ross procedure

[richie rich]

Hi everyone.

I am new to this board. I need some helpful comments, suggestions and advice.

I was diagnosed with moderate to severe aortic reguratation in August of 1999. It was a fluke that they caught it ( xray of my chest lead to a echo which spotted the condition ). I was told at the time that it wasn't that bad and that no heart damage was apparent. Due to my age ( 29 years ) I was told to monitor it yearly. The following year it was fine, then I skipped a year. Long and behold when I went to the cardio's office in October it was discovered that why left ventricle had grown 20% in the two years since my last echo. I have another appointment next week to verify the previous echo readings. Cardio has told me that if the last reading was accurate then it would be his opinion to peform the surgery and replace the valve.

Now here is my problem. What do I do? I am a male, aged 32 years young. I prefer not to go on coumdin for life. I also would like to avaoid as many surgeries as possible. At my age I could be seeing 3-4 surgeries in my life with a pig or cow valve. Thebn their is the Ross Procedure. My cardio thinks I would be a good candiate for the Ross.

I am looking for imput for the following:

1. Anyone who has HAD the Ross Procedure. What was the recovery time? Any side effects? Any regrets? Any problems? Would you do it again? Any good websites on the pros and cons of the Ross.

2. Anyone who has had the mechanical valve. Recovery time? Side effects? Any regrets? Looking back would you have done the Ross or used a pig or cow valve? The coumdin factor. What are the side effects and the hassles. What is the home kit?

3. Anyone who has had the pig or cow valve and received it at a very young age ( before 40 ). How many times have you replaced it. Looking back do you wish that you used a mechanical?

I appreciate anyone and everyones imput and opinions. I have two young kids at home and I want to be around when their children have grandchildren.

Thanks,
Rich

 

[Mara]

Welcome Rich! You have come to the right place.

Since I had the Ross Procedure I can give you my experiences, but, remember everyone is different, and as they say on t.v., your results may vary.

I was diagnosed with aortic stenosis ar about age 4, so I had known for a long time that surgery was in the offing.
I had the RP at age 33, 5 days after my wedding.

No regrets. I am doing great and have never felt better. For the year prior to my surgery I knew I was very fatigued, more so than I wanted to admit.

I have had no complications and feel very fortunate. I am on no medications. My recovery time post-op was about 6 weeks until I felt like me again. It actually takes about a year for your body to completely recover from any open heart surgery. So, this past summer when I had my one-year post-op check both my cardiologist and the surgeon were extremely happy with the outcome of the surgery. "Scarily normal" was what the cardio said about my echo and ekg.

The Ross is not for everyone, but I chose it for the same reasons that you gave. I did not want a lifetime on Coumadin. For me, the prospect of a re-operation vs Coumadin was not hard. I figure by the time I need a second operation, if I do, the technology for valves will be ages ahead of where it is now.

I have had no side effects except increased energy and the ability to do what ever I want with the excpetion of heavy muscle training, i.e. bodybuilding, but I am not interested in that. I can actually play all the sports I was not allowed to play while a kid, soccer, basketball, etc. No restrictions.

There are many good websites out there about the Ross Procedure check out www.myrossprocedure.com and associated listserve, and lots of info on the web about the surgery. Do a search on WebMD. Or go on Google and do a search for Ross Procedure. I found tons of medical journal articles on it.
The cons that I discovered were that the surgery is long (mine was 7 hours) and very technically demanding on the surgeon. If you have any connective tissue diseases like Marfan's Syndrome the Ross is not for you. A typical mechanical valve replacement takes about 3 hours. The most important thing in the RP is to get an excellent surgeon who has done this operation many times before. You don't want some newbie. (See the archives under "surgeon questions" and "making the choice")

The pros are that you are getting your own valve in the aortic position and the replacement in the pulmonic is under low pressure and usually does ok, plus no anti-coagulation.
Now, there are lots of folks on here who chose mechanicals and love them and would not go back.

The choice of valve is very personal and no one except your physician can really help you choose. We can only give our experiences. I say that you can't go wrong with any valve you choose. The choice is up to you and you will probably be happy with any one of them. Complications and problems can arise with any valve replacement and I don't think that they are more prevailant in one type of surgery over another. I don't think you can fairly ask the mechanical folks if they would have gotten a tissue valve instead. Many had no choice and the mechanical was their only option. You are lucky that you have options. Some folks on here did not get a choice.

