Convinced My Tissue Valve has FAILED

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malibu82

Well-known member
Joined
Jan 5, 2010
Messages
478
Location
Libertyville Illinois
Yes, it's me again. Negative Nancy. Debbie Downer.....I don't know any other names.

Anyway, it has been in the back of my head all along that my valve is failing. Why else would I be lightheaded 24/7. Why is my blood pressure in the 50s? Why am I tired?


So, I just thought after seeing all these ENT's and Neurologist's and other doctors that I will just compare my echo's for fun.

Bad idea.

Here is my little comparision sheet. Please read it! Thank you!


FEBRUARY 22 , 2008 (found out about having a bi cuspid valve, not told about aneurysm)

LEFT VENTRICLE EJECTION FRACTION RATE: 65%
VALVE PEAK TRANSVALVULAR GRADIENT: 23 mmHG
VALVE MEAN TRANSVALVULAR GRADIENT: 13 mmHG
*mild aortic stenosis*

DECEMBER 14, 2009 (after two full term pregnancies)

LEFT VENTRICLE EJECTION FRACTION RATE: 55%
VALVE PEAK TRANSVALVULAR GRADIENT: 62 mmHG
VALVE MEAN TRANSVALVULAR GRADIENT: 26 mmHG
AORTIC VALVE AREA MEASUREMENT : 1.4 CM
*moderate aortic stenosis*

JANUARY 7, 2010

LEFT VENTRICLE EJECTION FRACTION RATE: 55%
VALVE PEAK TRANSVALVULAR GRADIENT: not on report
VALVE MEAN TRANSVALVULAR GRADIENT: 28 mmHG
AORTIC VALVE AREA MEASUREMENT : 1.2 CM
*moderate aortic stenosis*


MAY 21 , 2010 (STILL IN SURGERY, AFTER OPERATION WAS CLOSED)
LEFT VENTRICLE EJECTION FRACTION RATE: 60%
VALVE PEAK TRANSVALVULAR GRADIENT: not on report
VALVE MEAN TRANSVALVULAR GRADIENT: 11 mmHG
AORTIC VALVE AREA MEASUREMENT : not available (number not there if you have no stenosis)

MAY 24, 2010 (DAY RELEASE FROM HOSPITAL AFTER SURGERY)
LEFT VENTRICLE EJECTION FRACTION RATE: 60%
VALVE PEAK TRANSVALVULAR GRADIENT: 17 mmHG
VALVE MEAN TRANSVALVULAR GRADIENT: 8 mmHG
AORTIC VALVE AREA MEASUREMENT : not available (number not there if you have no stenosis)



HERE IS MY MOST RECENT ECHO FROM OCTORBER, 6 MONTHS AFTER MY SURGERY.

OCTOBER 27, 2010
LEFT VENTRICLE EJECTION FRACTION RATE: 55%
VALVE PEAK TRANSVALVULAR GRADIENT: 52 mmHG
VALVE MEAN TRANSVALVULAR GRADIENT: 26 mmHG
AORTIC VALVE AREA MEASUREMENT : 0.9CM


Can someone explain to me why my valve is WAY WORSE NOW then it ever was before?

Why is the cardiologist not worried? Why the heck would she still tell me to see a neurologist for my lightheaded problem after seeing these terrible results?

So finally I am so sick of this I called the surgeons office Friday, and the nurse of course said she doesn't know why the cardiologist wouldn't be worried, and that she will meet with her tomorrow (monday) morning and give me a call back.

I am so sick thinking I will have to go through surgery again so soon.
I don't regret getting a tissue valve, I regret not choosing to go with the head surgeon who may have fit me with different valve. Maybe that would have changed things.

What do you all think?
 
So, so sorry to read your post and to think that you are going through such a troubling time right now too! Never seems to end, does it my dear?

I hope that you hear from your cardio's office soon and get some much needed answers to your concerns. My prayers are with you and keep your faith. God is awesome and HE will come through for you!
 
Hi Malibu,
Sorry that you are going through this. I feel for you.

Just a few random thoughts as I read this:
1. First, I would ask if they could do another test to confirm your AVA measurements and gradients as echos are operator dependent and not always 100% accurate (perhaps a TEE instead).
2. Since my surgery last year, my valve gradients have gone up (Ao max PG 35.7mmHG and Ao mean PG: 20.3 mmHg) , but apparently they are still within the 'norm' of gradients for a tissue valve. You may want to ask about what the norm is for your case.

I hope you can get some answers soon and that this is just an anomoly.
Sending you a virtual hug.
 
thanks everyone :)

i was thinking about maybe asking about getting a TEE as well. i will for sure ask about what is the norm for my case. i just feel like no matter what the "norm" is, it has changed really quickly in 6 months. now it's been almost 2 months from that last echo, what if it has changed even more?

i will let you know what the cardio says. i'm sure they will call back in the next 2 weeks! they are so SLOW!
 
My first reaction to your post was that if your Cardio isn't concerned about those drastic changes,
she mush have her head in the sand.

My second reaction was the same as yours: Call your SURGEON (which you alread did).

IMO, Surgeons have more experience and expertise with Valves and Valve Issues than most cardiologists.
I'd be inclined to let your Surgeon take the lead in this situation, or at least be included in the loop.

