I can't believe it!

[dnksideways]

Good luck with any decision you make. I am a 32 year-old Ross Procedure patient who had surgery on 6/30/00. I'd have to say that as a relatively young athlete I can't imagine your dr. talking you out of the Ross. The first reason I had the Ross was the little guy in your picture. I though quality of life would be better with my kids if I didn't have to worry about the Coumadin. Second was my desire to keep playing basketball, football, etc. The link I have posted below is an article on recent 10-year results on the procedure. I think nearly 90% of patients not needing reoperation after 10 years is still pretty good. I don't know corresponding statistics for mechanical replacements.

Any reason to stay in the Dallas area for the surgery? I made the road trip from Birmingham, AL to Duke MC for mine as I thought my surgeon was the best at the procedure. The trip home wasn't fun but well worth it in hindsight.

keep us posted on your progress/decision.

ross procedure results (abstract)

 

[chilihead]

Thanks for the advice. My second cardiologist was Dr. John Warner from Duke. He's the one that advised against it. I think it is ok if you have the right surgeon. That being said, I'm afraid I don't trust many of these guys to do much more than a textbook operation. I've read enough that I think I could do my own mechanical valve replacement but the Ross is something more complicated. What is the estimate on the valve they used on your pulomonary side? How has your recovery been?

Best wishes and thanks again!

 

[dnksideways]

Certainly it is a more complicated surgery, but with the increased risk there is a commensurate reward in not having to worry about blood thinners or having to alter any of my athletic activities. My wife and I did extensive research into every surgeon in the US who had done more than 50 RP's. Of course I would heed the advice of your cardiologist over anything I could offer but I would definitely get several different opinions.

I don't know of an estimate on the cadaveric pulmonary. I pray that I happen to fall into the statistical group that doesn't need any surgery again.

My recovery thankfully went remarkable well. I was back at work after 3 weeks of being at home. I'll have to agree with a previous post (or maybe it was yours) about not being quite up to the athletic level I was at before the surgery. Probably something to do with getting older but I believe it was a little more than that. I can still hold my own, which is all I can ask for.

Here is a link to the site I used to find some of the surgeons I researched. Maybe you've been there already. myrossprocedure page

 

[joy]

Hi Jim, and welcome! I have a tissue valve because I didn't want to end upon coumadin, but it came back and bit me in the behind. I've learned alot since this happened though. Coumadin is not that bad, really. I take 4MG at bedtime and get my blood tested every other week. No big deal. I bruise a little easier, but not much. I wish I would have gone mechanical, and next time I definately will! There is no right valve for every one. It is a very personal choice. I would suggest that you talk to your surgeon and cardiologist about it, and see what they suggest. Good luck! Everyone here is so great! By the way, I am 25 and had my surgery when I was 23. Good luck!

 

[ddarsch]

Porcine Mitral Valve

Porcine Mitral Valve

Jim:

I was 34 when I had a tissue valve (porcine) - November 1991. It has treated me well as it is now 2003 - 12 years later. I was very active and remain so - climbing the Andes mountains after surgery.

However, the valve has started to leak and within a year I will have to have another valve. I am almost certain that I will do another non-mechanical valve.

What ever choice that you make - it is the correct choice.

 

[chilihead]

Thanks again for everyone's comments. After talking with Dan Herrington, I was inspired to ckeck out the Ross a bit more. I'm also studing the hemodynamic performance of the different St Jude's valves. If I go mechanical I want the "high performance" model.

I'm trying to get in to see another cardiologist ASAP.

I just got back from a mountin biking trip to Arkansas where we pushed it to the limit as far as exhaustion. Luckily no one was injured and we all lived to tell about it!

 

[bruizer]

Hi Jim,

I had the Ross Procedure performed on Dec. 27, 2000 by the same surgeon who performed Arnold Schartzenegger's. I was in great shape, running 4 miles a day, lifting weights 3 times a week, and playing tennis a few times a week up until the day before my surgery. I had no symptoms. My recovery went extremely well. I was running 3 miles a day 3 months after the surgery. Unfortunately, one of the leaflets on my new aortic valve started to prolapse 4 months after the surgery. I have another surgery scheduled for July 18 to replace the aortic valve again although I still have no symptoms and able to run 3 miles a day.

