44 years old athletic need AVR within month

[torreypines]

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.

Hi James,
Thanks for the post. You'll have to let us know what you end up going with. I see you're having your surgery in Seattle. Kurt is originally from Bainbridge Island. It's beautiful in the Northwest. You're right, there's a lot to come to terms with in the "new normal" but as humans I guess we're incredibly adaptive. Thanks for the well wishes and best luck to you too with your upcoming surgery.
~Christine

 

[torreypines]

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...

Hi Hank,
Torrey Pines is our favorite beach/state park. I wish we lived nearby but that's been out of our price range! Kurt's oldest brother lives in Mesa. Small world Thanks so much for creating this site. What an incredible thing to do and what a difference you're making in lives. Glad to hear that you're doing well with your St. Jude valve. I think we'll be able to make a decision that we feel good about in large part to hearing about other's experiences, trusting our gut and prayer.
~Christine

 

[torreypines]

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

Hi Philip,
Thanks for you post, it's very helpful. How tragic for your friend to have lost her brother over not wanting to take his medication. It sounds that you have adjusted well to your mechanical valve. I guess you can't really ask for more than that.
~Christine

 

[Bridgette]

Good luck to you and Kurt as you go forward with this Christine. It's not an easy decision choosing a valve but whatever you decide will be the right choice for you.
And, welcome!

Bridgette

 

[torreypines]

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.

Hi Deanne,
We're having the surgery at Sharp (new hospital on Frost Street). It's reassuring to know that either valve will be okay. You sound like an amazing mom. I wish Brian continued good health.
~Christine

 

[torreypines]

Good luck to you and Kurt as you go forward with this Christine. It's not an easy decision choosing a valve but whatever you decide will be the right choice for you.
And, welcome!

Bridgette

Hi Bridgette,
Thanks for the warm welcome.
~Christine

 

[Ross]

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

It depends on what class of pilot certificate were talking about. You can fly on Coumadin, but the FAA is really strict about INR control. Actually they're ridiculous, but that's just because of our wonderful medical field being still ignorant about how Coumadin works after nearly 50 years. I don't get it. They can figure out how to put a valve in through a vein, but they can't understand Coumadin.

http://ecfr.gpoaccess.gov/cgi/t/tex...&rgn=div5&view=text&node=14:2.0.1.1.5&idno=14

http://www.leftseat.com/Programs/valve.htm

http://www.leftseat.com/pdffiles/SPEC-VALVE.pdf

2. A current evaluation from your attending physician regarding your use of
Coumadin to confirm stability without complications, drug dose history
and schedule, the actual prothrombin time (PTT) and control
determinations, and International Normalized Ratio (INR) values,
accomplished at least monthly during the past six-month period of
observation.

 

[gadoty1]

My problem with considering possibly future surgery is the scar tissue that build up after the first OHS. I personally have had OHS twice now and my second surgery should have been about 5 hours was 8 hours long. The first 5 hours was the surgeon digging through scar tissue. I am thankful to have a skilled and very patient surgeon to get through all of that tissue otherwise I wouldn't be alive right now. I am very happy with my On-x valve and don't regret it for a second.

 

[torreypines]

My problem with considering possibly future surgery is the scar tissue that build up after the first OHS. I personally have had OHS twice now and my second surgery should have been about 5 hours was 8 hours long. The first 5 hours was the surgeon digging through scar tissue. I am thankful to have a skilled and very patient surgeon to get through all of that tissue otherwise I wouldn't be alive right now. I am very happy with my On-x valve and don't regret it for a second.

Hi,
Glad to hear your experience is positive with On-X. Can you tell me what it's like on a day to day basis? How has it impacted your lifestyle?
Thanks,
Christine

 

[torreypines]

It depends on what class of pilot certificate were talking about. You can fly on Coumadin, but the FAA is really strict about INR control. Actually they're ridiculous, but that's just because of our wonderful medical field being still ignorant about how Coumadin works after nearly 50 years. I don't get it. They can figure out how to put a valve in through a vein, but they can't understand Coumadin.

http://ecfr.gpoaccess.gov/cgi/t/tex...&rgn=div5&view=text&node=14:2.0.1.1.5&idno=14

http://www.leftseat.com/Programs/valve.htm

http://www.leftseat.com/pdffiles/SPEC-VALVE.pdf

2. A current evaluation from your attending physician regarding your use of
Coumadin to confirm stability without complications, drug dose history
and schedule, the actual prothrombin time (PTT) and control
determinations, and International Normalized Ratio (INR) values,
accomplished at least monthly during the past six-month period of
observation.