Plus, the whole thing is really not as scary as it seems to you right now. Don't worry you will be around for a long time and have years with your grandkids. This is not that bad. There are thousands of people who have survived and thrived after valve replacement. Just think of all those old slobby guys who smoked cigarettes and ate fried foods for 40 years who cruise through coronary artery by-pass, and you're young and healthy.

-Mara

 

[JimL]

Hi, Richie, welcome. Your three conditions for response should include just about everyone at this site.
I didn't have a choice in the matter. My surgeon said a mechanical valve. I asked one weak question about alternatives, and he said they weren't for me.
Learn all you can, and then do what you cardiologist and surgeon say. They are, after all, the professionals.
I'm on coumadin for life, which is no big deal at all. I heal up as fast as I ever did, and I'm clutsy enough to cut myself often. I'm currently researching donating blood, which is, I think, the one thing I can't do any more.
I've had the normal side effects connected with heart surgery, such as an irregular heartbeat, but that has become regular.
I recently had a one-year check-up with the cardiologist, and he was impressed. He said things like full recovery, don't come back for a year.
Mara says it only took six weeks "until I felt like me again." There is a gradual process of recovery, and a lot depends on how symptomatic you are before surgery. If you definitely need the surgery, sooner is definitely better. I was approaching the outer limit, with perhaps only week(s) to live before surgery. It has taken a while to build up any reserve energy. But you shouldn't have that problem is the surgery is done in a timely fashion.
I was doing most of a full work load weeks after surgery. I've been running up flights of stairs, I participated in a walk for life at 4 mph, I'm considering running to see how long it takes to get tired -- things I couldn't have done before surgery. One continuing difficulty I've had is that after coming off the treadmill, many people walk so very slow...

 

[sylviayasgur]

hi rich!
welcome to this wonderful site. as you can already see, we don't waste time responding.
my husband, as did mara, also had a ross procedure (rp). he is now a year and two months post op and feeling stronger than before. joey was also born with a bicuspid aortic valve and we have always known that the surgery was imminent.
he was 49 at the time of the surgery.

joey's recovery seemed to take a little longer than we expected. maybe it's because he is/ was so fit that we thought he'd be up and about in no time. i'm not sure, but it took him a longer time than we had hoped; he was in a lot of pain for quite some time. (nothing tylenol 3 didn't help though). at about 6 months he finally felt an improvement. since then he has gotten progressively stronger.

sometimes it seems so hard to believe that he actually went through this, he seems so "normal".

joey runs several times a week (up to about 4 miles or so) and bikes and plays tennis. he is now able to lift weights and do push ups, which he could never do before due to his stenosis and insufficiency.
we have since gone on a multi-sport trip (biking, hiking, kayaking, rafting, mountain biking) and he has out-biked and kiked me (and i'm fit)!!
since his surgery, his previously enlarged heart has gone back down in size. and, although they thought they might have spotted a leak at his 6 month checkup, a tee showed that it is what is known as a fistula and is a nonthreatening and trivial leak.

unlike mara, joey takes several meds. four days post op he went into afib (very common) and the meds he had previously taken to prevent him from going into afib (he'd had a few episodes pre surgery) did not work. he was put on amiodarone, which has been a blessing. he is now in the midst of weaning himself off the amiodarone.
he was also put on coumadin for a few weeks after surgery _ just precautionarily_ but no longer takes it. the only heart related meds joey actually takes are the amiodarone, folt-x (for homocysteine levels), and a baby aspirin. (he takes synthroid for thyroid).

on the flipside, my dad had a st.jude's mechanical valve put in almost 4 yrs ago and is on coumadin for life. he is in chronic afib and has no problem with it. he is a big golfer and still runs from time to time (he's a young 69) and travels a lot.
the folks who take coumadin will tell you that it is really not a big deal. i think it's those who don't take it who seem more intimidated by the thought of taking it.

as mara mentioned, although complications can arise with any of these valves, they are all lifesavers. in the end, you truly cannot go wrong with whichever one you choose. great advice to discuss with your cardio and your famioy and see what you think may work best for you. also, find the surgeon.
joey and i met with several surgeons to see what they felt/liked/used, etc.
this also helped in our decision making.

