mechanical vs tissue aortic valve replacement

[geebee]

Hi DJL,
Welcome. I won't give you any advice on valve selection. I will however leave you with this thought. It is usually true that people who are insecure with there valve selection have a tendency to voice there opinions more strongly and defend there selection more vigerously than thoes of us who are confident in our selection and don't feel the need to defend ourselves. Think about that. Good luck.

Sorry - I think this is an unfair statement (and probably mostly untrue), unless I misunderstand your use of the word "defend".

 

[dlangton]

A difficult decision hardens to concrete

A difficult decision hardens to concrete

It is an undeniable fact that, once someone has made the important decision about what type of aortic (or whatever) valve to have implanted in his or her chest, that person is forever committed to his or her choice and, not surprisingly, tends to advocate it. I therefore recuse myself from any such testimonials or advocacy, though I have my own preference based on what I chose when confronted with the confusing array of choices, and I wish we could all resist the impulse to be knee-jerk partisans for one type of valve over another until an advance in technology settles the question with scientific authority.

 

[Bina]

Hello I am new here. My son is 15 years old and scehduled for aortic valve repair on july 12 with Dr leaonard Bailey at Loma Linda Universaty in California. We were asked to make a decision on a plan B IE replacement if the the repair is not possilbe. I was wondering if anyone had some pro and cons on the mecanical valve vs tissue valve. We just want to learn every thing we can before making this dession with our son. He has always been a very active kid until this last year when his Doc put him on limmited activivty and we are concerned with the blood thinning drugs. Is any one willing to share thier thoughts? I was also wondering if there any young adults or teens that maybe able to give some words of encouragement for him. He has been having a preety rough time emotionally.

Let's get back to what is important: How is your son doing?
His surgery is next week....we'll all be wishing and praying for you

 

[geebee]

I actually believe most of the members on this site are for each person making the right choice for him or her. We all provide our opinions and experiences so that all the information is available. There have been many times I have suggested someone would be better off with a tissue valve even though a mechanical was the right choice for me. Each person's lifestyle, future decisions and age all must factor into their choice. Often providing alternative information is viewed as advocating a particular valve as superior or a better choice when all that is desired is complete information be made available.

 

[dlangton]

I humbly bow to Geebee's greater wisdom and experience.

 

[HarleyM]

I'm 36 now. Very active, shave with a reg razer, have a few drinks often, have no limitations, free dive, offshore fisherman, hunt(climb up trees), ride atv's and utv's, install flooring, clean flooring textiles, did I mention VERY active, well you get the point. Oh forgot, I take 12 mg of coumadin per day for an INR of 2 to 3. MY OPINION is, mechanical(ON-X) all the way and I wouldn't look back at his age. I don't like the remark about defending one's valve choice. NOT TRUE! Your son is young and will wear out a tissue in 7 to 10 maybe sooner. FWIW, That's what my Doc's told me. I have DRS reports of me that back up what the ON-X valve claims. Who knows how this valve will show in 15 to 20 years. I'm sure giving it a good workout. LOL The man behind it also helped develope the other big name mechanicals so he is not new to the valve business. Good luck with your decision and remember a good decision is one that is well thought out and researched.

 

[Karlynn]

I'm 36 now. Very active, shave with a reg razer, have a few drinks often, have no limitations, free dive, offshore fisherman, hunt(climb up trees), ride atv's and utv's, install flooring, clean flooring textiles, did I mention VERY active, well you get the point.

I think I just burned off several hundred calories just reading about your active life.

Correcting error and myth shouldn't be mistaken for defending a particular valve choice in order to convince one's self they made the right choice. It's just the responsible thing to do. All valve choices have had erroneous information posted about it that really shouldn't be left to stand uncorrected. I'm about 13 years past needing to defend my choice. But I do feel a certain responsibility for correct information.

djfranklin - I would just counsel you to ask as many questions as you possibly can to make yourself feel as close to comfortable as possible with the plan for your son's VR (notice I said "close" ) Even though he is going to a well known hospital and seeing well know physicians, if what you are hearing doesn't feel right to you - ask for further explanation. Best wishes to your son and you. You are your son's primary healthcare advocate - it's your right to have as much information as you request. Any choice gives him a new lease on life.

