Final decision

[Randy & Robyn]

Hi everyone,

After months of research, several phone conversations with surgeons, and two in-person consultations I have finally reached a decision that I believe is best for me.

I will be having surgery at Mayo with Dr. Kenton Zehr sometime this summer. No date is set yet because I need a bit more dental work and all the surgeons I have spoken with have told me I have several months before risking any permanent damage to my heart. But this is not something I will put off for long. I want it over.

Dr. Zehr gives me an 80% chance of being able to repair my regurgitant aortic valve with less than a 2% risk of failure per year and the potential for it to last a lifetime. He says my valve is unique in that it is partially biscuspid yet there is no calcification which bodes well for a repair.

My second choice will be the Carpentier-Edwards pericardial valve. He told me it would probably last 10 years but not to hold my breath for even 15 at my age of 36.

I was very surprised when he told me the risks of reop if my coronaries remain clear is no more than the first surgery, even considering the scar tissue. He told me my risk of complications is around 0.5%.

The third choice would be the St. Jude Regent.

I asked him how many surgeries I would be looking at in my lifetime if I stayed with tissue valves. He gave me a wide grin and said that after going through the experience of the first surgery I will be ready for a more permanent solution the next time around.

The only bad news was that he would prefer not to do a minimally invasive procedure because he would like full access. It would be my call but I will definitely go with his suggestion.

Regardless of what valve is used, he told me I should be able to go back to weightlifting, riding roller coasters and basically a normal life.

It was very refreshing to hear one of the leading surgeons in this field give me such an optimistic prognosis.

Randy

[Ross]

I asked him how many surgeries I would be looking at in my lifetime if I stayed with tissue valves. He gave me a wide grin and said that after going through the experience of the first surgery I will be ready for a more permanent solution the next time around.
Randy
Sounds like very solid WISE advice if you ask me!

Glad to hear you have it all hashed out. Part of the angst is now placed aside, on to the worst part, waiting. ;)

[RCB]

Sounds like your happy with your decision and you and your surgeon are on the same page of music. No matter which valve outcome you have, your in good hands and I know Mayo will take great care of you
I am hoping you get your repair :)

[Barry]

Actually, I can't figure out what the choice was. If I got it right, 80% chance that repair will work (meaning 20% chance of having to re-operate to replace it, I presume). Tissue valve with re-operation within 10-15 years. St Judes with presumedly no need for re-operation.

So did you opt for the St. Jude's?

That 80% chance of a repair and being done with it would be awfully tempting, though.

BTW, I've got a St. Jude's and I'm alive to tell the tale. Wish I didn't have the annoyance of Coumadin/Warfarin, but it's really little more than an annoyance and I'd be stuck with it anyway because of atrial fibrillation.

[Karlynn]

Well, part of your hurdle has been crossed. Wish I could say it is the hardest - but you haven't had the surgery yet. :) Seriously, I'm sure you're feeling some peace at having your surgery plan mapped out. Best wishes.

[Randy & Robyn]

Actually, I can't figure out what the choice was. If I got it right, 80% chance that repair will work (meaning 20% chance of having to re-operate to replace it, I presume). Tissue valve with re-operation within 10-15 years. St Judes with presumedly no need for re-operation.

So did you opt for the St. Jude's?


Sorry for not clarifying my situation, Barry. The choice I made was to try for the repair first. Every surgeon I have spoken with insists that would be the best outcome. Then, during the surgery, if Dr. Zehr feels the repair wouldn't last at least ten years, he will do a replacement with the pericardial tissue valve.

If, for some unknown reason, the tissue valve won't work with my anatomy, he would use the St. Jude Regent.

After meeting Dr. Zehr, I have the utmost confidence in his skills and feel I couldn't be in better hands. Have I found peace with my decision? Absolutely. Will I be calm as my surgery date approaches? NOT!!! I very much realize what a major procedure this is and the long, hard road to recovery I will be facing as well as the strong possiblity that, even with a successful repair, I will be doing it all over again someday.

Randy

[bvdr]

It sounds like you had a very productive consultation. I'm real pleased for you and truly hope you get a repair that lasts you for an entire real long life.

[BionicBob]

Randy,

You've done the research and sounds like you have top notch advice from the Mayo surgeon. Will pray that the repair will work beautifully for you, or the backup options if they come into the picture.

[Ross]

One thing is for certain, you've scoped out every angle and understand well what is going to happen. I only wish more people would do the same. Too many come in here terrified and with practically no clue what is about to happen to them. Please be sure you come back to help some newbies with your experience when it's over. ;)

[karlaosh]

Hello Randy and all you wonderful VR.commers.

I was so happy when I saw your post because I, too, am in the process of scheduling AVR with Kenton Zehr at Mayo. I'm looking at June 1st. (OMG)

I have only done a phone consultation with him so far, so I'm thrilled to hear someone say they've met him in the flesh and felt great confidence in him.

