Valve choice and snow skiing

[gageyk]

I decided to start a new valve choice thread because I couldn't find any questions from a snow skier, which seems to be my cardio's and surgeons main reason for recommending a tissue valve.

I'm a 44(yesterday) year old, asymptomatic male, who 2 weeks ago today was told that I need AVR. I've known about my murmur all my life. About 4 years ago a good friend of mine had OHS at age 41. I decided to have my murmer checked. My doctor had me do the echochardiagram and mild aortic stenosis was detected. I was told to follow up in 5 years. Fast forward to Sep. 2004, pre-employment physical, EKG was out of whack, got another echo. Stenosis had progressesd but cardio said still had 10-15 years before AVR, follow-up echo 6 months later. July 28, 2005-follow-up echo-calcified much more rapidly than expected. You need to see a surgeon. Surgery set for August 24, 2005 Washoe Medical Center, Reno, NV.

I ski/snowboard/ telemark 50-60 days a year and ride a mountain bike for recreational pursuits only plus I spend alot of time in the backcountry either on skis or backpacking. I'm willing to cut back on "wicked" mountain biking but not on my winter recreation.

Both my cardio and surgeon are recommending a tissue valve, I had a 3rd consult today and mentioned all that I had read about mechanical valves and the lack of apparent lifestyle restrictions coumadin was placing on people in these forums. He still recommended the tissue valve to keep me off of coumadin. I also have hypothyroidism and take levoxoyl everyday-doc counldn't give a definitive answer if there could be a reaction between the two.

Does anyone have any thoughts or expereince on this?

This forum has been a great source of information, it's both frightening and encouraging to read experiences from people who have been through what I'm about to got through.

 

[Ross]

Hello and welcome

I'll start by saying that most, not all, Doctors haven't the foggiest clue as to how Coumadin works. That is our experience here and I've had personally experienced myself. My surgeon couldn't get a handle on it, but my Cardiologist does. As long as you are taking necessary precautions against head injury or significant trauma, I don't see why you couldn't continue your winter recreation. If the medical community had it their way, they'd place us all in rocking chairs to finish our remaining days. None of us will give them that satisfaction. There is so much myth and misunderstanding about Coumadin, that most physicians are relying on knowledge of the stone age and have never gotten up to speed on recent events. Everyday, we wonder if we'll see them all on the same page in our lifetimes.

With that being said, the thyroid problem may be a deciding factor, but even then, if you were on Coumadin, the dose would be adjusted accordingly.

http://www.warfarinfo.com/levothyroxine.htm

It's really your call. No matter what valve you choose, there is no guarantee that you won't need another reop, but going tissue would pretty much guarantee at least one more in your life time. I'm for anything that keeps you out of the surgical scene. I truly believe you should only consider doing this one time and no more, even though others have done it many times. Each successive surgery presents it's own set of problems. Another thing, if you went tissue and develop afib afterwards, your going to be on Coumadin anyhow, so that is distinct possibility to consider.

I'll let others weigh in, but your kind of at that age where either choice is difficult. Tissue makes sense in lots of ways, but then again, it doesn't. What is your gut instinct telling you?

 

[Chuck_S]

My thoughts...

My thoughts...

I am 37 (38 on your surgery date) and have been very active. I played tennis in college, but I do not find myself mountain biking very often.

I decided on the tissue valve, other younger folks have done this too. My surgeon said that he is aware that many doctors recommend a mechanical valve for others but would choose a tissue valve for themselves. This is not a "study" just a comment from my surgeon.

Consider the Maze procedure (to combat a-fib), in addition to the AVR. Doc said it was very easy to do, because he was already "there". Just a thought, I bet it will become more popular.

Good luck and keep us posted,
Chuck S

 

[Ross]

Just a toss in---Having the maze procedure does not guarantee a cure. Yes, it's helped some, but it's also been ineffective in others.