I see from your profile that you received a Bovine (presumably Pericardial) Tissue Valve.
Do you know which company manufactured your valve?
Did you get a "Valve Card" describing your Valve with Model and Serial Numbers?
From my perspective reading these forums, most early failures have come from Porcine Valves but early failures of Bovine Valves have occurred from what I'm told by a Cardiothoracic Nurse I know.

'Even If' the numbers in your latest Echo are somewhat erroneous, the magnitude of change will still be of concern. Another standard Echo would not be out of order. Perhaps with your Surgeon's Favorite Echo-Tech. Then you can have a discussion about whether to get a TEE or when / if you should get another Valve Replacement. You may want to start thinking about whether you would want yet another tissue valve?

One more thought. We have had one (maybe two) members whose stitching started coming undone due to poor tissue (and possibly poor stitching by a surgeon who did not know how to recognize weak tissues and how to deal with them). I always recommend that BAV patients with aneurysms find a Surgeon with LOTS of experience dealing with BAV *and* Connective Tissue Disorders. The Head of the Connective Tissue Disorder Group at the Cleveland Clinic is Dr. Svensson. Dr. McCarthy at Northwestern near Chicago (formerly at CC) would be another good option. These kinds of issues are definitely best handled by very experienced and knowledgable SURGEONS.

'AL Capshaw'
 
ALCapshaw2 said:
IMO, Surgeons have more experience and expertise with Valves and Valve Issues than most cardiologists.
I'd be inclined to let your Surgeon take the lead in this situation, or at least be included in the loop.



'AL Capshaw'
Click to expand...

I agree with Al, that it would be a good idea to consult with the surgeon on this one if possible.
 
thanks again everyone!

i put in a call to all of my cardiologists and the surgeons on friday, and today my local cardiologist called back. he was in the hospital and able to look up my echo's. he said my lightheadedness wouldn't be caused by my valve not functioning correctly. which is hard to believe but whatever.

he did say something about the gradient being a 2 and now a 3 which i dont know what number he was talking about. anyhow it concerned him so he is having me schedule an echo at his office (they have a large practice) and he will be at the echo to look at everything in depth and closely.

still waiting for the surgeons office to call me back from northwestern.

al, thats the mistake i fear i made. i could have gone with mccarthy, but instead i went with his partner who i was told specializes in the aneurysm repair.

i have an edwards life sciences 23mm pericardial tissue valve with that TFX stuff.
 
Jackie, sorry to read of the worry and strain you are going through. PLEASE try to demand answers to your concerns as you are your strongest advoacate and also PLEASE try to enjoy the kids and family as best you can through the holiday season.

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hug.gif
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I can understand your frustration. I underwent a mitral valve repair operation in November of 2007. The repair only held up for about one year. I had chosen repair over replacement because I didn't want to be chained to coumadin forever. Anyway in December of 2009 I decided to get the surgery again; this time a replacement with a titanium valve. The valve is great, but I hate the trips to the coumadin clinic. I hope your surgeon can figure out the best way to move forward. Good luck, Kevin
 
malibu82 said:
thanks again everyone!

i put in a call to all of my cardiologists and the surgeons on friday, and today my local cardiologist called back. he was in the hospital and able to look up my echo's. he said my lightheadedness wouldn't be caused by my valve not functioning correctly. which is hard to believe but whatever.

he did say something about the gradient being a 2 and now a 3 which i dont know what number he was talking about. anyhow it concerned him so he is having me schedule an echo at his office (they have a large practice) and he will be at the echo to look at everything in depth and closely.

still waiting for the surgeons office to call me back from northwestern.

al, thats the mistake i fear i made. i could have gone with mccarthy, but instead i went with his partner who i was told specializes in the aneurysm repair.

i have an edwards life sciences 23mm pericardial tissue valve with that TFX stuff.
Click to expand...

So glad you got a reply from the cardio, Jackie and that he is scheduling another Echo soon. I'll be keeping you in my prayers!!!
 
kfuzz123 said:
I can understand your frustration. I underwent a mitral valve repair operation in November of 2007. The repair only held up for about one year. I had chosen repair over replacement because I didn't want to be chained to coumadin forever. Anyway in December of 2009 I decided to get the surgery again; this time a replacement with a titanium valve. The valve is great, but I hate the trips to the coumadin clinic. I hope your surgeon can figure out the best way to move forward. Good luck, Kevin
Click to expand...

Kevin: Have you looked into acquiring a home monitor?? Many of us have them and they are a Godsend! Look into it if you haven't!!
 
Malibu, I know you got this tissue valve with the intention of wanting to have another child, knowing that that valve would have to be replaced sooner . Is it too soon to get on with that pursuit? I realize that may not have been your immediate plan, but I know you don't want to get another tissue and then get a mechanical, do you? Just something to think about, but I'm sure you already have.

Kim
 
Malibu, thinking of you. It's good to hear you Dr's are taking this seriously.

Be sure you write ALL your concerns down on paper for all your Dr's. DO NOT LEAVE until ALL of your questions are throughly addressed.

Hugs
 
Good luck, Malibu. I'm so sorry you are having difficulties. Hopefully, you'll get answers soon. Please keep us posted.
Seems like the stress would raise your bp, though (not funny, I know, but I'm trying to make you smile). :)

Hugs-
Tracy
 
Malibu, I may be one of many who has looked at this thread but just really doesn't know what to say other than I'm really sorry to read this and hope your valve is in much better shape than it may appear right now. We care.
 
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