 

[bridget]

AV Replacement

AV Replacement

Hi there. Im new here and just trying to find my way around. I just saw your post and thought " I know something about that" My daughter was born w/ a disease that causes tumors in the organs (non cancerous that we know of) and had to have a tumor removed from her LV when she was 4 days old. That surgery damaged her heart pretty bad, created a VSD, MVP and sever damage to the AV. WE THOUGHT things were going good until last year when she went into CHF.. Ah... life took yet another turn. We were given the option of doing a ROSS *where they swtich the AV w/ the PV and us a donor valve in the PV position* risky in anyone, let alone a 3 year old. But when they went into her heart they found the PV was too damaged to sustain the function, so our plan B was to do a replacement of the whole valve root up.. They used a tissue valve (homograft) that was supposed to be "perfect" for her. They didnt want to take the chance w/ mechanical valves because she has seizures and they didnt want her on blood thinners.. Ok, so we didnt get all the info that we shouldve, couldve etc..We only knew our daughter was dying and we had to do something. So we listened. Only AFTER the surgery was I able to do more research and thought OMG what have we done. Ive found that tissue valves for anyone younger really isnt a good thing. Hind site thinking back I remembered thru the fog that we were in the surgeon telling me the valve would last MAYBE 1-5 years because a younger person does so much more then a person who's lived their life. 9 mths post op we found that the "perfect valve" is showing signs of stenosis, narrowing in areas. We just went back to the doctors 3 weeks ago and they are now saying "We mightve messed up" HUH??? Even though the mechanical valves are risky for my daughter they are now thinking that really is the only way to go. My opinion is to research all that you can, dont leave any stone unturned.. KNOW what your getting into before your son goes into the OR. Feel free to msg me if you'd like to learn more about my daughter or visit her website www.caringbridge.org/pa/arianna
Bridget

 

[Karlynn]

Hi there. Im new here and just trying to find my way around. I just saw your post and thought " I know something about that" My daughter was born w/ a disease that causes tumors in the organs (non cancerous that we know of) and had to have a tumor removed from her LV when she was 4 days old. That surgery damaged her heart pretty bad, created a VSD, MVP and sever damage to the AV. WE THOUGHT things were going good until last year when she went into CHF.. Ah... life took yet another turn. We were given the option of doing a ROSS *where they swtich the AV w/ the PV and us a donor valve in the PV position* risky in anyone, let alone a 3 year old. But when they went into her heart they found the PV was too damaged to sustain the function, so our plan B was to do a replacement of the whole valve root up.. They used a tissue valve (homograft) that was supposed to be "perfect" for her. They didnt want to take the chance w/ mechanical valves because she has seizures and they didnt want her on blood thinners.. Ok, so we didnt get all the info that we shouldve, couldve etc..We only knew our daughter was dying and we had to do something. So we listened. Only AFTER the surgery was I able to do more research and thought OMG what have we done. Ive found that tissue valves for anyone younger really isnt a good thing. Hind site thinking back I remembered thru the fog that we were in the surgeon telling me the valve would last MAYBE 1-5 years because a younger person does so much more then a person who's lived their life. 9 mths post op we found that the "perfect valve" is showing signs of stenosis, narrowing in areas. We just went back to the doctors 3 weeks ago and they are now saying "We mightve messed up" HUH??? Even though the mechanical valves are risky for my daughter they are now thinking that really is the only way to go. My opinion is to research all that you can, dont leave any stone unturned.. KNOW what your getting into before your son goes into the OR. Feel free to msg me if you'd like to learn more about my daughter or visit her website www.caringbridge.org/pa/arianna
Bridget

Bridget - Welcome! I know it's hard to convince a parent not to feel any guilt or regret over the decisions we make for our children (I'm the valve patient - thankfully my kids are not), but you made the best choices you could with the information you had at the time. Her bad heart was fixed. Now you have time to step back and do research into what your next moves will be when that time comes.

I'd like to recommend our wonderful member Al Lodwick, and his website www.warfarinfo.com. He is the best expert I know of when it comes to Coumadin (warfarin). He is a pharmacist, a registered anticoagulation specialist and has run his own Coumadin clinic in Colorado for years. He has managed warfarin for all ages and would probably be of some help for you in finding out about warfarin management for a child who has seizures. I'm sure they are concerned about head injuries should the seizure cause your child to fall.

 

[geebee]

Bridget,

I want to welcome you and say I am glad you found your way here but very sad for the reason. I will add your daughter to my prayers.

As Karlynn said, you are now armed with more information and the ability to make some choices. Try not to look back because the one thing you wanted to do was accomplished - your daughter is alive. That very fact will allow you to move forward in hope and be more active in the decision making.

You should try to PM our member Gijanet. Her Katie has had 5 surgeries and now has a St. Jude mechanical valve. I am sure she would be happy to pass along the wisdom she has gathered over the years. Also, Emma has a little girl with an ON-X valve. Both children are extremely active and doing well.

Please feel free to ask questions and/or just come on for support. We will help you in any way you need.