help with valves choise

[mac]

just got back from 2 days at Mayo. Had another Eco to confirm that I have sever aortic stenosis. My surgeon is adamant about using a mechanical valve, since I had radiation to my chest back in 71 for Hodgkins. Said he doesn't want to see me back in 10 years or sooner. He said he has had tissue valve people back sometimes within a year because of the complications due to healing and etc from issues with tissue valves placed in people who have had radiation damage. I would like to hear some other opinions from people who have had radiation damage and have tissue valves I really do not want to be on blood thinners the rest of my life, but also the second operation 15 years down the road is very high risk with radiation damaged hearts. Also is it really that hard to regulate blood thinners?

 

[Philip B]

Choices & Doubts

Choices & Doubts

Others may weigh-in with different opinions, but it sounds like your doctor has not only gave you advice, he has given you some very good reasons to opt away from a tissue valve. There are certainly no guarantees that his concerns will play out if you opt for a tissue replacement as there are no guarantees that you may not encounter some complications if you go with a non-tissue alternative. Life seldom gives any of us any guarantees.

You went to the Mayo and sought advice there. Do you trust the doctor you saw or not? If you have doubts, it may be a good idea to seek the opinion of another doctor.

Maybe it's not the norm, but I managed to find a cardiologist and surgeon that I trusted immediately. In spite of this, I still worried and had lots of questions. Both my cardiologist and surgeon were okay with that and worked with me.

-Philip

 

[skeptic49]

Mac, welcome to VR. There are lots worse thing than being on anti-coagulants...spend a little time around here reading and you''ll be surprised. There is lots of info here to debunk some of the common myths about ACT therapy. It's not as bad as some people make it out to be. We have some resident "experts" who can show you the ropes when it comes to regulating your INR.

Best wishes,

Jim

 

[marie]

just got back from 2 days at Mayo. Had another Eco to confirm that I have sever aortic stenosis. My surgeon is adamant about using a mechanical valve, since I had radiation to my chest back in 71 for Hodgkins. Said he doesn't want to see me back in 10 years or sooner. He said he has had tissue valve people back sometimes within a year because of the complications due to healing and etc from issues with tissue valves placed in people who have had radiation damage. I would like to hear some other opinions from people who have had radiation damage and have tissue valves I really do not want to be on blood thinners the rest of my life, but also the second operation 15 years down the road is very high risk with radiation damaged hearts. Also is it really that hard to regulate blood thinners?

I did not have any radiation treatments but just my story. I had a tissue valve in Jan. 08 and it's already going bad on me. I am now on coumadin with a tissue valve and facing another surgery. So I will certainly not get 15 years out of my tissue valve. This is rare but it does happen. I will get a mechanical valve on the next surgery.

So consider everything before you make your decision and keep us posted.

Good luck

 

[neil]

hiya mac,agree with phil on this one,your doc has given you advice and if you trust him well go with him,after all hes the main man,i got tissue as didnt want to be on warferin but you can have tissue and still be on it,same as you can have mech and need another op,but in your case would defo lean towards mech

 

[dick0236]

....I really do not want to be on blood thinners the rest of my life, ...... Also is it really that hard to regulate blood thinners?

It is not difficult to be on anti-coagulation therapy. I have found warfarin to be a very predictable drug. If you can learn to take a pill a day and test routinely, people normally do not have problems......and it helps to be a little careful around chain saws.

"Blood thinner" is not a correct definition. Anti-coagulant drugs only slightly slow down the clotting of blood....they do not thin the blood. "Blood thinner" has long been the popular definition, even by doctors, because that definition is simple, graphic and easily understood.

 

[Lynlw]

I was just wonderring how old you are.

 

[jax]

I myself would opt for the mechanical from what you have said. It will last longer than a tissue valve. But ultimately it is your choice and if you trust the doctor I would follow his advice. It may take a few months to regulate the coumadin but they have you figured out then it should be alright after that. All you have to remember is to keep your lifestyle the same. So if you are used to having a lot of salads than continue along the same way. I've been on coumadin for just over 4 months and it is really not a big deal. Especially if you can get a home-testing machine so you can test your inr at home. I'm still waiting for mine. They finally got me regulated a month ago and once that happened I was bumped up to testing once a month at the hospital. Just have to remember to take a pill everyday. Which I am sure you will have other medication anyway. Please let us know what you decide.

 

[Philip B]

Thinners?

Thinners?

Please remember that the term "blood thinners" really isn't accurate when describing the meds many of us take to avoid throwing clots. This said, we understand the term and what you mean.

Again, opinions may vary, but I believe I can state with some accuracy, the majority of us here who take coumadin have few problems with dosing to stay within our perscribed ranges. Yes, on occasion someone will report having a problem with maintaining a stable INR, but it doesn't seem like the norm.

Many of us do the home INR testing thing and have had very positive experiences with it.

