After only 2 years tissue valve needs to be replaced with a mechanical valve

[Guest]

I just found out 2 weeks ago that I'm in severe stenosis again. Had a an echo and the result was critical - Dr asked me to come in urgently. He said the bovine/porcine valve did not take and since I'm young (52) I require more blood to pump and I need to replace with a mechanical valve. (had AVR May 2011 due to congenital heart murmur) Has anyone received such a diagnose? Re-operation? :mad2: I am doing all I can to stay positive but my family is pretty upset and want me to find another cardiologist and surgeon and possible malpractice since the Heart Surgeon promised that I would not have to replace a tissue valve for 10-15 years.

I have to go thru the same protocol of tests starting with stress test next Tuesday, followed by heart cath, etc.

Seriously, if anyone has experienced OHS - you can only imagine what I'm going through to hear this news. I know my life is in danger and I care enough about myself to do the OHS but it's only been 2 years. I have so much going through my mind. Will my health insurance allow a new cardiologist/heart surgeon? I did speak highly recommended attorney yesterday and wants me to get well as priority, ha - "save my life" and he promises to research this for me after I get better.

If there was no guarantee that the tissue valve would last 10 years - I would have chosen the mechanical valve so I wouldn't have to have OHS once again in only 2 years.

Appreciate hearing from anyone who share re-operation or knowledge of stenois happening as soon as 2 years from tissue valve replacement.

Thank you

 

[ElectLive]

Genine - So sorry to hear of this news. I have not personally experienced this, so can't begin to help from that standpoint, but did want to try and offer some thoughts on the related issues.

Tissue valves have probable lifespans, for the majority of patients, but unfortunately there are no guarantees for any individual patient. While it does happen, as others here have attested, no surgeon should ever guarantee any lifespan for a tissue valve in anyone, in my opinion. I say that from a patient standpoint, though, not from a legal standpoint. My surgeon gave more of an "expected" range, which was better, but even he probably said more than he should have. Again, as a patient, I would hope a surgeon would say something like this: "For patients in your age group, this percentage will not need to replace the valve until this general span of years" and not "this valve will last you this many years."

I'm not sure this is necessarily the issue, but while on the topic: one problem is that generally all tissue valves in use in recent years have not been around enough for actual lifespans to even be known. They are for the most part new and improved (hopefully) versions of older models, though, and for those there is longevity data. But no data is definitive for everyone. The predecessor of my own valve, the Edwards Perimount, has published 20 year results on file with the manufacturer, based on results of 267 patients - those who remained anyway...ie did not die of other causes. Anyway, in patients older than 60 (the youngest group in the data set), the freedom from explant due to valve deterioration at 15 years was around 85%. So a pretty good probability, and the type of evidence leading surgeons to say the things they do. But, very importantly, some patients in the group started needing to have their valves replaced as early as year 7. Very few overall, but enough to illustrate why there just are no guarantees. Notice, though, that is at year 7, a long way from 2 years...

Back to your specific issue, though, what valve did you receive? What did he specifically mean by the "valve did not take"? Has it truly already calcified (very rare at 2 years) to stenosis, or is your valve size small and possibly patient/prosthesis mismatch (PPM) maybe the more important factor in the stenosis? PPM seems to the more common reason for early tissue valve problems, so just curious.

I'm sorry I can't offer any first-hand experience, but hopefully there may be a member or two that can. Best wishes to you moving forward...

 

[VegasBAV]

I'm sorry you are going through this. I'd be very surprised if your surgeon guaranteed that the valve would last ten years. There are no guarantees with this sort of thing. Medical malpractice cases are very hard to win, and I think you should focus on getting better as your first priority in any event.

 

[Guest]

Thank you both for your kind words and support. Here's the best way to describe the surgeon's conversation. I sat in his office meeting him prior to surgery. I told him how nervous I was asking about the scar. He said, "have you met my 2 girls?" I assumed it was his children. He turned his monitor around and there were pictures of (2) 90 yr old woman who had the catheter VR by him on clinical trial. He was proud that they were sitting up day after surgery. He said by the time you have to have yours replaced in 10 years you won't have to have OHS. It wasn't a guarantee in writing. I told my cardiologist this was mentioned and he said he should not have said that.

