Aortic Valve Replacement for 26yr old

[dannyboy]

Hello,
I’m 26 years old and I recently found out that I require surgery to have my aortic valve replaced due to aortic insufficiency.  So, I have a few quick questions:
1) Are there any new procedures available or soon to be available that will provide the reliability of a mechanical valve without the increased likelihood of clotting that is associated with mechanical valves?  I would like to avoid being on blood-thinners for the rest of my life, but I also do not want to have to go back for surgery 10 years down the road (as I am told is commonly needed with organic (pig, cadaver, ect.)  valves).
2) I will be getting a second opinion shortly, but there are a few things that I don’t understand:
a) I have only 40% of the blood contained in the heart exiting the aorta every beat and I was told
that 70-75% is normal.  If I have only a little more than half of normal amount of blood leaving the heart, how is it that I have no symptoms and I’m able to maintain an active lifestyle (running, working out, etc.)?  
b) How can my BP be in the normal range 138/70 if only 57% of the normal amount of blood is
leaving my heart and my pulse rate is only 56 beats/min?  It seems like with less blood flowing
there would be a decrease in BP.  Is my body compensating is some way?
3) I’ve been reading about minimally evasive aortic valve replacement on your site.  I was wondering what is the recovery time for this procedure?  Which procedure (traditional or minimally evasive) is safest (i.e. less likely to have complications during & after surgery)?  Are there any disadvantages to the minimally evasive procedure, provided the surgeon is experienced?
4) Should I find a surgeon that specializes in younger patients so that he or she is thinking long term solutions?  I’m concerned about using a surgeon whose patients are typically 70+yrs old because they might not have the right point of view regarding care of younger patients (i.e. quality of life over the next 50+yrs, ensuring that the solution will last for many (50+) years to come, etc.).
5) I know that Cleaveland Clinic provides the best cardiac care in the country, so I was wondering if you could recommend a specific surgeon at the clinic that specializes in aortic valve replacement in younger patients?  Can you also recommend one in the southeast (I’m located in FL)?
6) I’m 6’4” tall and weigh 220 lbs.  I’ve been reading about Marfan Syndrome symptoms and I do share some of the traits listed as symptoms.  So, I am wondering if there is a specific test that can be run to determine if I do in fact have this condition?  I’m curious because it sounds like if I do have this condition, it may have an impact on the aortic valve replacement.  Is this correct?  

Thank you for your help in this difficult time.
Dannyboy

[CCF-M.D.-CRC]

Dear danny,

Here is some general information about valve surgery.  You are asking some good questions but the most important is your choice of a surgeon.  Once you have selected a surgeon the rest of the questions should fall into place.  

There are two main options for aortic valve replacement: mechanical and tissue.  Examples of mechanical valves are St.Jude, Star-Edwards and Medtronic-Hall.  The advantage of the mechanical valve is its long life (usually longer than the person receiving it).  The disadvantage is the need for life-long coumadin. There are no long term complications from taking coumadin other than the bleeding risks.  I would recommend Dr. Lytle here for mechanical aortic valve surgery.

Tissue valves are made from pig or cow hearts and last about 5- 10 years.  The main advantage is not having to take coumadin.  Aortic homografts are tissue valves from cadavers and also do not require anticoagulation and may last longer than other types of tissue valves.  No one really knows how long but it is probably more than 10 - 15 years.  The chief disadvantage of the homograft is availability.   Dr. Magdi Yacob from England has done quite a bit of work in this area.

The Ross procedure transplants the patients own pulmonic valve to the aortic position and places a tissue valve in the pulmonic position.  We are currently doing a few Ross procedures here but they are not as popular as they once were.  Dr. Petterson is the surgeon doing them here.  

A new procedure being attempted in some centers is reconstruction of the aortic root and valve but this technique has not yet been validated and is not widely used.  

Here are some articles for further reading that should answer the rest of your questions.  Your local medical library should be able to help you find these.

Deciding what valve is best.
Birkmeyer NJ. Birkmeyer JD. Tosteson AN. Grunkemeier GL. Marrin CA. O'Connor GT. Prosthetic valve type for patients undergoing aortic valve replacement: a decision analysis. Annals of Thoracic Surgery. 70(6):1946-52, 2000 Dec.

Minimally invasive surgery.
Estrera AL. Reardon MJ. Current approaches to minimally invasive aortic valve surgery. [Review] [20 refs] Current Opinion in Cardiology. 15(2):91-5, 2000 Mar.

