Teddy's surgery

[Karlynn]

Teddy (skimomck - Cindy's son) is scheduled for surgery to replace his valves due to a failing Ross Procedure. He will be having both his aortic and pulmonary valves replaced at Mayo Clinic on May10th. Mayo had given Teddy a tentative choice of tissue or mechanical valves. They predict that the tissue valves will last less than 5 years, due to his age (20) and circumstances. There is also a hesitancy for him to choose mechanical because of his active lifestyle of skiing and sailing. Mayo told him he'd be able to ski and sail, but not be able to do the extreme skiing that he does with his job of filming this sport. Mayo also told him that his surgery to replace the tissue valves could be very challenging due to the dacron grafts etc.

As you can see there are a lot of factors that muddle this choice. Needless to say this is a very very tough spot for a young college student to be in, not to mention his very concerned parents. I know they would appreciate any information offered related to Teddy's concerns. Any members who are, or know of, mechanical valve recipients under the age of 25 may be able to provide a perspective that we old fogies can't give. If anyone has, or knows of someone, who experienced re-surgeries in such a timeline, your perspective would also be appreciated. At Teddy's age, the continuation of his lifestyle is a large concern for him.

 

[Ross]

Oh to be young and bullet proof. If only I'd of known what was lurking and waiting to befall me, my choices would have been very different. All I can say at this point is to go mechanical and just continue doing what you do without worrying about what they are telling you. You've got too much at stake to go tissue this time. The reality of it all is that you may not have a third go.

 

[geebee]

Karlynn,

I was not under 25 but was only 28 when I had my first mechanical implanted. I was very active before and after surgery. In fact, after surgery is when I started racing a Star class sailboat which gives you quite a workout. We traveled around the New York/New Jersey areas racing in competition. The only thing I made sure of was to avoid contact between the boom and my head.

I am not a skier so I cannot address that issue. All I can say is I played tennis, swam, went scuba diving, sailed, etc. all on coumadin, all without issues.

Of course you all know my opinion about multiple surgeries - avoid whenever possible.

Hope this helps some.

 

[tobagotwo]

Five years is not much of a trade. It seems like a lot to Ted, because it represents a quarter of his life so far.

At 20, I would be more tempted personally to take the mechanical and go on with the lifestyle (and extreme skiing) that I wanted, despite their advice to the contrary. Everything's a gamble in life. Even with the tissue valve, one week you're Jean-Claude Killy, next week you're Sonny Bono. If it did happen, I'd rather have my health damaged by doing something I loved, than in a surgery that I could have avoided.

(Excerpted - RDH) My son is having valve replacement surgery May 1oth(Mayo Clinic). He had his Ross four years ago and has been having issues with pulmonary stenosis in the homograft for some time and since January he has been symptomatic and now has severe aortic insufficiency and his aortic root is dialated to 50mm and also needs replacing. The recommended plan is to use mechanical valves to replace both his aortic and pulmonary valves. They are planning on using a valved conduit for his aortic valve. Teddy is opting for porcine valves due to his reluctance to be on Coumadin and not wanting to change is current very active lifestyle. Everyone involved in his case is working to convince him otherwise and is trying to make him better understand the risks of having additional OHS's. Even though he is a very bright, at age 20 he lacks some insight into the risks of multiple surgeries and thinks he is rather invinsible...Cindy

A valved conduit is generally used to replace the pulmonary, rather than aortic position, so I admit confusion. I also wonder which valve he is receiving. Edwards and Medtronics both have valved conduits, both porcine, but neither claims to have anticalcification features. St. Jude doesn't show a VC on their site. There are other manufacturers as well, though.

If he doesn't relent, hopefully the five years will turn out to be an underestimate, but I wish he weren't betting the farm on it.

Best wishes,

 

[skimomck]

Bob,
I'm not sure about the type of mechanical valve being considered. We never quite got that far at the appointment to ask those technical questions. He wrote in his surgical consult note that "his aortic vavle would probably require a valved conduit and it is possible that a mechanical pulmonary valve could be implanted" Teddy had unicommmissural aortic valve disease which is probably why his need for a repair was much younger than most with a biscuspid valve. He had his ascending aorta replaced at the time of his Ross but now his aortic sinus is dialated to 50mm. The surgeon just emailed an article to Teddy he just completed that is about to be published that he did with Dr. David Ott from Baylor--- Recent Advances in Prosthetic Valve Replacement, its 39 pages and Teddy forwarded it to me and said he read it, but I don't think it necessary changed his thinking, just educated him more about the choices. Thanks Bob, you are a wealth of information....Cindy

 

[Ross]

Honestly, if I were in his shoes, knowing what I know now, I'd go mechanical and take my chances. Either that or settle down and realize that extreme sports cannot last my lifetime. I wish I could say more.