After 2 weeks of stewing, feeling victim and powerless all over again, I'm starting to accept "these things happpen" as my Dr said. My life is threatened and I want to live and do what is necessary to live longer. I just needed to ask if this has happened to others and receive support. During the past 2 years I felt faint twice while driving and had to pull over. Today, I am breathless. Cannot scale a flight a steps at all. Have to sit down and catch breath. Dr took me off of any form of exercise. It's a scary time for me....why? Because my symptoms are worse than prior to my first OHS.

Thank you to both for your response, I will keep in touch with this forum for support as I just joined.

 

[ElectLive]

I'm short on time...but just wanted to also post two threads I could remember of members with early tissue valve failure: http://www.valvereplacement.org/forums/showthread.php?39503-Tissue-valve-failing-after-6-months&highlight= and http://www.valvereplacement.org/forums/showthread.php?39209-Replacement-valve-failing-why. One is younger, and one is older, and for the older patient, the member is actually the daughter. In any case, I"m not at all saying that either case will directly apply to your situation, but perhaps it may, so thought you might want to take a look at just in case...

 

[scott.eitman]

A redo is never fun, I can't imagine doing it again after only 2 years. Just like with a bioprosthetic, there really is no guarantee with a mechanical valve either. There are only statistics which show the typical number of years before a redo is necessary. However, I believe the risk of a redo is much lower. I have talked with many patients that are in for redos in the first few years for one reason or another.

I talking with surgeons, make sure to ask how comfortable they are with redos. Ask how many they have done. Ask what they may think the complications are. I understand getting through and around scar tissue to add difficulty.

Stay well
Scott

 

[Classtime Sailer]

Sorry that they have to go back in. I went through something similar. Aorta repair that went well. I was determined to keep my valve, but 6 weeks after surgery, I went in to return a Holter Monitor on a Thursday and when they listened to my heart, they wouldn't let me leave the hospital. I had my valve replaced on Tuesday when my surgeon got back in town. You know what to expect this time around. I don't know why you need a mechanical this time--If a tissue valve made sense 2 years ago, it might make sense now. You need confidence in your surgeon and If that means you get someone else, get someone else. It's just a roadblock. Get around it or over it or through it. Scary sh&$ for sure.

 

[Jkm7]

sorry...
posted to wrong thread

 

[texasmike]

Genine, very sorry to hear that you already need a new valve. I went through many of your emotions once I learned that I would need a replacement for what I was led to believe was a permanent fix. I came to realize, however, that surgeons and cardiologists don't want to dwell on the possible negatives, and instead dwell primarily on the positives. I suggest you keep that in mind when discussing your re-do. As with most things in life, we have to take full responsibility for most of what happens to us, and this is particularly true when considering valve replacement.
My advice would be to only deal with a major heart surgery center, and talk with at least two cardiologists and two surgeons. I also would read through the many posts on these pages. There is a lot of great information to be found! I would also be careful in allowing yourself to be a likely candidate for a third AVR.
Best wishes to you.

 

[pellicle]

Firstly Dear Genine

I am so sorry to hear of your poor performance with your tissue valve. I wish you all the best and wish you a good and smooth recovery.

Who will do the percutaneous replacements when they become routine?

I hope they become routine ... but at the glacial pace at which medicine works it is wise to accept there will be unforseen setbacks.

I work in IT, and the leading edge is often called the bleeding edge. Many a company has fallen on the sword of 'leading edge technology'

 

[ski girl]

Yikes Genine that is not good news! However your tissue valve beat mine - I got acute endocarditis and needed a redo 11 months after my first surgery. I too now have a mechanical. I agree with what others have said, get a second opinion and if you can, another echo.

Doctors who come up with such wishy-washy stuff as 'the valve did not take' are a bit suspicious, IMHO!

My second op was on an emergency basis so I didn't really have time to think about it, and I was so sick that the week was a bit of a blur. However having gone through it once, the fear of the unknown that we all have the first time is gone. You'll come through this!! Best of luck from down under.

 

[Rachel]

I too am so very sorry to hear this Genine! I’m coming up on my 2 year anniversary with my tissue valve – my echo is July 10 and I can’t tell you how many times that thought went through my head “what if it’s not okay and I have to re-do now” Unfortunately that’s not out of the range of possibilities.

I agree with others, in the meantime get a second opinion!

Keep us posted!