Speaking personally, the biggest problem I've had with taking coumadin is remembering that I need to take it. Yeah, I feel so normal after receiving my St. Jude implant 2.5 years ago, I don't even think about it most of the time.

-Philip

 

[Cris N]

I agree with what the others have said... if you trust your doctor follow his advice - especially with his experience with radiation patients. And, as far as anticoagulants... really not that big of deal to maintain.

 

[mac]

3rd generation On X valve

3rd generation On X valve

thanks for all the input. To answer some of the questions, I'm 56 years old. very active lfe style, hunting, fishing, kayaking, rock climbing, mountainbiking...etc, so did have concerns about anti clogs. the on x valve seems pretty good from what I've read. My Dr is Dr Suri at Mayo cardiology, he has a pretty good resume. (understatement) so I trust him.
One other question, I am by no means a big boozer, but I sure like a good micro beer once in awhile, I even sometimes brew my own. Is it now over? Does my lifestyle changes include not having the sweet taste of aBelgium beer cross my lips ever again?

 

[Lynlw]

thanks for all the input. To answer some of the questions, I'm 56 years old. very active lfe style, hunting, fishing, kayaking, rock climbing, mountainbiking...etc, so did have concerns about anti clogs. the on x valve seems pretty good from what I've read. My Dr is Dr Suri at Mayo cardiology, he has a pretty good resume. (understatement) so I trust him.
One other question, I am by no means a big boozer, but I sure like a good micro beer once in awhile, I even sometimes brew my own. Is it now over? Does my lifestyle changes include not having the sweet taste of aBelgium beer cross my lips ever again?

You can still drink moderately, check out the anticoagulation forum

 

[ALCapshaw2]

Welcome Aboard Mac...

We have 20 some Post Radiation Treatment Heart Valve Replacement Survivors among our VR.com membership. You can find their posts by doing a Search (see the Blue Line at the top of the page) for Keywords "radiation" and "Hodgkins". Most are Hodgkins survivors, but a few Breast Cancer treatment survivors also.

I know of only ONE Radiation Treatment Survivor who received Tissue Valves, a 70+ year old Female who also had other co-morbidities who received Bovine Pericardial Tissue Valves in both the Aortic and Mitral Valve Positions. Unfortunately I don't remember her name....
xxxxx1234. Her daughter is the VR.com member

Members whose Surgeons were familiar with Radiation Damage often reported that the Surgeon told them in advance that he wanted to use Mechanical Valve(s) due to the Scar Tissue Issue and increased risk from repeat surgeries.

I am not aware of any Surgeon at Mayo who uses the On-X Valves yet. Mayo (and other Hospitals) often put their Mechanical Valve Business up for Competitive Bid and select only one or two for their 'standard offerings'.
Cleveland Clinic just started using On-X earlier this year. Dr. Lytle is the "Radiation Guru" at CC. Dr. Petersson is the most prolific On-X user at CC. Emory University Hospital (Atlanta) is the sponsor of the On-X NO / LOW AntiCoagulation Studies and their surgeons are well acquained with those valves.

If you have read my posts in the Valve Selection Forum, you know that I am favorably impressed with the technological advancements offered by the On-X valves.

You need to learn more about living with / on Anti-Coagulation. I recommend starting with the "Stickys" at the top of the Thread List under the Anti-Coagulation Forum. Also read AL Lodwick's informative website www.warfarinfo.com He is a retired anticoagulation clinic Director and Certified A-C Care Provider.

That should keep you busy reading for a while!
Feel free to ask more questions as they arise.

'AL Capshaw'

 

[Cooker]

Mac ... welcome aboard! ... I agree with the posts that anti coagulation therapy (ACT) is not the bogeyman ... I have had no issues with ACT ... I have a St Jude mechanical and am as pleased with it as some are with the On-X ... the St Jude has a great proven track record as I am sure the On-X will in the years to come ... my best advise is not to freak out about ACT, do your research so that you can discuss your valve choice intelligently with your cardiologist and surgeon ... remember that neither mechanical or tissue are a guarantee of no further surgery but the mechanical gives you a much better chance of avoiding future replacement of the same valve ... keep in mind that most here are not medical professionals, there is a wealth of good information and support here and this forum was, and is, of great value to me and the thousands that have accessed it ... I wish you the best.

 

[olefin]

Welcome to the forum.

My surgeon recommended a mechanical valve even with me having a history of bleeding duodenal ulcer. He said he didn't especially like the situation but at age 56 he was sure a pig valve wouldn't last my lifetime. Fortunately I've had no more ulcer problems.
There is more valve options today but I'm not familiar with those.

And as far as taking warfarin I didn't give that much though. My wife had taken warfarin for a year after having phlebitis and warfarin was no problem for her.
I had an active lifestyle before surgery and still have today.

Good luck with what ever you choose.