Ross procedure.
Sirvydis V. Sudikiene R. Lebetkevicius V. Ross operation--immediate and mid-term results. Cardiovascular Surgery. 8(7):555-60, 2000 Dec.


Valve reconstruction
El Khoury GA. Underwood MJ. Glineur D. Derouck D. Dion RA. Reconstruction of the ascending aorta and aortic root: experience in 45 consecutive patients. Annals of Thoracic Surgery. 70(4):1246-50, 2000 Oct.

[garyr]

There is a new Synergraft valve that is being tested that may last longer then 25 years in younger patients.

There are clinical trials going on with several others, including the Synergraft from Cryovalve in Georgia.

Here's a website listing most prosthetic valves.New Heart Valve Might Grow with Patients


http://members.evansville.net/ict/        

Click on "Image gallery":


WASHINGTON (Reuters) - Corporate researchers said on Tuesday they had developed an artificial heart valve that they think will grow and change with the patient -- even a child.

The team at Atlanta-based Cryolife Inc. said their valve is made of pig collagen, but becomes virtually the patient's own as their cells grow in and around it.

The company has applied for approval from the US Food and Drug Administration (FDA) to test the valve in people.

An estimated 78,000 people get replacement heart valves in the United States each year, according to the American Heart Association.

Valves, which control the flow of blood through the heart, are sometimes damaged by infections.

The SynerGraft valve starts out as a normal pig heart valve. Chemicals are used to strip all the cells away -- cells that could cause rejection, or that could carry disease -- and the collagen structure that remains would be implanted into the patient's heart.

Tests in sheep show that the recipient's cells then grow in and on the collagen structure, and start building new collagen.

``It becomes the patient's own valve,'' Roy Vogeltanz, vice president for corporate communications for Cryolife, said in a telephone interview.

Cryolife's Dr. Steven Goldstein explained that the patient's own cells would allow the valve to withstand the wear and tear of daily use. ``It's remodeling itself,'' he said.

Goldstein said pig valves are now routinely used in human patients, but they wear out, become calcified or are rejected by the immune system. They then must be replaced, which requires a major operation.

The company hopes its product will do none of these things, and that the technology will be used for other body parts, such as knees.

Goldstein said the valves seemed to have grown along with the hearts of young sheep in which they were tested. ``The valves remained competent. They weren't leaking. We suppose the valves actually increased in size,'' he said.

And, Goldstein said, the valves were working well in six human patients in Australia.

Pigs are known to carry viruses known as porcine endogenous retroviruses. These viruses are incorporated into the genome -- the genetic material -- of the pigs, cannot be eliminated, and can infect human tissue.

Some scientists worry that transplants from pigs will cause infections in people, but Goldstein said the company has found no evidence that pig collagen, which is not made up of cells and which does not carry genes, carried the viruses.

``We actually get rid of the nucleic acid,'' he said, referring to the basic material of genes.

He said the company was also testing its process with human heart valves, but said human tissue is always limited because so few people arrange to donate their organs after death.

``That prompted us to look at the porcine xenograft because we know that is in unlimited supply,'' Goldstein said.

Many other companies make heart valves. Also on Tuesday, Medtronic said it had won FDA approval for its Mosaic heart valve, another pig valve product.


There's another site, "valvereplacement.com" you may get some response from as well.

Any questions please feel free to e-mail me:

***@****

[Steve in Florida]

I will be getting a SynerGraft aortic valve (CryoValve-SG from CryoLife) implanted on 5/16. If it works as it is hoped, it may last my lifetime if there are no other complications. Otherwise, my surgeon believes it will function at least as well and as long as regular homografts. For me, it is worth risking another operation down the road for the chance to avoid the risks and inconveniences associated with taking Coumadin the rest of my life. That's a personal decision everyone has to make in the choice of valves, particularly between mechanical and tissue. I'll keep this site posted on how the SynerGraft valve works for me, but the jury may still be out for a decade or two! Good luck.

[Vanessa Naicker]

Hi Danny
My partner had his aortic and mitral valves replaced in March last year.  He was 30 years old at the time and had the same concerns as you, especially on the age issue.  His sole reason for going the mechanical route was that he does not want to ever do this op again. We live in S.Africa and were fortunate that his surgeon had spent some time at the Cleveland Hospital so was abreast with the lastest heart surgery advances.  Despite this, minimal invasive surgery was not recommended since this was a double valve replacement and we went the traditional route. Fortunately the cardiothoraic surgeon is much younger than most surgeons in his field and this definitely helped in addressing our concerns and making us feel more comfortable. It is critical that you have a surgeon who you feel comfortable with. Its been a year+ since the op and the only hiccup to date was atrial fib some 6 months after the op which was controlled by medication. The daily Waffarin is a must but you can live with it and there doesn't seem to be any major side effects.  You do have to monitor your PI regularly though. Also don't forget that mechanical valves do tick.