Thanks for the links Ross.

 

[gadoty1]

I haven't stopped doing anything that I did before my AVR, actually I have a lot more energy so I am probably more active. I didn't know how bad I was until I was "fixed". I exercise almost daily for about 40 minutes.I actually got a horse last week and I am getting a riding helmet this weekend so I can ride it. I guess I do protect my head a little more than I would if I wasn't on coumadin. I live a very normal life for a 29 year old. The fact that I am on coumadin doesn't even cross my mind on most days.
The only complaint I do have is more for doctors who are uneducated about coumadin. If for some reason I need some type of medication, like antibiotics, I normally check for drug interactions online just to be on the safe side. So far I haven't had any incidents with bleeding or way out of range INR. I think the amount of time it takes me to stop bleeding if I nick myself is not noticably different than it was before.
I haven't changed my eating habits to cater to my coumadin.
I have a home monitor and I check my INR every 2-3 weeks, no big deal at all. I too was extremenly scared of the thought of coumadin but decided that the fewer times I had to have OHS the better. Coumadin is the only medicine that I am on and I set an alarm on my cell phone to go off every night at 8. If I haven't taken it by then I won't forget before I go to bed.
I was told righ tafter my Ross procedure was done that I would need another AVR in about 8-10 years. I felt like I carried this weight around for the whole 8 years just knowing that I would have to go through OHS again. It was a horrible feeling. Now that I have my ON-x I still may need my pulmonary valve replaced some day because of my failed Ross procedure but at least I did what I could to avoid even more OHS.

 

[Philip B]

Adjustment?

Adjustment?

I'm not sure there's been much adjustment. My life and how I pursue it is pretty much the same now as it was before AVR surgery.

The only real differences in my life now v. before are taking my coumadin once a day and doing a home test of my INR once a week. MY test takes less than five minutes.

Oh, there is also my habit of dropping by here to visit with members of this online community.

My point here is that valve replacement surgery is about getting on with one's life and that can be pretty normal.

-Philip

 

[torreypines]

Hi Philip
Thanks for sharing your information your input helps with the decision making process.
Kurt

 

[torreypines]

Hi gadoty1
You have the unique perspective of the Ross procedure and the mechanical valve with Coumadin management. Thanks for sharing your experience; your input is greatly appreciated. The folks on this board all have very useful information to share. Congratulations on the purchase of your horse. I have an affinity for draft horses the gentle giants of the horse breeds.
Thanks again
Kurt

 

[ctyguy]

Im 44, had my OHS 18 months ago. Textbook bicuspid AVR. I had no clue I had an issue until I went to a cardiologist on my own to rule out heart issues. Big suprise ! My stenosis was severe (.09) and the pressure gradient was peaking at 115 so after picking my face up off the floor I was surgeon shopping the next day and on the table 14 days later.

I went with an On-X because I fully expect to be here for at least another 40 years and I didn't want to deal with potentially multiple additional surgeries. Coumadin has been a snap thus far, really a non-issue. Im a runner and play some basketball with a group of 40-somethings on a regular basis. I get banged and scraped up here and there but its a total non-issue. I might bruise a little easier. I've also skiied since surgery and have gotten back on ice skates recently. I've got a friend who is trying to get me to play hockey. Its non-contact in theory but not in reality. If I can get my skating skills back up to speed I will probably give it a go.

Everyone is different, whatever you guys choose is going to give you a great result. Explore all your options and go with what your gut tells you.

Best of luck !

 

[njean]

Just wanted to welcome you & your husband to this wonderful site. I hope that by being able to communicate with those of us here who are OHS survivors, you will feel a little less frightened & become more knowledgeable of the options available to you.

