44 years old athletic need AVR within month

[torreypines]

Hi,
I'm posting for my husband, Kurt who is at work. We've known for the past 4 years that he would need a new aortic valve. He learned he had a bicuspid valve with AS prior to foot surgery. He has always been athletic (former Marine), runs, lifts weight, trim etc. Plus he rides his Harley to work, we love to travel and he wants to start flying again. We met with the cardio-thoracic surgeon yesterday and we discussed a couple of options:

1. Mechanical: On-X
2. Tissue: Magna Paracardial by Edwards
3. Tissue: Mitroflow by Carbomedics

We're heavily leaning toward tissue because of lifestyle. My husband feels that he would rather have a future surgery than feel tethered to coumadin. We're encouraged by medical advances for future surgeries.

I would love to hear from those that have a similar profile; learn about your surgery, your recovery and how you're doing now.

Thanks in advance,

 

[Lily]

Welcome to the site .

There is a member here who was a pilot before his surgery -- I think from Texas -- and I haven't followed his posts to see if he's flying again.

Best wishes to you and your husband.

 

[Ross]

I'm biting my tongue and it's bleeding.

 

[ChouDoufu]

howdy. other than the bicuspid part, your situation is almost exactly
like mine was ten months ago. four years between diagnosis and
replacement, athletic - running and cycling. avr at 45.

we're at the age where the tissue/mechanical decision is not obvious.
i went with tissue for a number of reasons, but bleeding out was not
one of my worries. i'm a light sleeper, and could not take the chance
of a ticking valve. i don't have a set diet, will eat whatever i can
find at the roadside stalls, so no way to dose my diet. didn't want to
worry about carrying a testing device while cycling through cambodia
or mongolia.

being in shape has really accelerated the recovery process. at six
months i bicycled from china to thailand, and for my one-year
valversary, i'm planning on running my first marathon since '95.

feel free to pm me if you have any questions.

 

[dcpickle]

Christine, I believe most of the people around here who are on Coumadin will say that once they got their dosage under control and properly managed, it was not nearly as big an encumbrance as they thought it would be. Most of the problems we hear about are a result of improper dose management. These people would also probably say that we shouldn't make current decisions based on future medical advances. You never know when, or if, advances will come. In other words, I think you'll find more people who would recommend a mechanical valve for a 44 yo than those who would recommend a tissue valve. The question of valve type is constantly debated here, but there is great tolerance for all viewpoints. All the valve types will save your life, after all!
Having said that, I opted to avoid Coumadin and have A Ross Procedure. It gives me the hope of many years without a resurgery, yet without the need for Coumadin. Five years out, it has been good for me.
Good luck in this adventure. There is life after valve surgery.

 

[coach14]

Welcome to the site.

My situation was very similar to your husband's. I am 42 years old and needed an aortic valve replacement. I too was (am) active, running and biking recreationally, as well as coaching baseball, soccer, and basketball. So I am out on the fields a lot. I know a lot of people on this site will tell you that coumadin is not a big deal, and for them I am sure that is true. For me, I was not ready at my age to sentence myself to take it for the rest of my life. My surgeon also brought up the rapidly advancing technologies and hearty surgery may be very different 10 or 15 years down the road.

I choose to go with the Carpenter-Edwards bovine tissue valve and it was as big one -29mm. As I have said in previous post, my biggest concern was that fact that I was setting myself up for at least one more surgery in my lifetime and I did not know what to expect. Prior to my AVR surgery, I had never been in the hospital.

I don't regret my decision a bit. Given your husband's physical condition, I suspect he will come through the surgery just fine. I was very lucky and had a very successful surgery and a textbook recovery. I did have a bout with a-flutter, which did require me to go on coumadin for a couple of months, but I will be stopping that within the next couple of weeks, as my heart is now back in rhythm.

As I said, I was very lucky and there is nothing about the surgery or recovery that has me worried about my future surgery. Obviously, I know I will be older, but it really was not that bad. I had my AVR done on 7/27 and this past weekend, I raked and bagged 54 bags of leaves and split about a 1/4 cord of wood, with in ill effects. Your husband will be fine.......