In hindsight, I feel the Ross Procedure was too risky. I have also had several other surgeons and cardiologists say the same thing. If I were in your shoes, I would strongly consider a mechanical valvle. I just met with Denis Conky, who is a member of this forum, yesterday evening who had a homograft implanted in Dec. 2002 and is facing a "re-do" in the next month. Initially, we both were totally against mechanical valves and coumadin since we are both very active. However, taking the more conservative approach at this point seems to make more sense. My cardiologists and internist both say coumadin is no big deal. It is also encouraging to hear how Nancy's husband Joe has been on coumadin for the last 25 years.

Good luck with your decision.

 

[Tom]

Hi Jim,

I would suggest getting a few different opinions. Doctors that perform a lot of mechanical valves favor them, and those who place mostly tissue valves favor them. I had a cryopreserved homograft aortic valve placed in 1999 at Mayo. I wanted to avoid coumadin as I am very active athletically. There is a well know cardiac surgeon close to you, Dr. Ron Elkins at the University of Oklahoma. He probably does more Ross procedures that anyone else in the USA, and also performs a lot of homografts. Also, Cryolife has come out with a new homograft, the Synergraft, that is supposed to last longer than the regular homograft. The donor cells are removed, leaving the collagen matrix that is repopulated with the patient's own cells. The last I heard, it is only available at University of Oklahoma and Mayo Clinic in Rochester.

Best of luck!

 

[nefarious_muse]

Jim: It looks like you are doing a good job of researching, so I'm sure that no matter what you decide, you'll be fine.

My husband's doctor told us that Arnold Schwarzenegger's Ross procedure failed (started leaking three days post op) and that they had to open him up again, and use another valve (I think he opted for porcine).

Our doctor explained that sometimes the "fit" can become an issue with the Ross procedure...so it's not uncommon for doctors to get into the OR and take a look at what's going on with the vessels before making the decision to go forward with the Ross procedure.

I've never have been able to confirm this (even looked on the internet) but it's what we were told

My husband's case was an emergency, so unfortunately we didn't have a lot of time to research. It all worked out in the end, however, as he really doesn't seem to mind the mechanical - or the medications.

In any event, good luck to you -
Nef

 

[chilihead]

Bruizer,

Thanks for the advice. I think If I were 25 and single, I'd go for a Ross. However, at 39 with a 3 year old and another child on the way, I should probably go conservative and get the mechanical. I just hate the fact that there isn't a mechaical model that doesn't require coumadin.

Next question, which mechanical model are you considering? Check out the St Judes' Regent model. It looks to have the best hemodynamic flow.

Regards,

Jim Johnson
Needing AVR in the next 6 months
[email protected]

 

[tnboomer1013]

Jim

Jim

I had avr in july of 2001. Originally had opted for the ross because of my life style. Basketball, baseball, running, hiking and what I do for a living. I am a boilermaker if that means anything to you. Travel constantly all over the world. They couldn't do the ross because my aorta was enlarged and the pulm. valve wasn't going to fit. So it was on to plan B and a mech. for me. Always remember to have a plan B before surgery and discuss with the doc what the plan is. Because when they get in there and plan A isn't viable it is not a good time to wake you up to find out what you want to do. If you do go with the ross do your homework, there is learning curve for these procedures, find one that has at least 50 if not a 100 under his belt. We have a say in our treatment so choose not to be open heart surgery 101. I have a carbomedics and boy is it loud. I know people here are going to say that after a while you can't even tell it is there. But sometimes it sounds like a bass drum. I really didn't want the mech. because of the coumadin thing, but it like someone has already said it is what you can put up with after the fact that counts. For me it was resurgery, I am out on that. Once was enough. So I have an eternal clock ticking in my chest. The coumadin is a pain though. I know some here will say that it is really no big deal but when you do what I do for a living it can really be a headache. Being on the road virtually all the time when I'm working, finding a clinic can be a challange. Because When I do go overseas that is out. I am not going to let someone in a third world country stick me. So I have to really watch what I eat and keep on top of my meds. Then there is the risk of getting hurt. In my line of work it is a constant threat. Something I have to be aware of all day long. It is not the getting hurt part but what happens after. I might be working an hour or more from the nearest hospital. You can do alot of bleeding in an hour. I do bruise very easily now, which if nothing else looks bad.

All that said, There is an upside. I am alive. I get to see my 11 year grow up. Play with the grand kids (some day). And being 46 now I have only 8 and 1/2 more years to go til I can spend my days a little less hectic.

Which ever way you decide to go it is a personal choice one that you will make based on what is right for you and your family.

Good luck and don't be afraid to ask questions. Knowledge is power.