I've been on coumadin 34 years, am a 3-time OHS survivor & 2 other major surgeries in my 58 years. I've lived a very active & energetic life & have never let coumadin keep me from doing anything that I wanted to do. The only restraints I've had, have been those that I have chosen to place on myself.

Whatever valve your husband choses to go with, will be the right choice, so long as he is comfortable & knowledgeable with his decision.

And please, take care of yourself too.... you have been thru so much.

Best wishes & prayers to both of you!

 

[torreypines]

Im 44, had my OHS 18 months ago. Textbook bicuspid AVR. I had no clue I had an issue until I went to a cardiologist on my own to rule out heart issues. Big suprise ! My stenosis was severe (.09) and the pressure gradient was peaking at 115 so after picking my face up off the floor I was surgeon shopping the next day and on the table 14 days later.

I went with an On-X because I fully expect to be here for at least another 40 years and I didn't want to deal with potentially multiple additional surgeries. Coumadin has been a snap thus far, really a non-issue. Im a runner and play some basketball with a group of 40-somethings on a regular basis. I get banged and scraped up here and there but its a total non-issue. I might bruise a little easier. I've also skiied since surgery and have gotten back on ice skates recently. I've got a friend who is trying to get me to play hockey. Its non-contact in theory but not in reality. If I can get my skating skills back up to speed I will probably give it a go.

Everyone is different, whatever you guys choose is going to give you a great result. Explore all your options and go with what your gut tells you.

Best of luck !

Hi Scott,
Thanks so much for sharing your story. It's great to hear from someone that is Kurt's age and chose a valve we're considering. It's encouraging to know that coumadin has been a non-issue for you. Best of luck with the skates...that sounds fun!
~Christine

 

[torreypines]

Just wanted to welcome you & your husband to this wonderful site. I hope that by being able to communicate with those of us here who are OHS survivors, you will feel a little less frightened & become more knowledgeable of the options available to you.

I've been on coumadin 34 years, am a 3-time OHS survivor & 2 other major surgeries in my 58 years. I've lived a very active & energetic life & have never let coumadin keep me from doing anything that I wanted to do. The only restraints I've had, have been those that I have chosen to place on myself.

Whatever valve your husband choses to go with, will be the right choice, so long as he is comfortable & knowledgeable with his decision.

And please, take care of yourself too.... you have been thru so much.

Best wishes & prayers to both of you!

Hi Norma,
Thanks so much for the kind words and warm welcome. We feel that we've found a new home on this site. You have a great attitude and give us hope for the future.
~Christine

 

[Nicholas288]

Christine,
I am in the same position as your husband. I just turned 40 on 11/14 and have been tracking an aortic anuerism and bav for the last 5 years. My anuerism is now 5.0 and I have an appointement Dec 8th to discuss planning surgery. I am very active, I played colligiate and club lacrosse, have studied karate for 30 years and run 5 miles 4-5 times a week. I have gone back and forth on which valve I want but as of now it is mech. My thought is that the bio valves although lasting longer in general, wear out faster in younger active patients. I dont know if I want to depend on new technology being around by the time I need another operation so I will do what it takes to avoid another open heart. As routine as it has become it is still a major surguery with possible complications and recovery times that effect work,and demands on family. I have two young girls and I dont want to have to explain twice in their life that I cannot pick them up or do things with them.
I am not thrilled with meds but it seems that people get used to it and live very active lives.
Hope this helps
Nick

 

[LuckyGuy]

Hi Christine,

I am 46 years old and had two mechanical valves put in about 3.5 months ago. While I don't think anybody calls me athletic, I do like to keep active and hope to return to running soon.

I also chose mechanical because I did not want another operation (and recovery) looming in my future.

So far, the mechanical valves have been just fine. I can hear them (this is common, as you probably already know) but it's not too distracting.

Coumadin has been fine. I don't have a machine yet but my anticoagulation clinic is nearby and the apppointments are quick.

I had no qualms about being on a daily medication "for life" as I am already on synthroid every day forever anyways.

I suspect that many people who avoid mechanical because of the need for medication for life are shortchanging themselves, because once they are in the care of a cardiologist they often find themselves on a daily statin or beta blocker or baby aspirin, so end up having to think about medication every day anyways.