 

[OldManEmu]

Gageyk
I asked similar questions last year before my AVR.
I was 41 at the time and had no other health problems. My two great indulgences are riding motorcycles and snow skiing. I have come off the bike once in the last ten years and even wearing protective gear I have first hand experience of the sort of bruising this generates even when not on Coumadin.
I couched the questions I asked the doctors in terms of snow skiing because most doctors in Australia seem to think it is the duty to deter anyone that rides a motorcycle from doing it.
I was told to avoid any activity that could result in a heavy blunt blow to either the head or body if on Coumadin. This applied wearing a helmet or not.
I was told I should avoid snow skiing, contact sports (football) and anything similar.
There would however be no limitations after full recovery (3 months) on aerobic exercise, basically you could push yourself as hard as you liked.
I elected to have a Ross procedure however my condition deteriorated in the week before surgery so finished up with a tissue valve.
In the end it is a personal decision based on what you consider an acceptable risk both in terms of operation(s) and physical activity.
What ever you decide will be the correct one for you based on all the issues that are important to you.

 

[MarkU]

First, let me say that I used to be a snowskier, but that was before I moved to FL. Don't get too many chances anymore.

I had my AVR at 47. Like you I had known about my condition since age five, and had always been advised that I would likey need valve replacement surgery later in life.

My cardiologist and surgeon both strongly recommended a mechanical valve, primarily to reduce the probability of future surgeries down the road. AVR surgery was tough enough the first time at a relative healthy 47, and I wouldn't want to go through it again being 15-20 years older, it I can avoid it.

My experience has been that while most doctors probably do understand how Coumadin/Warfarin works, some (including some dentists, oral surgeons and gastroenterologists I have encountered) take more of a CYI approach to make their lives easier, not their patients.

To be fair, there are some excellent doctors and other healthcare professionals out there who do understand anti-coagulation therapy and administer it in the best interests of their patients. My best advice would be to approach your situation as an informed consumer, educating yourself using this site and the many other resources out there. Don't be afraid to ask questions and get the answers you want before you intrusting your health (& possibly your life) to just anyone.

The riskiest thing I do (besides getting out of bed in the morning) is ride my bike on the open roads training for triathlons. My biggest fear is getting hit by a careless/incompetent/hostile driver. In that case, I really don't think that wearing a helmet or being on Coumadin is going to make that much of a difference.

Mark

 

[RCB]

Maze

Maze

Just a toss in---Having the maze procedure does not guarantee a cure. Yes, it's helped some, but it's also been ineffective in others.

The truth about a Maze procedure is the term has come to include all kinds
of procedures with all different chances of curing afib. You have to ask a surgeon what kind he does, how does he do it and what are his percentages
when it comes to curing a-fib. The Gold Standard is a Cox-Maze procedure
developed by James Cox in '87 in St. Louis. It is a very difficult procedure and takes about a hour to do. Most surgeon do a Wolf-maze, Cox-maze III or Mini-maze which is a lot easier to do, takes less time and does not have a
very high percentage cure rate. Most cardiologist and a lot of surgeons don't
know the difference. Kind of like warfarin therapy

 

[twinmaker]

I had my mitral valve replaced with a St. Jude mechanical back in 1981. I have been snow skiing since then...the last time about three years ago in Breckenridge CO. I didn't wear a helmet but I didn't do anything real foolish while skiing either. I also ride a bike and wear a helmet. I also play tennis every week. We now live in Florida so don't get to snow ski much. The only thing my surgeon told me when he replaced the valve was not to play contact sports or sky dive. That was OK with me. I mean, let's face it... we're probably more likely to be in a car accident than anything else and I don't know of anyone on Coumadin who wears a helmet while driving. I don't take unnecessary risks but I certainly don't stop and think about each and every thing I do. I am not trying to make "light" of what you are facing. You ultimately have to be the one to make the decision about your valve choice. Get all your questions answered to your satisfaction, do your research, talk to others (like you're doing here), and then make your decision and don't look back. Linda

 

[Joel]

Skiing

Skiing

I am not a skier, but my surgeon is.

When discussing coumadin he was very specific about me being able to Ski after receiving a mechanical valve. His only suggestion was that I wear a helmet. Not so much because of Coumadin, but because of "The other nutballs on the slopes."