please let us know what you decide to do. come back and visit and ask questions, even call if you need to chat with any of us_ we're happy to give out our emails and phone numbers.
what city/town/state do you live in? where would you have the surgery done?

wishing you all the best.
stay well, sylvia

 

[pegne]

Ross Procedure

Ross Procedure

Rich, Hi I'm a 41 year old woman who underwent the Ross procedure in 1995. Mine failed. This procedure has a tendancy to fail. In 1999 I had another heart surgery to repair the damage that the Ross Procedure did. I'm doing great now but it was a long haul. Research this procedure. My feelings "now" are that I don't understand why anyone would risk damaging another valve. That's what happened to me. Not only did I have to have my aortic valve replaced again but also my pulminary. I hope you weigh the odds and look at the statistics. I wish you the best of luck and I will put you on my prayer list. Pegne

 

[Christina]

Hi Rich,

I was 53 when I had my Aortic valve replaced with a mechanical. My doctor made the decision for me because of my age. I also never wanted to have that sort of surgery again. Little did I know though that 11 days after surgery I developed a blood clot underneath the new valve and the surgery needed to be redone. Not much fun! So remember, surgery is not without risks, and anything can happen. But most of us do just fine!
I am now more than 2 years post-op and I am feeling great. I didn't get the renewed energy I was promised but overall I am doing fine. It took me quite a while to feel better, maybe it was because I had two AVR's within such a short time. Also I have a keloid scar and that was quite painful the first year. Overall it takes about a year to fully recuperate.
Am I happy with the machanical valve? Yes, it saved my life! Coumadin is not a problem once it is stabilized. You must find a doctor who specializes in monitering Coumadin patients and knows his stuff otherwise he and the nurses can drive you up a wall. Been there, done that!
I have been Protiming (hometester) since Janauary 2001 and have not seen the inside of a lab since then. I love it and this is freedom to me. I am going to visit my family in The Netherlands in three weeks and I don't have to worry to find a lab to check my INR. This to me is wonderful!
After surgery if you want one, call QAS: 1-800-298-4515 and ask for Lance or Brian. They can also help you obtain coverage from your insurance company.
I am taking quite a bit of Coumadin (20-22mg a day) but everyone is different, and no one knows how one specific person metabolizes vitamin K or Coumadin. Coumadin seemed to have a side effect for me the first few months. My hair started falling out but after a few months it subsided and I've been fine since then. Still plenty left.

Hope I have helped you.

If anymore questions,
please e-mail me at:[email protected]

Christina
AVR's 8/7/00 & 8/18/00
Tucson Medical Center, Tucson. AZ
Dr. Gulshan Sethi, surgeon
Dr. Lou Lancero, cardiologist
St. Jude's Mechanical

 

[John Cochran]

Rich,
Let me make this even more confusing for you by throwing another alternative into the mix of options! I have (as do some others here) a tissue-engineered homograft (from a human donor) which is designed to be repopulated with cells from your own body. This valve is processed by Cryolife, and is referred to as the aortic SynerGraft homograft. The benefits are much like the Ross Procedure, but with only one valve involved. However, this is new technology, and it has therefore not benefitted from the test of time yet. While new, it is not experimental and the valve in surgically implanted just like a regular homograft. The theory is that, because the valve has had the donor's cells removed, it will have virtually no rejection by your body, increasing its life dramatically. Second, because your own cells will (theoretically and verified on explants) repopulate this valve, making it your own living tissue. There is a possibility, yet to be proved, that this is a lifetime solution.

The only places I know of that are implanting this valve are the Mayo Clinic (Rochester, MN) and Oklahoma. However, I have heard that the Cleveland Heart Foundation clinic is also a possibility. The surgeon at Mayo who implants these valves also performs the Ross Procedure; he is Dr. Kenton Zehr, and has done surgery on a handful of us here. My own surgery was done in Minneapolis by a Mayo-trained surgeon who has implanted over 1000 aortic valves. I picked him (Dr. Michael King) because he could get access to the SynerGraft valve and implant it with a minimally invasive procedure.

