. My surgeon said I was set for life. Maybe if I was a sheep if I told him. But I feel very good and am happy with my choices. But through all of this I always opted for the newer technique or experimental as with my second valve. You will be doing this again, so try some new the first time, you might do all right. I have asked my cardiologist, about that "fourth" time and he assures me it won't be a problem. Granted he will be retired by then. But good luck,

Sam

Aortic valve replacement, with a mitral ring. 2/2/2000

 

[Gail in Ca]

Hi,
I had a porcine valve done and it lasted 11 years.
I am glad that I had this option because at least I was coumadin free and able to do any sport and not worry about bruising and lasting problems.
Now I have mechanical and am taking coumadin.
It's okay, I had no other choice, and I am content at 47 not to ski again!
It's true that you must be ready for other valves than the one you might want. When the surgeon gets in there things may change. It's also so important to have a well qualified surgeon that exudes confidence. I saw the tape of my surgery and there is so much sewing involved. I didn't know that surgeons also could be taylors!!
Gail

 

[JayTwo]

Progress update!

Progress update!

To any who are interested, thought we should give a little progress update. We are continuing forward on a process of trying to pick a heart valve! Those of you who have warned us that this can be a little unnerving...you're right!! We thought we were narrowing in on St. Jude, now we seem to be narrowing in on Ross. We have talked to four or five doctors and surgeons with different opinions, as well as support people, looked around this site and others. We have been told that, while they'd like to know a few days in advance, we can tell them in the waiting room before going into surgery. Talk about leaving our options open until the last minute! I hope we don't do that All three of us are very involved in this. We feel that whatever we pick it will be a win over Jacob's present situation, with more energy and stamina. The surgery is scheduled for Tuesday December fourth, less than two weeks away. The notes we have received on this thread have HELPED us with this process!! Thanksgiving is tomorrow...thanks for giving us your input. We are also thankful to have several good options and the time to think them over, and the prospect of Jake feeling better soon. We will let you know how this goes once we pin it down....assuming we will...we have to eventually!
Have a great Thanksgiving, all!
Tom and Tracy, Jacob's parents

 

[sylviayasgur]

hi tom, tracy and jacob!
happy thanksgiving! i'm glad you've consulted with several surgeons. i think that makes the choice easier and harder. my husband, joey and i felt that the more info we had the better. BUT... it also makes it harder to have all those choices.
glad to hear a date is set. now the wait... that's the worst part, but i suspect you'll fill that time trying to come to a decision about a valve. please remember, you cannot make the wrong choice. all choices are lifesaving and are the right choices. from what i've read, even those who end up with the valves they had originally not wanted, end up comfortable with the valve they were given.
have a happy and healthy holiday and we are here for you, anytime.
be well and God bless,
sylvia

 

[Mara]

Wow! you guys put a lot of info in here while I have been out there in the netherworlds. Thanks for the "plugs" Sylvia.

Jay2: Jake, mom and dad-
I have to agree with a lot of what has been said here already. The RP was the way to go for me. I think in young people it is especially good because of the longer period between possible reoperations.

I do have the CyroValve SG as my new pulmonic valve and it works great. I have had no troubles. A bit of tachycardia after I came off the Toprol a few weeks back, but that was expected. Other than that, I feel great. I am walking several miles a week, cycling, not sleeping all afternoon, and looking to join a women's over-25's indoor soccer league! Ha! When I was 15 the doc would have said "No way!"

The RP, as you know, is technically demanding. So get a surgeon who knows his stuff. Now, I can't say that you need to have a guy who's done 300 RP's, my guy had done 55 when he did mine. But, all 56 RP's had great outcomes! So, there is something to say about the technology that is out there now.
Nevertheless, you what a competent and skilled surgeon. My guy had done over 400 AVR's.

You already know that this is the hardest part. The surgery is a sinch because you sleep through that, the recovery is sore, but by 4 weeks you are feeling very well.

Good Luck!
and welcome
-Mara

 

[JayTwo]

Big decision made today

Big decision made today

After hours on line and hours talking to various doctors and lots and lots of discussion amongst Jacob and his Dad and his Mom about the pros and cons and factors and ups and downs and ins and outs, Jacob decided today, three days out from surgery, that he wants to get the Ross procedure. All three of us are settled about that decision. He and his Dad called the doctor's office and told the receptionist the decision. He said, "this is Jacob, I'd like a Ross procedure, and can I get a lube and oil with that valve job?"

If anyone can help advise us on a detail here....everyone keeps talking about how you need a pillow to hold onto for when you cough. This may seem like a silly question but....what kind of pillow is good? Just a regular bed pillow? A body pillow? A couch pillow? An extra-firm one? Or does it not matter? I may want to go out and buy one ahead of time so we're ready for when we bring him home.