All the very best with you op. I must add that the SynerGraft valve sounds very promising.
Good Luck!
Regards
Vanessa

[Kev]

Danny,
I had my first aortic valve replacement 11 years ago at 23 years of age.

At the time, I opted for a homeograft, which was performed by Dr. Donald Ross who happened to be doing a handful of procedures at my local hospital.  The doctor's expectations were that it would last up to 15 years or more. I liked the idea because I too didn't want to worry about the side effects or concerns inherent in using blood thinners.  Being so young and active, I didn't want to freak out everytime I did something that could cut me.

Unfortunately, I'm currently scheduled for a June 20th second surgery to replace it.  It didn't meet the doctor's expectations - but for me the decade of excellent health I received felt like a gift.

I have considered both the mechanical and stentless valves for my upcoming surgery and still feel the additional surgery is worth the 10 years of having a normal active life.  I just can't see myself going to the doctor to get the dosage checked regularly or worrying about travelling overseas or listening to that thing inside me chest clicking away.

For some people, it is probably worth the inconvenience not to go through surgery again, but I have to tell you that the way I've been able to live my life in the past decade made it worthwhile to me.

Even though there is higher risk with the second operation, I am going with the stentless valve in hopes that new more long-term procedures will become available next time I'm up.

Everyone has different personal opinions on this and you should choose what feels right for you.  

For me, additional surgery concentrates the pain into a few weeks.  In my opinion, living a life dependent on drugs that limit an active lifestyle stretches the pain out over a lifetime.

Good luck with whatever you choose to do.  
Kev

[Susan8]

Im 25, and can relate to your problem quite a lot.  My aortic valve and heart both ruptured last June, and I had to under go open heart surgery for repair.  Before my surgery they were fairly certain that my valve had to be replaced and I was offered homapathy, which is were you receive another persons valve.  I was told that if I had this that would mean I didnt have to undergo anymore surgery on my valve, and that I wouldn't have to take medication to thin my blood.  Has this been discussed with you??  Also they mentioned they could swap the valves around as the aortic valve is the one that does more work.

I also only had 1 third of my blood passing around my body when this happened, and although I didn't feel that much different where excersise was concerned, I and everyone else could see my whole body beating like mad. My blood pressure was also fairly normal to, but was told that this was because it only measures the pressure of the blood not the blood content itself.
Your question regarding the surgeon, I had a paediatric heart surgeon present aswell as the surgeon I was under, as my surgeon said it was very rare he operated on young people, so maybe you could ask him about that.  I had my heart surgery in August last year, and am a lot better now.  I was also fitted with a pacemaker.  If you have any questions that I can help you with you can email me on my friends computer (I dont have one) the address is ***@****.  I would be delighted to help with any queries you have on the surgery, and afterwards.  I was just like you with a list of questions, and I have learnt a lot, so I know I can be of assistance to you.  Wishing you well, and don't worry you will be fine. Just like I am now.

[Brooks]

Hi Danny, I am an 29 yr old male with very similar circumstances. I'm very active (work out,run,all sports.) My cardiologist says I don't need surgery yet but I think it will be soon because I seem to becoming symptomatic. Right now my symptoms are light-headedness and slight dizziness after activity and mild palpitations when I lay down and throughout the day. If you are not symptomatic what criteria did your cardiologist use to recommend surgery. I was going to put together a post for the fine doctors here, but your post covered everything I was looking for. My email is brooks.***@****, I'd like to keep in touch and swap information if possible.

[DE]

I'm a 50 year old male just diagnoised with Aortic valve narrowing. I can do most everthing except go up hills as fast as my wife!!  Feel tired in the middle of my chest. Two months ago I X countried skied 12 miles with no real problems. When I complained to my doc about not being able to build up my wind he listened to my heart a I had a loud new murmmer.. Echo  test says I need a new valve. At 50 I am leaning towards a permanent fix a mech valve.  What valve has the best track record ovverall for long term survivle... mech   or tissue???

****

[NBCT]

Try the website Valve Replacement.com for answers from others who are anticipating surgery or already had a valve replaced. Good Luck and Take Care.