Rachel

 

[Guest]

I just want to thank all of you for your words of encouragement and wisdom. Yesterday I called my insurance and we went over new cardiologists in detail. I have my stress test on June 18th with present cardiologist and I have an appt on June 28th with new cardilogist in NYC. I will provide my echo and stress test to new Dr. Its difficult to read over posts as recommended. I guess this heart disease is more serious than my own perception. I am now getting more educated and learning to keep stress away. Part of me wants to just "TAKE A BREAK!" Its all so much to get up for work and know I'm heading back into OR. I am definitely going to ask about valve selection. These past 2 weeks have been a eye-opener. Any kind of resentment or hurt I had towards people has completely melted away and I am embracing and accepting people places and events. I did not have this freedom prior to diagnose. I'm starting to see what is truly important.

 

[Guyswell]

Hello Genine,

At age 41, I chose to receive a tissue valve (bovine pericardial) to avoid Coumadin. I knew that tissue valves didn't last as long in younger patients but I hoped the valve would last 15 years or more. I knew I would need a reoperation at some point. One year ago, I had my tissue valve replaced with a mechanical valve because the tissue valve had calcified and become critically-narrow after only 8 years. Prior to surgery, I had symptoms like yours.

We don't know why my body calcified the valve so quickly. The doctors and I concluded that there must be something about my metabolism that caused it. We concluded that another tissue valve would probably experience a similar early failure so it was better to go with a more permanent solution. Perhaps that will be the conclusion in your case too. I'm more aware now that for younger patients, the average life-span of a tissue valve is probably around 10 years.

I've had my mechanical valve and been on Coumadin now for a year. So far, it's been no big deal. It may be of little comfort at this point, but I can tell you my second surgery and recovery was easier than my first.

Good luck.

 

[Guest]

Thank you. It was nice to hear 2nd time around was not so bad. I'm new to the forum and I appreciate the support.

 

[pellicle]

Hi

Part of me wants to just "TAKE A BREAK!" Its all so much to get up for work and know I'm heading back into OR.

if you are at all able to do this (financially for instance) then it can only be a good thing. Personally I have found that a reduced work schedule was a benefit to me. More mental health days but enough work days so that I did not fall into laziness.

These past 2 weeks have been a eye-opener. Any kind of resentment or hurt I had towards people has completely melted away and I am embracing and accepting people places and events. I did not have this freedom prior to diagnose. I'm starting to see what is truly important.

a similar thing occured to a friend of mine when she was diagnosed with MS. I guess that sort of thing happens when we realsie that life is not about 'what thing' or material issues, it is about other more important things which are unrelated to money. I guess I was lucky having been born with this condition, having had so many operations in my childhood and thoughout my adult life, and had some of my best friends die. It has taught me to see the world differently.

I wish you peace

 

[kimcdougc]

Genine, acceptance is the hardest part. So, re-educate yourself and just get it done. I am 21 days post op now with my new on-x mechanical valve and the Coumadin thing has not been bad so far. Keep your chin up and know their is always someone worse off than you. So sorry you are having to go through all of this again so soon. I can only imagine.

 

[canon4me]

I would not completely rule out the percutaneous placement of another tissue valve. But it could only be done "probably" at a big research heart hospital like Cleveland Clinic. As I write this response now, I am laying in a motel in Cleveland awaiting my plane ride home today. They are doing them here in a trial for both healthy and at-risk patients and having great results. At least a telephone inquiry to the nation's/world's top-rated heart hospital may be worth it.

 

[Guest]

Thank you VegasBAV - I agree. The attorney I spoke to said the exact same thing. "Focus on getting better" I felt so powerless in that moment.

 

[Guest]

EL - Appreciate your words. Truth is - I have been such a caretaker of everyone else in my life and putting myself last. I have learned so much since May 28th. Hasn't been easy for to face how much I haven't accepted my heart disease. I actually feel grateful today - its like God had to get my attention. I'm starting to set boundaries and take complete care of myself. I am eating so much better and letting go of the negative thoughts. It's easy to eat good, but its changing my thoughts that has brought me so much more love for myself and my heart disease. As sad as this sounds, I don't know what kind of valve. I do have every bit of information in my file, but life has been just that - put it in a file and not think about it. Well now its time to think of myself and quite frankly for the whole rest of my life. My caregiver is respecting my boundaries and is supporting me and what lies ahead. I'm going to another Cardiologist for second opinion on June 28th at NYU Langone Institute. My surgery was done at Morristown Memorial Hospital. My stress test and heart cath may require urgent AVR. So its quite humbling for me right now. I just wanted to thank you again for your thoughts. -Genine