Any advice from the experts?

 

[Christina]

Hi JayTwo,

They will have special pillows at the hospital, so don't go out and buy one. I received several "heart" pillows to hang on to when I had to cough or when one of those evil sneezes would occur, so watch out for those. They hurt when they catch you by surprise. The pillow really helps, so hang on tight.

Christina

 

[tnboomer1013]

Hi Jake

Hi Jake

I am responding to you Jake because in the end it is you that has to live with the decision. I have read your last post that you have made that decision. I can only tell you what happened to me. As I stated in my bio I was born with aortic valve disease. I was very active played baseball from the age of 5 till 35. Surfed hiked all the things that a child growing up in Ca. would do. At the age of 44 I had a very intense pain on the left side of my chest that literally put me on the ground. Well I saw a cardio as soon as I could. Found out that my valve was finally caput along with not having a artery on the left side of my heart. I needed surgery or else. I opted for the ross because of what I do. I do heavy industrial construction that requires extensive travel sometimes out of the country. I choose the ross because of my job and I really didn't want to quit being active. But because of what they found after they opened me up I now have an eternal ticking in my chest and the coumidin I take every night. I know I made the right decision on the ross but I also know I made another right decision by having a backup plan.
So stick with the ross but please have a backup plan just in case. You really don't want your surgeon stopping in the middle of the procedure if for some reason he can't do the ross and asking what do you want to do now. With the ross you have a chance of failure down the road, but you don't have the worry that goes along with the blood thinner. I am on the thinner, I hate the biweekly visits to the lab, but I refuse to let it change my life style. Another thing about the ross be sure you research you surgeon. Because there is a learning curve with this procedure. You want one that has done a number of these.
Good luck to you Jake. I know that you will do fine. Our thoughts and prayers will be with you and your family.


P.S. Stay away from the green jell-o.

GO UT.

 

[Mara]

Pillows

Pillows

Hi Jake-
I did not get a pillow from the hospital. I used on of those "pet pillows" It looks like a rabbit. You have seen them they are good for kids to hug and lie on the floor with. How ever, since you are a guy you might not want to carry around an animal pilow. It worked well because it was easy to hug, and just the right firmness.
You will also need lots of pillows to sleep with when you get home. This is when a body pillow would be nice. I sort of made a "pillow nest." It is hard to get comfortable the first 2 weeks post-op. You back willbe sore from trying to sleep sitting up. If you have a recliner at home sleep in that!

Beware the dreaded sneeze! you will hate it! Also coughing is rough.

Get some popsicles, those are good for when you feel yuky and don't want to eat. Jake, now is your big chance to be waited on hand and foot, so go for it! You will do great!

The weirdest part is when they pull your pacemaker wires and the subclavian lines. Feels very strange.


Good Luck.
Mara

 

[JayTwo]

Hi

Hi

Hi boomer thanks for the advice thank you all for the advice and ideas they have been helpful I go in tuesday. Thanks Mara and Christiana for writing and Kevin and sylvia and robthatsme and Jean and rain and everybody who ever wrote.

 

[hensylee]

Dear Jake - well here you are on the threshhold of the mountain - we are walking along with you, holding your hand til you get right on over the top and join us. My prayers and many many more are with you. Your mom will be here as quickly as she can after the surgery as we will anxiously wait to hear. Hug that pillow, little one - it will be your extra arm for awhile so take it everywhere - even to the bathroom. Get your buddies to sign it. It will be so much easier once you get through the surgery. Actually you have probably been through the worst part - the waiting can be excruciating. You will soon be on your way back to good health. Godspeed

 

[sylviayasgur]

hi jacob, tom and tracy!
so glad you've made your choice of valve/procedure. didn't that give you a sense of relief (once that decision was made)?
your big day is around the corner.... as others have advised, just have a back up plan, incase of anything. you might want to ask your surgeon what he recommends.
my husband joey never got a pillow from the hospital, so we took a "camping" pillow (small and pretty sturdy) along with us. any pillow will do though. holding it against your chest when you cough will ease the pain, jacob.
we will all be waiting to hear how it went, so, tom and/or tracy, if you or any other kids have a second, please let us know.
we will be thinking of you on dec.4th and praying for you. it will be behind you before you know it and you will be on your way to recovery.
God bless you all,
sylvia

 

[Elsiedog]

Jacob,

I had the Ross in March and I would agree with all when they say you should have a back up plan just in case, my surgeon told me beforehand there are a very few occasions when the make up of the heart just doesnt allow the procedure to take place.

The sneezes are bad but a small price to pay for what they are doing fo you.

Best of luck, you will be through it and revovering before you know it and wondering what all the fuss was about!

Hope to hear how you get on.