My heart valve choice

[DanHill]

Hi! My name is Daniel. I'm 34 years old, and just had a valve replacement surgery done at the VA hospital in Miami.(I've been out of the hospital for 3 days now.) My condition was a regurgitating bicuspid aortic valve, a birth defect that until now was undetected. I just wanted to let everyone in this forum know how much I struggled with the two valve options, and what my decision was. I opted finally (at the last second, practically) for the natural valve. Everything I had researched on Coumadin was disturbing, and I did a LOT of research in the 7 months before my surgery. As far as I could see, the only benefit to a mechanical valve was no second surgery, but I finally felt that the drawbacks to taking this medication far outweighed the one advantage. How ironic would it be if I got the mechanical valve, only to have my life shortened anyway by getting into a serious accident and bleeding to death, hitting my head and hemmorraging, etc... My surgeons said that I could expect a good 12 to 15 years out of my natural valve, and quite possibly never need to have it replaced at all. My surgeons initially made a good case for the mechanical valve, but, after speaking with them, and presenting my research findings to them, concluded that the natural valve indeed had many advantages over the mechanical valve that needed to be taken into consideration. The one thing they did agree on, is that if I did have a second surgery, it would be more complicated, and recovery would be longer, than the first surgery. I'm willing to take that risk.

 

[JimL]

Welcome, Daniel, I'm glad you've joined us! Valve choice is a very personal decision, and no one can quibble about that. But I'm glad you mentioned the coumadin -- a reminder that I need to take mine soon.
I look forward to your contributions to our various discussions.

 

[Ross]

Hi Dan

My only objection to that train of thinking is that people get this notion that they can go through this surgery time and time again. Some people can, others cannot. I would rather see someone go through it one time and hopefully never have to do it again. I'm not barking at you here, so please don't take it as such. What I'm saying is, people will risk there lives for no other purpose then convenience to stay off of Coumdin which really isn't that huge of a deal to begin with.

I've been through surgery 2 times now and I can tell you for a fact that unless God sees otherwise, I'd never make it through a 3rd. I just want people to realize that while this surgery may seem highly perfected, it still carries a significant risk of mortality when repeated.

 

[Granbonny]

Hi Dan

Hi Dan

Welcome to our wonderful valve replacement site..Wow..just 3 days home and typing that nice long post.. I was so fog-headed ..I could not talk on phone at 3 days...At least 2 weeks before I could think how to type and spell..plus shoulders and back hurting. so that tells me..you must be a very healthy age 34 year old..who can go thru surgery well..So, you shouldn't have any problem 10-15 years down the road..with anothery surgery...But do consider a mechanical then..You don't want to have a 3rd one done. I'm coming up 2 years March 15th..taking coumadin has never been a problem for me. No bleeding..or brusing..and a very active age 63 year old Grandmother..with a very active age 11 year old Grandson...He can barely keep up with me.. It is people who decide to have a tissue past age 50 that concerns me..They tend to forget..their care takers for a few months..also age with them... I would never want my family to give up their lives for me again..I am so lucky to have a hubby of 38 years..that did all the cooking, driving and caring for me..The first 3 months post op..and still. when I have those bad days..and yes. you will.. Major surgery..this VR...takes a long time to get those muscles, cells, bones, ect. back in place.. Your body will tell you when you over-do things. Welcome again..Bonnie

 

[ALCapshaw2]

Welcome to our world Dan,

It sounds like you are doing GREAT !

I'm curious about a few more details you didn't mention, namely WHICH "natural" valve did you get? (Porcine, Bovine, Homograft?)

Also, I'd be interested in WHICH Negative Aspects of Coumadin caused you to exclude the mechanical valve. It might be beneficial to other / future researchers to see your list of negative effects.

Best wishes for a continued smooth recovery,

'AL'

 

[DanHill]

Thanks everyone!

Thanks everyone!

Thank you for your responses all! It's great to know I can talk to others who have experienced the same thing I have. I've got a quick question: anyone experience back and shoulder pain while in the hospital and shortly after? The pain I experienced was excrutiating- I thought it might just be the mattresses.
As for my decision regarding the natural valve, it was the hardest decision I've ever had to make. Not more than two weeks ago I was doing research on the internet regarding my valve choices, when tears of frustration started streaming down my face. Both choices had seemingly equal advantages and disadvantages. What it came down to in the end was a purely physical, gut feeling that I really wanted the natural valve, even though my surgeons initially pushed for the mechanical valve. When I explained my reasons to the head surgeon, he nodded his head and said that I had made an informed choice, and that I would be happy with my new valve. I understand, of course, that if I had chosen the mechanical valve, he would have said the same thing. It really came down to my peace of mind. I indeed felt a great peace going into surgery that I had made the decision that was right for me. If I do need a second surgery in 10-15 years, I will get the mechanical valve. Two surgeries are do-able (I hope), but three are masochistic! Hopefully by then there will be a Coumadin alternative. Thank you again all!!