 

[tprice54]

Welcome...we have many different kinds of athletes here, runners, bikers, triathletes. Some have tissue, some have mechanical, some had a Ross procedure, some had mitral repair, but all got back in shape and are athletes again.

 

[torreypines]

Thanks so much for all of your help and feedback. The past couple of months have been a bit of a nightmare. We knew Kurt had to have the surgery for a while now but learned over the summer that I had the BRCA1 mutation (the breast and ovarian cancer gene). I had to have a hysterectomy and oopherectomy in September and a double mastectomy 3 weeks ago. It's been a bit much and we're thankful that we have another couple of weeks before my husband has to have his surgery. I've learned through my ordeal the power of sites like this. They are a Godsend and an incredible resource. I will be researching this site a ton over the next week and will gladly contact those that have offered private messages. After reading your posts last night and words of encouragement, we actually slept pretty well. It's nice to know that there is life and a really good life after AVR. For a while, we were concerned we might be leaving our kids as orphans. Ugh...thankfully the clouds are clearing and we're starting to look down the road a bit.

 

[Lily]

"It's been a bit much . . . " Wow, I'd say! Hoping your recovery is going very well, Christine.

Take care .

 

[MarkU]

I had my biscupid valve replaced when I was 47, nine years ago.
I have always been physically active and being in good shape helped with my recovery. Even though I was fully functional at three months, I had lingering effects and a lack of stamina for at least nine months post-op.

I chose a mechanical St Jude valve to minimize the possibility of future surgeries. Although my surgery went well, it's still major surgery and not something I would choose to go through again.

Coumadin is a non-issue for me. It's just not.

Ticking is also not an issue. In my case I have a muscular torso which I'm told helps to muffle any valve noise. I was aware of it at first, but don't even notice it now unless I focus on trying to hear it.

I'm still very active and actually took up triathlons three years after my AVR with my doctor's blessing. Did my first half marathon with my son earlier this year (see my avatar).

I am absolutely convinced that I made the right choice for me, especially given my choices at the time.

Mark

 

[briansmom]

Hi Christine,
we are from San Diego also. Where is your husband having surgery? I had no choice but to choose mechanical for my son because he was so young and had significant heart damage. In spite of being anti-coagulated and having many other health problems he still maintains a pretty active life including off-roading. Managing coumadin is really no big deal so I think that should only be a small factor in your decision. That being said, I also think tissue would be a fine choice as long as you realize that he will probably have another surgery in 10-20 years - unless the transcatheter valves advance a lot farther than where they are now. We had a friend (42 years old) that got a tissue valve at about the same time that my son got his mechanical. He is very happy with his choice and continues to race off-road.

Whatever you choose will be the right choice for your family. There are no wrong decisions here.

 

[james]

So why is this such an issue. I believe my surgeon that I should go with the mechanical myself but, I can not wrap my head around the fact that I am on a medicine for the rest of my life (39 now). It looks like we all go through this. The one thing that is true with all of us is that without a new valve we have much less of a chance to find out if we are ok with the choice. Anyhow good luck to your husband and you.

 

[Hank]

is Torreypines where you live? My sister lives in the Torrey Pines area.. Anyways - I am so glad that you at least have a place like this to discuss the choices with people. I wish that when I was faced with having my bicuspid replaced 10 years ago - that I would have had a place to learn more.
I had a St. Jude Mechanical Aortic chosen for me. Lucky for me - knowing all that I know now - that's the choice I would have made anyways.

Keep us updated...

 

[Philip B]

Valves

Valves

Perspectives on valve choice show-up here often...

I opted for mechanical in hopes that I could reduce the possibility of doing surgery again. It's been a good choice for me despite my active lifestyle. Yeah, I do a lot of physical activities. A mechanical valve and coumadin hasn't presented any problems for the activities I do.

Ticking? Body acoustics differ. Yes, I did notice the click or tick that my valve makes initially, but eventually that changed. I have to concentrate to listen for it now.

I've heard different stories about FAA regs concerning pilots and coumadin. My school nurse lost her brother to a clot induced heart attack several months ago. According to her, he was supposed to take coumadin to counter blood clot issues, but refused to take his meds because he would've lost his pilot license if he was on coumadin. Someone out there probably can post a link to the FAA regs. This has been a topic here before.