 

[skimomck]

At 20, I would be more tempted personally to take the mechanical and go on with the lifestyle (and extreme skiing) that I wanted, despite their advice to the contrary. Everything's a gamble in life. Even with the tissue valve, one week you're Jean-Claude Killy, next week you're Sonny Bono. If it did happen, I'd rather have my health damaged by doing something I loved, than in a surgery that I could have avoided.

I think you have captured his theory on life, but he looks at being on Coumadin as a life ending experience.

 

[Karlynn]

I think you have captured his theory on life, but he looks at being on Coumadin as a life ending experience.

So how do we show him that it is a life-saving experience? When I hear of someone thinking of Coumadin in those terms, I often wonder how they'd feel if they found out they were diabetic. It's a disease with so many more complications that has be to managed so much more than a person with a mechanical valve. But it's a disease that we see many more people live with and manage successfully, so it's thought of as not as big a deal. Just thinking out loud here.

Derek is going to try and locate his frat brother with the mechanical valve. I'll call him today and remind him.

 

[tobagotwo]

My son is also twenty. It seems that Ted's approach to advice is right on target for his age. How I wish I knew as much as I did when I was twenty...

It appears that he will not give up the extreme sports. As astonishing as it sounds, that is easily the reality with someone of his years. The real question has to be which is the greater risk: the next surgery or the possibility of injury while on warfarin. If warfarin represents the lesser risk, then you need to agree that he can continue his other pursuits while on it. You would also need to get him a coagucheck or similar, as he's likely not going to be responsive to the lab testing, and if the cardiologist tries to control him through the prescription (and they do), he just may opt off of it. The home machine would let him keep more of his freedom and independence. You may be able to bargain with both him and the cardiologist if he has one.

He has tissue problems, which I gather have now spread to his ascending aorta, and it already sounds very complicated inside his chest. How do the surgeon and cardiologist feel about other segments of his arteries? If they fear that he will have to have yet another surgery for a new section of his arteries within the next five years or so, the tissue valves might work out to be a wash. That operation would be somewhat less dangerous without warfarin bridging. (I know. You don't want to think about five years from now. I wouldn't want to, either, so I understand if you decline.)

If not, the mechanical remains the most sensible option. Do you happen to know which models of valved conduits the surgeon is favoring (tissue and mechanical)?

It sounds like the only way to get him to accept a mechanical is to work out an agreement with him, so he doesn't feel he's losing his chosen life. This is the part of being a parent that makes you wring your hands and curse.

You have my sincerest sympathies in this.

Best wishes,

 

[skimomck]

Bob,
The surgeon is recommending valved conduit mechanical valves and told us he would of done that 4 years ago instead of the Ross. The brand or model I do not know.

 

[skimomck]

Derek is going to try and locate his frat brother with the mechanical valve. I'll call him today and remind him.

That is so thoughtful they he would do that. We haven't found anyone very young(under 25) and very active to talk to him, so that would be incredible and may make a big impact. Thanks you so much.

 

[Gemma]

Hi Cindy,

Firstly, I just want to say that I know what 20 year old guys are like - so I really don't think anything anybody says is going to change Teddy's mind! Still, I thought I'd add our opinion for you and him to mull over...

My boyfriend Jim had his aortic valve replaced in December 2003, at the age of 26, with a mechanical valve. He's a bit older than Teddy and maybe views things differently than he would've done at 20 years old, but he does take part in "dangerous" activities - mountain biking and motorbiking (both on- and off-road). He also has a habit of getting minor injuries at work on a weekly basis - he's a precision engineer and just can't stop cutting himself on tools! He chose the mechanical valve because he didn't want to be counting down the days until his next operation, which he would've been doing with a tissue valve.

Personally, I'm not convinced Teddy couldn't do extreme skiing while taking warfarin. Yes it's a dangerous sport, as is motorcycling, but I don't really see how your blood taking a little longer to clot would be the biggest problem you'd encounter with an injury from either. My brother's non-warfarin taking friend was killed instantly by an avalanche - not taking warfarin didn't save him! Sorry, that sounds a bit harsh - but I hope you get my point. People take the risks they want to take to enjoy the life they want to live. Warfarin or no warfarin. And that's how it should be.

I know in the past people here have been told they "couldn't" do things when they started taking warfarin, and it turned out the doctor who told them that just thought it sounded dangerous. It's a tough one. The main thing is to take precautions, but I'd guess with extreme skiing there would be helmets being worn already, so no big changes there. Unless he is particularly clumsy and forever getting into accidents, it shouldn't be a problem.