He says my bicuspid valve actually looks monocuspid and he doesn't think he'll be able to repair it. We haven't decided on which replacement valve to use, but it sounds like he's leaning towards mechanical.

I also have a lovely ascending aortic aneurysm that needs to be repaired. He thinks the aortic root isn't affected, but if the root looks at all iffy when he's in there, he'll replace that, too.

Dr. Zehr told me that my surgery isn't "technically demanding." I told him that locally, anyway, (in Fort Collins, Colorado) it IS technically demanding because relatively few are done each year. But I guess that's the brand of cockiness you want from your heart surgeon--the kind that emanates from scads of experience.

So maybe I'll see you in Rochester and we can compare notes. In the meantime, look for increased posting from me because the fight or flight instinct is kicking in and my instict IS TO RUN AWAY AND PRETEND I DON"T NEED THIS SURGERY AFTER ALL. :)

Please keep me posted and I'll do the same.

And thanks again to everyone on this amazing site. I can't tell you how much all the information and sage advice has helped me.

Karla

[tobagotwo]

Glad you have come to a decision you feel right with. It's a great relief to have that out of the way.

As far as the surgery, well, that's the next hurdle. You've chosen your surgeon, and you are confident that you wouldn't do better elsewhere. That is also a great relief.

You're human. You will suffer some trepidation.

What will help is to get yourself to the point where you accept internally that it's out of your hands. Once you stop feeling responsible for it, you can get some peace.

Took me until I was in the hospital to get there. Hope you find that Zen plateau faster than I did.

Best wishes,

[Les]

Randy,
The best to you.

[Phyllis]

Congratulations Randy and Robyn - you've done your homework and sound confident with your decision. We hope the repair works, but if not, you can moo or tick along with the rest of the forum. We wish you a successful surgery and look forward to hearing about all the good results! :)

[PapaHappyStar]

Dr. Zehr gives me an 80% chance of being able to repair my regurgitant aortic valve with less than a 2% risk of failure per year and the potential for it to last a lifetime. He says my valve is unique in that it is partially biscuspid yet there is no calcification which bodes well for a repair.



Randy, your options sound good -- i wonder what the doctor based his 2% number on -- if it remains constant throughout a lifetime you will have 34 years on the average ( 50% failure rate ) -- probably his own judgement based on his cases if he has enough of a series. For low statistics procedure like the Ross or repair for which individual surgeons success and re-op rates vary, it is reasonable to look at individual surgeons stats.

Good luck with your plans for surgery -- would enjoy having you if you'd like to visit for the Fermilab get together May 14...

Burair

[Randy & Robyn]

Just wanted to thank everyone for all of their support so far. I will be sure to let you know once the date is set.

And you can count on me sticking around after my recovery to help others through their ordeals with valve disease.

Randy

[Barry]

...I very much realize what a major procedure this is and the long, hard road to recovery I will be facing as well as the strong possiblity that, even with a successful repair, I will be doing it all over again someday.

Randy

I actually don't consider my OHS and recovering from it to have been that big of a deal.

For me it was mostly just a lot of intense but tolerable pain that you quickly forget. If we really remembered pain, every kid would be an only child.

As with many others around here, the anticipation was the hardest part, but even that was sort of interesting: I ended up in a hospital with congestive heart failure, awaiting a bed at the hospital where the surgery was to be done. Two weeks with little to do but think about the surgery and my mortality. What was interesting was that over the course of those two weeks, those thoughts became really boring. On the day of the surgery I had no real anxiety but instead just wanted to get it over with.

PS. Yep, that 80% possibility of successful repair is very inviting. Good luck!

[Randy & Robyn]

Although not everyone feels this way, OHS is a big deal in my opinion, even the first one. The second one, even more so for me. But I still would have to spring for an 80% chance of a successful repair. The payoff, if the procedure works, is so great that it's clearly worth the risk of reop.

I agree that the benefits of a repair are worth the risks. My dilemna was with my fallback option in case the repair doesn't work out. I would have liked the On-X mechanical valve because I believe aspirin therapy may be a possibility in the future. Unfortunately, the surgeon that I feel can give me the best chance of a good repair does not use it. So I chose a tissue valve and will go mechanical for a second surgery.

I trust my surgeon can bring me through two surgeries if need be. And if he can get me through the surgery, I can pull through the recovery. Being a bit of a daredevil, I have had my share of pain in my life. Four broken legs, two broken arms, dislocated shoulder, broken shoulder blade, broken nose, cracked ribs and several broken toes, a torn tricep and a ruptured quad tendon. I am also aware that none of these injuries compares to OHS. But they have given me patience and a high tolerance for pain which I hope will help some.