So, I have my surgeon's blessing. Too bad I can't ski. By the way, my not skiing is a side effect of living in Florida for 25 years.

 

[lance]

Winter sports and intolerance of the cold

Winter sports and intolerance of the cold

Hi there,

This is something you might want to think about.

Since mitral valve replacement 6 years ago (mechanical) most of the winter I am cold--sometimes chilled to the bone. When these chills come, I cannot get warm even wrapped in blankets, in a centrally heated house and sipping hot beverages. I can honestly say that from October to May I'm cold to varying degrees and it makes outside activity at that time undesirable. It doesn't matter how many layers of clothing I can't get warm.

Personally, I'm more concerned about the chills than the injuries. If you're good at it and know your limitations and ski safely at your level, why not.

 

[Karen7]

Both my cardio and surgeon are recommending a tissue valve, I had a 3rd consult today and mentioned all that I had read about mechanical valves and the lack of apparent lifestyle restrictions coumadin was placing on people in these forums. He still recommended the tissue valve to keep me off of coumadin. I also have hypothyroidism and take levoxoyl everyday-doc counldn't give a definitive answer if there could be a reaction between the two.

Does anyone have any thoughts or expereince on this?

Hi Gageyk,

Welcome! In defense of your doctors, maybe they haven't recommended a tissue valve for you out of ignorance. Definitely, if you end up with a mechanical valve (not everyone gets to pick) this is the day and age to make the most of it and this forum is the place to get support.

But choosing a tissue valve means that you only have to give up "wicked" mountain biking if you want to, and not because you have to. It means that you don't have to worry about your levoxyl levels affecting your coumadin levels and vice versa. You get your thyroid levels checked regularly, right? And adjusted as necessary? Levoxyl further thins the so every time the one medication is changed the other will need to be too. See Al Lodwick's warfarin info page: http://www.warfarinfo.com/levothyroxine.htm

Ideally, none of us would need any more open heart surgeries. A tissue valve will mean that there will be some kind of surgery in your future. But it's not too idealistic to expect that repair or replacement can be done percutaneously (a minimally invasive slit between two ribs.) Many surgeons are already doing them and by the time you're ready for a re-do, it will be the standard, not the exception. Today's medicine is yesterday's miracle. Today's miracle is tomorrow's medicine.

And, you've probably thought of this but a mechanical valve lasts a lifetime --the valve. The tissue that it's attached to can still have problems necessitating surgery. The same cells that malformed your valve have formed your aorta and it's prone to weaknesses. For more information on the connective tissue disease that accompanies congenital bicuspid aortic valve, see http://bicuspidfoundation.com/About_Us.html

So no guarantees with a mechanical valve, either. After being a member of this forum for a few weeks, I have definitely noticed that the people who research and choose their valves are happy with their choices; they make the best one for themselves. As you can see, there are plenty of satisfied customers with mechanical valves. The same with tissue valvers. The ones who didn't get to choose, or who weren't fully informed can be the ones with regrets. You're one of the lucky ones.

God bless,
Karen

 

[Karlynn]

Welcome! In defense of your doctors, maybe they haven't recommended a tissue valve for you out of ignorance. Definitely, if you end up with a mechanical valve (not everyone gets to pick) this is the day and age to make the most of it and this forum is the place to get support.

I believe his post said that his cardio and surgeons recommended a tissue valve.

Be careful about using the term "ignorance". (Thems tends to be fightin' words with this group. ) I had the top cardiologist at Norwestern Memorial Hospitial and the top "pump mechanic" and both recommended a mechanical when I had my surgery at 32. Almost 14 years later my mech mitral is doing nicely. Mine was installed when much less was known about regulating Coumadin. Many of us on Coumadin feel that some doctors are too quick to recommend tissue valves to younger patients because of their lack of knowledge and understanding of Coumadin. I'm sure the reverse can be true about tissue valves in regards to longevity.

It's very true that mechanical does not guarantee no additional surgeries for a young adult. But at 44, I think he runs a better chance of no additional surgeries with a mechanical, than if he was younger. Regardless of what the choice is, I think we all have the target of accomplishing a healthy, long-lasting heart, with as few surgeries as possible.