-Philip

 

[Lily]

Here is one thread with some questions about flying from last year if you're interested, including some further links within: http://valvereplacement.com/forums/showthread.php?t=26875&highlight=pilot

 

[torreypines]

howdy. other than the bicuspid part, your situation is almost exactly
like mine was ten months ago. four years between diagnosis and
replacement, athletic - running and cycling. avr at 45.

we're at the age where the tissue/mechanical decision is not obvious.
i went with tissue for a number of reasons, but bleeding out was not
one of my worries. i'm a light sleeper, and could not take the chance
of a ticking valve. i don't have a set diet, will eat whatever i can
find at the roadside stalls, so no way to dose my diet. didn't want to
worry about carrying a testing device while cycling through cambodia
or mongolia.

being in shape has really accelerated the recovery process. at six
months i bicycled from china to thailand, and for my one-year
valversary, i'm planning on running my first marathon since '95.

feel free to pm me if you have any questions.

Sounds like you're really living life on your terms...it's wonderful! I'm amazed at how quickly you were able to bounce back and cycle so far. We like riding our bikes too, though we have Dahon city bikes. We discovered them in Paris and fell in love with the portable freedom. Best of luck with your marathon...you'll do great.
~Christine

 

[torreypines]

Christine, I believe most of the people around here who are on Coumadin will say that once they got their dosage under control and properly managed, it was not nearly as big an encumbrance as they thought it would be. Most of the problems we hear about are a result of improper dose management. These people would also probably say that we shouldn't make current decisions based on future medical advances. You never know when, or if, advances will come. In other words, I think you'll find more people who would recommend a mechanical valve for a 44 yo than those who would recommend a tissue valve. The question of valve type is constantly debated here, but there is great tolerance for all viewpoints. All the valve types will save your life, after all!
Having said that, I opted to avoid Coumadin and have A Ross Procedure. It gives me the hope of many years without a resurgery, yet without the need for Coumadin. Five years out, it has been good for me.
Good luck in this adventure. There is life after valve surgery.

Thanks for the words of support DC. So glad to hear you're doing well 5 years out and enjoying life.
~Christine

 

[torreypines]

"It's been a bit much . . . " Wow, I'd say! Hoping your recovery is going very well, Christine.

Take care .

Thanks Lily, you're very sweet. I haven't had any complications and was cleared by my oncologist yesterday, so it was a good day! A big thank you for the links on aviation. I will be researching those today.
~ Christine

 

[torreypines]

I had my biscupid valve replaced when I was 47, nine years ago.
I have always been physically active and being in good shape helped with my recovery. Even though I was fully functional at three months, I had lingering effects and a lack of stamina for at least nine months post-op.

I chose a mechanical St Jude valve to minimize the possibility of future surgeries. Although my surgery went well, it's still major surgery and not something I would choose to go through again.

Coumadin is a non-issue for me. It's just not.

Ticking is also not an issue. In my case I have a muscular torso which I'm told helps to muffle any valve noise. I was aware of it at first, but don't even notice it now unless I focus on trying to hear it.

I'm still very active and actually took up triathlons three years after my AVR with my doctor's blessing. Did my first half marathon with my son earlier this year (see my avatar).

I am absolutely convinced that I made the right choice for me, especially given my choices at the time.

Mark

Hi Mark,
Thanks for your post. Congrats on your half marathon! Glad to hear you are able to be so active with the mechanical valve and that coumadin is not a big issue. We'll be reading more about it over the weekend and talking with the cardiologist early next week about how coumadin is managed. As far as ticking, we have a grandfather clock that chimes every hour and we rarely hear it unless someone points it out. I wonder if it's the same with the mechanical valve. I'm glad you're happy with your choice...that's a good place to be.
~Christine

 

[torreypines]

Welcome...we have many different kinds of athletes here, runners, bikers, triathletes. Some have tissue, some have mechanical, some had a Ross procedure, some had mitral repair, but all got back in shape and are athletes again.

I love your dog! Thanks for the words of support. It's really encouraging to hear how good things can be after surgery.
~Christine