Sincerely,
Dan



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[Ross]

Dan I'm going to combine this thread with your other one to keep things together.

As for the back and shoulder pain--Perfectly normal. We have all had it and it stinks for a pretty good time afterwards. It's because they nearly have your shoulders pinned together during surgery and it stretches the muscles big time. Best thing to do is have someone massage it 2 or 3 times a day and keep working the muscle group. It can be really painful.

Hopefully we'll have that Coumadin alternative in the next 3 to 5 years.

 

[bvdr]

Hi Dan,

Welcome!

I hope you are happy with your choice for a long long time. You sound like you are doing very very well.

Just remember that there are risks with everything and sometimes it happens that a person with any type valve replacement goes into atrial fib and ends up taking coumadin anyway. If that happens, please don't despair.........you would adjust to coumadin.

In the same vein of thought, sometimes people who decide on mechanical valves so they never need another surgery end up on the table again anyway. So either way there are risks.

I'm glad you found our forum and hope you spend some time with us especially while you recover.

 

[Granbonny]

Betty

Betty

Other than Gisele..who had a mechanical MANY years ago.an old one..and had it replaced with a tissue a few months back..WHO else on valve replacement has had their mechanical replaced?I know of No one..and I have been on VR for almost 2 years.....Have I missed a post..Don't think so..with over 2,000 posts. I know you are a nurse..Can you give more information about what you know about mechanical patients having their valves replaced? Mine just takes a licking and goes on ticking.. forever I hope..so I can chase the old men around in the Nursing Home. bonnie

 

[LUVMyBirman]

Few members in the past have required the replacement of their mechanical. Can't put my finger on it at the moment.Dating back to Hanks email list many moons ago.

Will pick my brain here..and see if I can come up with something more concrete for you.

Christine Mayhew comes to mind. She had multiple mechanical VR surgeries. Oh, and our very own Les Barrett. There was also a woman named Linda Baez (sp?) that I corresponded with 3 or 4 years ago. She had multiple St. Jude Silzone replacements.
Unfortunately...she is no longer with us. Very sad situation. Especially so that we were exchaning emails on a regular basis. Feel like I lost a dear dear friend.

Have to agree with Betty. Let's count our blessings...because there are no guarantees.

 

[Kenny F]

Hey, Daniel!

I appreciate your post quite a bit. I had convinced myself that mech was the way to go, but after listening to my surgeon I too had a 'gut' feeling that a tissue was the best way for me to go. I ended up with a homograft. Because of a-fib I briefly ended up on coumadin.

I think the bottom line for me was I wanted to get it done, heal, and not look back. I feel if all goes well, 6 months down the road I am not cognizant on an hourly basis about my valve. I would say I was 'healed', even if if only for 10-20 years.

On some bad days after surgery I thought 'What have I done?' but all in all, I am glad I did what I did.

I do not put a lot of stock in something new and exciting happening in the next 15 years. It seems that the heart community is satisfied with the procedures as they are. Also, with the complexity and location of valve/root surgery, I can't believe it will be done laparoscopically.

I am 4 weeks out now. The back pain was a brief and very unpleasant experience, like all the other ones! Just when you lick one period of aggravation a new one pops up. Sleeping in bed took care of most of my aches and pains.

And, if this baby makes it 20 years (according to my surgeon, that is an 80% potetiality) I'll be 65 - another one should do it! If it doesn't last 10 years I will have to re-think it. In the mean time, I live!

 

[Ross]

Bon there are no guarantees for us mechanical or for tissue folks either. Going mechanical is likely to not have to be replaced, but again, no guarantee. Tissue you know for sure has to be replaced at some point in time. I only stated what I did because the risk of another surgery with a mechanical is very low. We sure don't want people going through this more then they have too.

 

[Heather Fisher]

Hi Daniel,

I had a Ross procedure 4 months ago at age 47. So far so good. The hardest thing was the valve choice. My surgery went well also and it was no big deal to recuperate. I knew going in that I would probably have to have a repeat surgery. I also considered mechanical but because of lifestyle considerations, I decided upon the path I did. Valve choice is a very personal decision. No decision is wrong because they all save your life.