Randy

[tobagotwo]

Randy also answers to the nickname, "Lucky."

Sounds like you spent a quiet evening with the Hell's Angels. You're tough enough. You'll do for surgery.

Best wishes,

[Randy & Robyn]

Randy also answers to the nickname, "Lucky."

Sounds like you spent a quiet evening with the Hell's Angels. You're tough enough. You'll do for surgery.

Best wishes,


Thanks, Bob.

I only hope I haven't used up all nine of my lives yet. :D

[Ross]

Four broken legs, two broken arms, dislocated shoulder, broken shoulder blade, broken nose, cracked ribs and several broken toes, a torn tricep and a ruptured quad tendon. I am also aware that none of these injuries compares to OHS.
Randy
Glad you added the last sentence here. Randy I want you to go to the nearest landfill or mining facility and find one of those huge mammoth dump trucks. Take a hard look at it and compare yourself to it. It's what is going to hit you. ;)

Something like this--Be sure to wave at the driver as he runs you down!

http://img.photobucket.com/albums/v442/Ross/153-PP1283-1a.jpg

[perkicar]

Glad you added the last sentence here. Randy I want you to go to the nearest landfill or mining facility and find one of those huge mammoth dump trucks. Take a hard look at it and compare yourself to it. It's what is going to hit you. ;)

Something like this--Be sure to wave at the driver as he runs you down!

http://img.photobucket.com/albums/v442/Ross/153-PP1283-1a.jpg


LOL, and remember, we're going to be PAYING them for the experience of being run down!!!! :eek:

[Mary]

Ross,
I really could do without the visual aids. :eek:
Unless you're going to be with me as that truck approaches?

[tobagotwo]

With you?

Heck, we're bidding on who gets to drive it...

:D

[Mary]

With you?

Heck, we're bidding on who gets to drive it...
:D

Bobby,
As my dear departed mother would say, "You should be ashamed of yourself!" :(
But, I must say, it was a pretty good line! :)

[Ross]

Ah but that's only the one that nails you on your first surgery! For those of you awaiting your second surgery, this is what awaits you next:

http://img.photobucket.com/albums/v442/Ross/bomag_b.jpg

[Randy & Robyn]

Glad you added the last sentence here. Randy I want you to go to the nearest landfill or mining facility and find one of those huge mammoth dump trucks. Take a hard look at it and compare yourself to it. It's what is going to hit you. ;)

Something like this--Be sure to wave at the driver as he runs you down!



Judging by the size of that truck, I would say I might have a good idea of what surgery will feel like if I had suffered all of my aforementioned injuries SIMULTANEOUSLY!!! :eek:

[Randy & Robyn]

Me as a child:

http://www.magicedge.com/just_do_it.jpg

[Ross]

Honestly, I think we were all like that and some of us still are. :D

[perkicar]

Me as a child:

http://www.magicedge.com/just_do_it.jpg


yeah baby, that looks like fun. Except for that pesky rail just before the dock.......Maybe you could do some street luging???
;)

[Randy & Robyn]

yeah baby, that looks like fun. Except for that pesky rail just before the dock.......Maybe you could do some street luging???
;)

My attitude would have been, "I'll deal with that railing when I get there."

In retrospect, and considering the frequently disastrous outcome, I do believe that philosophy was somewhat flawed.

[skimomck]

Our son could be a relative of yours Randy. He has broken at least 10 bones (femur, ribs, mandible, skull, nose twice, tmj joint,etc, ruptured his spleen and had had multiple stitches. That could be him in the Just Do It picture. He had a street luge he made at one point in his life and generally if it looks dangerous he does it- he's a magnet to risky things. He is having his surgery at the Mayo also- on May 10th by Dr. Schaff. That is awesome they think they can repair your valve. Our son (age 20) had a Ross four years ago and it didn't hold up so he is going in for aortic and pulmonary valve replacements as well as an aortic root replacement. They want to use mechanical which is not what he wants. At this point he is choosing tissue valves which probably will not last very long they are predicting 4-5 years. I am sure you are relieved you have made the decision.
Cindy

[Randy & Robyn]

Our son could be a relative of yours Randy.


Cindy,

Perhaps someday your son and I can meet at one of the vr.com reunions and swap daredevil stories.

Sorry to hear about his misfortune. Very unfair how the Ross procedure can work so well for some and not for others.

I can understand his dilemna regarding mechanical versus tissue valves in his position. I, having grown older and hopefully wiser, have left behind my days of mayhem and masochism. Your son, however, is right at the age where those impulses are the strongest. If he cannot learn to tone down his adventures a bit, then tissue valves and resurgery might actually be the safer of the two alternatives. But five years is such a short time between surgeries, though. I think I would have chosen to settle down. Easy for me to say.

I'm sure he will be in very good hands at Mayo. You can't do much better.

Good luck
Randy