 

[bruizer]

Hi Jim,

I haven't really discussed with my surgeon what type of mechanical valve he would implant, since his recommendation is a homograft. I just assumed that there was basically one kind of St. Jude mechanical. I asked with my cardiologist (who I happened to play high school football with) if a mechanical valve would restrict my level of exercise tolerance. He said that the size of the valve would be the determining factor and that a smaller valve would have less hemodynamic flow. Since I am very active in sports, this is definitely a concern so I am going to do some research and make another appointment with my surgeon. However, I still would be leaning towards a mechanical. Although the first surgery went extremely well and I actually was back at work in 12 days, I do not want to have a third surgery some day.

I definitely will look into the regent model. Thanks for the advice. Please keep me posted if you find out any other information.

Thanks,
Bruce

 

[ALCapshaw2]

Hey BOOMER,

You didn't mention having a Home Test Instrument for INR.

I hope that you are aware they are available (Protime, Coaguchek, and others) and you can TAKE THEM with you on your travels. Check out the QA Services link or the Protime Home Test Forum.

'AL'

 

[tnboomer1013]

hey Al

hey Al

Already tried that. No dice. My insurance won't cover it and I can't afford one on my own. Let alone the supplies.

 

[Randall Beckwith]

Valve Selection

Valve Selection

I had a aortic valve replacement (along with the aorta) in January 2002. I opted out of a tissue valve because I only wanted to go through the surgery once (I was 46 at the time). I considered the St. Jude valve, but my heart surgeon said they had a higher infection rate in the first 5 years after surgery because they have two valve cover openings and have dimensional edges where bacteria can snatch onto and grow. He recommended a Medtronic valve, which I ultimately selected. It is a little loud sometimes, but I am more active now than I ever was before (fear is a great motivator). I have a rowing machine and a treadmill and do an hour workout 5 to 6 days a week ? no problems. You might add it to your research list while you gather information for your decision. Good luck.

Randy

 

[chilihead]

Thanks. I'm still pondering the Ross procedure as well. I think the key is the surgeon and the condition of your Pulmonic valve that is used for the replacement. I'm also checking out how long the replacement valves for the pulmonary last.

Tough decision. I had lunch today with a coworker that had the St. Judes installed about three months ago. He seemed to be fine with it. I fell like the Ross is more of a gamble but might pay off in the long run. But, I'm not much of a gambler and generally lose especially in Vegas.

I appreciate all of the info from the folks on the forum.

Lately when I'm lying flat in bed, I feel a weird gurgling sensation. Once I get up and walk around it goes away. But, I'm still riding by bicycle a lot with no problem and just returned from a two week business trip to Germany. Fine beer!

Keep the posts coming. I'm off to ride my bike! It's a 100 degrees here in Texas.

 

[greggo32]

Maybe slow down a little until the surgery

Maybe slow down a little until the surgery

Dear Jim,

After reading the many intelligent responses that your thread generated, I will not offer any feedback about the surgery experience or valve choice. I do believe that you may want to ease up a bit until you have had your surgery and are well in the clear. I wish you the best and thought that I would offer the above comment as a concerned and future oriented person!!

Best of health to you and may your surgery go smoothly...

Truly,

 

[chilihead]

Greg,

Thanks for the advice. I was approached by my first cardiologist about possible repairing my aortice valve. I have heard that this generally doesn't last. I noticed you had experienced this and thought you might provide some insite.

We have another baby on the way in less than two weeks, so my options to slow down are limited. But, I hear what you're saying. I hope all is well with your new valve and that you are back to normal as much as possible. Any problems with the coumadin?

Take Care,

Jim

 

[Birky]

valve

valve

I have a St. Judes mitral valve which was put in on 2/27/03. Before the surgery, I was hoping for a repair and was told that there was a 90% chance that I could. After the surgeon got in there, they had to put in a mechanical. Coumadin really isn't an issue. I was on it for 7 years prior to the surgery and now again. I am 56 and very active.Work fulltime and love to have my grandkids around. Six of them. We have 3 six year olds and one 3 and 2 teenagers. I feel so good. Wish that this had been done sooner. Good luck to you,

 

[John S]

Re-surgery

Re-surgery

Marcia,

In July 1999 I had a mitral valve repair, and it didn't take. They went back in in November 1999 and replaced it. The first time the guy went through my sternum, but the next guy did a thoracotomy, and it was much easier to recover from. I used a different surgeon the second time around and I'm glad I did. The first surgeon has since been driven out of the business by malpractice. So anyway, maybe it's just as well your surgeon decided to go with the replacement.

We have one grandchild now, Max, 13 months old. He is so much fun and so cute! I can't imagine having six--must keep you busy.