 

[Lily]

Hello Mac and welcome to the site. I realize that, with your radiation history, your medical situation can be different, even more complicated, from many others here. What might work for someone with healthy heart tissue might not be the best idea for someone with radiation-damaged heart tissue, depending of course on the state of your heart tissue.

So finding a special surgeon with great success in treating others with your similar medical diagnosis is a great idea. (Which you likely have done.) Also, for what it's worth, there are a number of members here who consulted with more than one excellent and highly recommended surgeon. I even consulted with three. But you were asking about ACT (anticoagulation therapy).

I have read that there is a genetic test (I thought that it was only a simple, though maybe expensive, blood test) a person can take that might give them a better idea of how they may react to ACT. That might help to allay your worries.

Best wishes for all to go well for you .

 

[Superbob]

We are blessed to have these life-extending options, but there are no warranties given any of us. Sounds like your doc is giving you good advice. If you go mechanical, you will find a lot of good advice here about dealing with coumadin. I went tissue because of my age at the time of surgery. The device itself is working great but now I have an aortic aneurysm in the ascending arch unrelated to the replacement. Those are just the breaks.

Make the best choice for you and forge ahead. You should do well.

 

[mac]

thanks!!!

thanks!!!

Welcome Aboard Mac...

We have 20 some Post Radiation Treatment Heart Valve Replacement Survivors among our VR.com membership. You can find their posts by doing a Search (see the Blue Line at the top of the page) for Keywords "radiation" and "Hodgkins". Most are Hodgkins survivors, but a few Breast Cancer treatment survivors also.

I know of only ONE Radiation Treatment Survivor who received Tissue Valves, a 70+ year old Female who also had other co-morbidities who received Bovine Pericardial Tissue Valves in both the Aortic and Mitral Valve Positions. Unfortunately I don't remember her name....
xxxxx1234. Her daughter is the VR.com member

Members whose Surgeons were familiar with Radiation Damage often reported that the Surgeon told them in advance that he wanted to use Mechanical Valve(s) due to the Scar Tissue Issue and increased risk from repeat surgeries.

I am not aware of any Surgeon at Mayo who uses the On-X Valves yet. Mayo (and other Hospitals) often put their Mechanical Valve Business up for Competitive Bid and select only one or two for their 'standard offerings'.
Cleveland Clinic just started using On-X earlier this year. Dr. Lytle is the "Radiation Guru" at CC. Dr. Petersson is the most prolific On-X user at CC. Emory University Hospital (Atlanta) is the sponsor of the On-X NO / LOW AntiCoagulation Studies and their surgeons are well acquained with those valves.

If you have read my posts in the Valve Selection Forum, you know that I am favorably impressed with the technological advancements offered by the On-X valves.

You need to learn more about living with / on Anti-Coagulation. I recommend starting with the "Stickys" at the top of the Thread List under the Anti-Coagulation Forum. Also read AL Lodwick's informative website www.warfarinfo.com He is a retired anticoagulation clinic Director and Certified A-C Care Provider.

That should keep you busy reading for a while!
Feel free to ask more questions as they arise.

'AL Capshaw' (see my profile under Community, Members List - we share some common 'experiences')

thanks, I really appreciate all the help from everyone, ya, lots to read and digest.

 

[Marguerite53]

Hello and welcome to this fabulous place!!

Sounds like you are very good at collecting reliable information. I had only aortic stenosis to deal with (no radiation, etc.) so at age 52 I chose tissue. Had I had any complications I would have gotten more than one surgical opinion (even if they are god-like at Mayo). And just for grins, I got 2 opinions for myself anyway!

Please be aware..... there are several people (if not many out there beyond this forum) who have gotten a tissue valve and for some reason or another are put on warfarin (coumadin) for the rest of their lives anyway!!! You cannot escape your fate if that turns out to be what you are handed.

The joyous news is that regardless of any small lifestyle changes you may have to make after this surgery -- you are awake!! breathing!! laughing!! honoring your glorious life!!

Personally, if I were you, I would get another surgical opinion (those are always very eye opening as each physician comes from a different place -- not to mention hospital or preferred valve-producing company). If you don't have time or money or insurance coverage, personally, I would definitely listen to your surgeon!!

Good luck and keep us posted.

Marguerite

 

[Philip B]

Active Lifestyle?

Active Lifestyle?

Again, I can only speak from personal experience, but I've experienced no problems maintaining an active lifestyle with a mechanical valve and the coumadin that accompanies it. I golf, kayak, hike, ski, sail, bicycle (mtb & road) and drink alcohol in moderation. I drank in moderation before I had AVR surgery. My activities and habits haven't changed.

I did give-up mountain climbing, but that was the result of a fall, two broken knees and an agreement with my wife before we got married. That agreement was made long before AVR surgery. She often wishes she had made a longer list of banned activities.

Hopefully your experience will give you the same results as mine and you'll be able to resume your regular lifestyle following surgery.

-Philip