 

[Buzz Lanning]

I'm 47 years old and had my aortic valve replaced last July. I still snow ski with a mechanical valve (and Warafin). I skied 8 days last season in my home state of Colorado. I do wear a helmet. This is definitely a personal decision, but I'm very comfortable skiing.

 

[Granbonny]

Hi Gageyk

Hi Gageyk

We owned a condo on the slopes of Sugar Mountain in N.C. for 10 years....Yes..great skiing .mostly with man made during the night.. My son took my now age 13 year old Grandson in a backpack..Front..when he was 7 months old..After that..he skiied with NO poles for a long time.Son had to use poles..because he would be worn out following him down the slopes. Our Condo was right on the slopes..so I saw many newcomers fall, ect...Poles flying everywhere. It was mostly a tourist type place..with Church buses bringing kids from Fla., ect..... I'm sure you ski in remote area..so no fear to have to watch out for first time skiers... I quit when my now age 37 year old daughter wanted to go to expert run..I agreed..she was age 10...I fell so many times..Lost her..looked up and she waved to me from ski lift going back up to top... ..Figured no need for me to go with her again.. We had a branch of water between our condo and slopes..Saw many people end up in freezing water. ....Enjoy...but be aware of flying poles.. ..Bonnie

 

[Granbonny]

P.S. to gageyk

P.S. to gageyk

Good luck with your surgery on August 24th..We at VR.Com will be thinking of you.. Please let us know how your surgery went...I'm sure you will do great......but..also remember it takes your sterum a full 6 months to heal..so no skiing.. this winter...Maybe a little something next Spring....Let us hear back from you..Bonnie

 

[chilihead]

Find out who does the Ross procedure in your area and talk to them for a second or third opinion. doctors that don't know how will not recommend it and I suggest getting a surgeon that has done at least 100 or more. I had a Ross almost 2 years ago and skiied 16 days last winter. Mountain biking and road biking as much as I can when I'm not at happy hour and riding my Harley on good weather days. You'll appreciate everything you do more after the operation. Just do your homework and go with what feels right to you.

Good Luck,

Jim

 

[gageyk]

I had a 4th consult today with a heart surgeon who is buddies with my brother-in-law. The surgeon bikes and skis with my bro-in-law and we are all about the same level or very similar. Interestingly enough, the surgeon said while skiing it's the other guy that is the worry, collisions, etc. I quizzed him in depth about coumadin and what I had read and learned. Surgeon still recommends tissue, he is the fourth doctor to do so, so I 'm going to go with the tissue valve.

Thanks for the many replies, it is a very hard decision to make and definitlely one I was not expecting to make so soon in my life. I will keep monitoring and posting on the site for insight and encouragement. I'm down to my last 7 days with my "'61 orginial" body.

 

[Ross]

Picking the valve is as much fun as waiting for the surgery. Glad to see you've made your choice. Now that's out of the way, may I ask as to the specifics of why they want to go tissue? I'm just curious as to the how these discussions went with these gentlemen. Trying to get their mindset as to what they're thinking is today.

 

[bobcatrel]

The valve decision is the toughest. Good luck with your surgery. For me, besides being active - biking, mountain biking, etc. was my own belief that it is better to stay off any medication, for any problem, if possible.

 

[chilihead]

You'll be surprised how good you're going to feel 6 months down the road. Plus every ski run seems that much sweeter knowing that if you had gone mechanical you might shy away from th eactivities you love. I said "might". THere are many on the forum that tear it up on skiis with mechanicals. Your friend is right about worrying about the other guy on the skiing collisions. I was skiing once with a friend that had just had some minor surgery so he stayed in for a few days in Steamboat. On the 3rd day he ventured out and was taking it easy on a blue run. He stopped midway to catch his breath and got plowed by a dude on a snowboard. Broke his collar bone and ended his skiing for the rest of the trip. I was thinking of that when I decided to get the Ross procedure. All you have to do now is get it done and recover. Best of luck on your surgery.