I do need to tell you I had a disaster occur during my surgery, with valve tissue tearing, and they had to use the backup valve. Fortunately, it all worked out just fine and I am now doing great--no blood thinners, only a baby aspirin every day, and physically I can do pretty much anything I want.

If you'd like more info about the SynerGraft option (which can also be used in the pulmonary position if you have a Ross) feel free to e-mail me.

Good luck!
--John

 

[richie rich]

thank you all for your responses. i spoke with my cardio yesterday and he informed me that i have to do a cardio cather. this week. he feels that i will need to have the surgery within the next month. perfect timing. all i want for xmas is to be in a hospital. i was hoping to have the surgery in mid February after my family gets back from Disney. fat chance now.

anyway i live in east northport, new york which is in long island. does anyone have an opinion good or bad about any surgeons in the NY area. i checked the RP registered and found 5 surgeons in the Ny area. Dr. Damus, Dr. Graver, and Dr. Vatsia in Long Island and Dr. Quaegebeurer and Dr. Stelzer in NYC. anyones imput into these surgeons would be very helpful.

i'll keep you posted on my progress to the operating table.

rich

 

[EVELYN]

Hi Richie

Welcome to this site. We're from Aquebogue, on the east end, and went into St. Francis for my husband's surgery this past June. Tyce had AVR and had the "long" opening, to say the least, performed by Dr. James Taylor. We queried him about the minimally invasive procedure as we did our cardio....both of them said the same thing....They have had problems with the minimally invasive and IF something goes wrong during the surgery, they want to be able to get into the heart quickly to fix whatever it is.

SOOOOO, we went with the AVR replacement with the mechanical valve. Tyce went into St Francis on a Wednesday for the surgery and was home on Sunday. We can't say enough good things about St. Francis staff--they definitely know their stuff. The only bad thing is the parking, it stinks! There was an article a few weeks ago in Newsday that rated Drs and hospitals, and St. Francis and Dr. Taylor were mentioned...perhaps you can look it up through newsday.com.

My best friend works for a corporation that does medical mal practice for self insured hospitals, so I asked her to check out Dr. Taylor et al....her words were..."EVERYONE IN HIS GROUP IS EXCELLENT!" She knows who to use and who NOT to use.

Six months later, absolutely NO regrets. Coumadin is NOT a big issue in our lives. We have a Protime home monitor and check levels routinely. We fax results into our cardio and if there's an increase or decrease in meds, they call us and tell us how to adjust or Tyce eats more or less greens, or some V8. We're both very glad Tyce went with the mechanical, as the prospect of replacement valves and additional surgery in 15 or so years was NOT anything he was looking forward to.

Dr. Taylor's number is 516 627-2173 if you're interested. I would recommend both him and St. Francis unequovically.

Hope that helps. Feel free to ask any questions, this is a wonderful site.

Evelyn

 

[Nancy]

Hi Richie-

Getting a new heart and regaining your health for the holidays is the very best gift you can get!

So Happy Holidays and enjoy!

 

[sylviayasgur]

hi rich!
i'm sorry they caught you off guard by telling you to have the surgery sooner than later. maybe getting it over with will be good though. start the new year fresh and "new".

my father had his avr and double bypass done by paul damus at st. francis hospital (a great hospital, by the way)about 3 yrs ago. he has a st. judes' and takes coumadin and is fine with it all and feels great_thank God! (he is turning a young 70 this year)

my husband, joey, had his ross procedure done a year and about 2 months ago at beth israel (south) in NYC by paul stelzer.
we absolutley loved him! i cannot recommend him highly enough.
he is personable, has a wonderful bedside manner, is extremely talented at what he does (this from a former co-worker of his, also a surgeon), and is just an all around nice guy. i would definitley recommend meeting with him for a consultation.

dr. quaggebeurre at columbia presbyterian does many ross procedures, but primarily in children. that is why we opted not to meet with him.

if you have any questions, please email me at [email protected].
i will be happy to give you my phone number if you wanted to chat about this too.
wishing you all the best of luck. this is a tough decision. why not meet with some of these docs? (by the way, we did not meet with paul damus, because unless they think you are planning on using him, he won't even meet with you_ also, he doesn't do that many ross procedures).

please let us know what you decide to do.
stay well, sylvia