We were very fortunate that Jim had a great surgeon and cardiologist who weren't overly alarmist about the need to take warfarin. They've both told him he can do whatever he likes. He has a home monitor and checks his INR between the 3-monthly hospital blood tests. It takes a few weeks of more frequent blood tests, but once the INR is stable it's less of a hassle. I'm not sure what the recommended intervals are in the USA, but over here once the INR is stable they let you go 12 weeks between tests.

So, from a young (ish) guy with a mechanical valve, the advice is - go mechanical! There's no way Jim would want to be going through life knowing he needs another OHS in 3 1/2 years. It took over a year for him to get back to feeling 100%. Teddy may feel better quicker than that, but 5 years is not a great deal of time. Whereas with mechanical valves, he'd just need to take his warfarin once a day, go for blood tests every now and then, and get on with his life .

If Teddy has any specific questions, I'm sure Jim wouldn't mind answering them - if you send me a PM or email I'll forward it on to Jim's email so they can "talk" directly.

Gemma.

 

[Granbonny]

Gemma

Gemma

I'm so glad that you posted that it took Jim a full year to feel 100 percent normal again. I used to take part in Valve choices. I posted many times..Do you really want to take a year off. before you feel 100 percent normal again.....I quit posting..because some members where posting where they were resuming running, ect. I thought it was just me Yes, I was out there keeping up with my age 12 year old Grandson .but never let on to him..How badly I felt. I did things with him during the day..and his Grandad took over after dinner. so I could go to bed. I think it was the magic one year post-op..that I really felt like my old self again. Bonnie

 

[LUVMyBirman]

Hi Bonnie,

You are not alone for sure. It took me 11-1/2 months to feel 100%! Was not an older timer. Ripe 30 I asked a few members at the reunion about this. Few thoughts....the patients that went in feeling sick came out feeling wonderful. Those of us who did not feel fatigued, etc came out feeling worse. I was completely asymptomatic with 4+ reguirg and an enlarged atrium. Go Fiure.

If I have the option of waiting until I feel it next time prior to surgery......I will!

 

[Granbonny]

Gina

Gina

I don't want to hijack this post..but I would love to see a poll...How long before you felt normal after VR replacement. In terms of Months.... Maybe you could start one?Would be helpful..If everyone would be truthful. The ones I remember ..that were driving, ect. have long disappeared from Vr.Com They post soon after their surgery about how great they were doing..but..never hear from them again. I love the newbies..now, that come back on after post-surgery and ask questions about post-op problems. I feel like some just came back on..and posted..No big deal. I do this and that.....and never came back on again. Maybe embarrassed ..I do wish them all the luck..Bonnie

 

[Karlynn]

I guess that maybe it's not a total hijack of the thread. It's something I hadn't thought of in terms of Teddy's surgery. Cindy (Skimomck), Teddy's mom, says that the doctors tell him it will be less than 5 years and he'll need a re-op. I hadn't even factored in the full recovery time. Unfortunately, it would be hard to communicate to a 20 year old that they really need to be careful about not pushing their recovery and could end up with some issues if recovery time is pushed. The problem is, no one can predict how long recovery will take, but we all know it's going to take more than just a few months.

 

[skimomck]

My first reaction was that it may be best not to let Teddy who is one week away from surgery see how many think it takes a year to recover, but the more I thought about it I decided it makes the reality of having another surgery in less than 5 years seem that much more horrific. I agree with Gemma that he should not worry about the restrictions with the Coumadin and live his life and not have to worry about re-surgery in a few years. I think the surgeon is quite relaxed about the restrictions. Teddy is also not factoring in the gradual deterioration of your health as the valves start to give out. He is due home tomorrow, he?s currently driving through Nebraska while we speak. Hopefully I can get him on here for some support, info and advice. Thanks for all of yours.

 

[Granbonny]

Karlynn

Karlynn

That is why I would love to see a poll. I don't know how to post one It would help out when choosing a valve..But, again, I must say..Be Honest... I'm sure the ones who would post...Have stayed with VR for at least a year. Can someone start a poll? bonnie

 

[Karlynn]

That is why I would love to see a poll. I don't know how to post one It would help out when choosing a valve..But, again, I must say..Be Honest... I'm sure the ones who would post...Have stayed with VR for at least a year. Can someone start a poll? bonnie

Your wish is my command . See The Granbonny Recovery Time Poll.

 

[Gemma]

Hi Cindy,
The thing with recovery time is, it takes a while to realise you hadn't fully recovered when you thought you had. For example, after 4 months Jim was out mountain biking in the Welsh mountains and having a great time. But for him to feel FULLY recovered (ie better than before surgery) has taken a little longer - maybe because he wasn't really symptomatic prior to surgery.
Also, I did a google search for warfarin + skiing - and found loads of pages saying what you shouldn't do while taking warfarin - avoid shaving for example! I think everyone here knows that's a load of rubbish!!
Gemma.