Next time through I will be ready to go with a mechanical but I felt the risk was worth it at this time. Right now I am enjoying each day and eating green salad!!! (It's one of my favorites)
Keep coming back to let us know how you are doing. Best of luck and best wishes for your recovery!

Heather

 

[Kenny F]

You know, all this talk made me do some research. My own surgeon is still out with knee replacement, so I will not see him again until January.

I looked into homografts specifically, and interestingly the Cryolife valve from Georgia (and I do no know if that is what I have - i have requested my records) is used 75% of the time. They do not know how long it lasts - it has only been used 15 years. In children the failure term has been shorter, but in adults it is still an open question.

On the ClevelandClinin.org site it says of the homograft "may never need replacing". Anybody done any deeper research?

 

[RickKiem]

My sister had a mechanical mitral valve (St. Jude) that was placed in 8/95. This one failed in 3/2000. It was replaced with something other that a St. Jude(I can't remember what). This valve failed three months later and she received another St. Jude's. I think it is important to note that the two failed valves did not have any problems mechanically, they both failed due to scar tissue that interfered with their proper operation. She barely made through both of the last two surgeries.

We have to remember that there are other things that can happen that might require another surgery. Unfortunately there are no guaranties. Regardless of whether you have a tissue or mechanical, on Coumadin or not, you must be aware of yourself at all times so that if you do have a problem you get a chance to address it.

Rick

 

[ALCapshaw2]

Hello again Dan,

Regarding the back and shoulder pain, that is pretty normal for OHS. MASSAGE worked better than pain pills for me, especially on the long muscles that run from near your shoulder down to your waist, just inside each shoulder blade. For inexperienced caregivers, a heated vibrating massage disc can be used by anyone with good results.

Your hospital should have given you a booklet with some recommended stretches and shoulder / arm exercises. If not, ask your surgeon, or visit a Cardiac Rehab Class and ask the nurse for a copy of their recommended arm and shoulder stretches and exercises. I found the 'arm cycle' machines in Cardiac Rehab REALLY helpful (after 6 weeks or so).

A body pillow for sleeping, or a recliner, may help for the first few weeks while your sternum begins to heal.

'AL'

 

[bvdr]

Hi Bonnie,

I hope yours keeps on ticking forever too! I wasn't referring only to having a mechanical valve failure but bypass surgery or another valve going bad as well. Hopefully not, but it is a possibility that I may end up needing another valve job at some point in time.

As already mentioned, mechanical valve failure isn't usually the fault of the valve but of tissue overgrowth or a clot that impedes it's function. I think our bionic parts will most likely last us the rest of our lives.

 

[Ross]

Mechanicals can fail, but it doesn't necessarily mean GAME OVER. Some of the things that may lead to replacement are, infections that create a home in the suture ring, blood clots, tissue over growth interupting normal function etc. Now an all out valve failure would be GAME OVER, though I have yet to hear of one. I'm sure if I dig hard enough, I can find one somewhere.

 

[Nancy]

The only absolute GAME OVER that I know of with a group of valves that failed was with some of the Bjork-Shiley valves. The welds on the struts broke, and those patients died suddenly. My husband has a Bjork-Shiley valve which is 26 years old. It was not of the same design, although he did have to go to Lahey Clinic and have special x-rays to check the integrity of his valve, many years ago. As a result of a class action, Bjork-Shiley gave all of its valve patients lifetime membership in Medic-Alert. They are no longer making valves in the US.

Other valves have had sudden deaths. St. Jude Silzone valves are the first ones that come to mind. Some patients did have sudden death, but not from valve structure failure, but from blood clots that formed on the valve which was supposed to prevent that. But I'll let others talk in much more detail about Silzone valves.

Any valve has the potential of developing deadly complications. It is a foreign object which is implanted in your body. It doesn't matter if it's tissue or mechanical. But so far it is the best way we have to keep valve patients from dying. Years ago, people with valve problems didn't make it.

I would say that valve failure is rare, even with the Bjork-Shiley failures, not every one failed.

 

[Christina]

Dan,

My mechanical valve had to be replaced after 11 days with another mechanical because of a blood clot. The bloot clot was caught in time because I had the sense of going back to the hospital and not ignoring my symtoms; I was feeling so poorly. This saved my life. The redo was not because the valve failed.
Valve choice is very personal and only you can make it. You have to be comfortable and happy with your choice.
My surgeon adviced strongly against multiple surgeries. I've done it twice so far and hope the valve will last a lifetime. It took me a long time to recuparate and I hope never to have to do this again.

Wishing you a quick recovery.