HELP!! New member needs advice to help dad in need of an AVR redo

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Alan in Cali

My Dad had a congenital heart defect (bicuspid aortic valve?) which required replacing his aortic valve with a porcine valve. The replacement surgery occured in Virginia around 16 years ago. There were complications following the first surgery (fluid buildup) which resulted in a pericardectomy (they stripped the pericardium). That did not stop the fluid buildup and after one of his lungs collapsed he was flown from VA to MGH in Mass where upon opening him up, the surgeon (John Wayne (no kidding)) found an absess behind his heart. It was removed and all went well.

16 years later his porcine valve broke (one of the flaps(???) broke off. He'd been followed by various cardiologists for several years and had avr but they wanted to put off the redo due to the scarring from the first procedure(s). Now it needs to be done. His avr has worsened and he has trouble breathing and lacks energy. His diastolic blood pressure is hovering between 35 and 40 so we need to move fairly quickly. He is here with me in san francisco but the surgeon at our hospital won't operate because he says its too risky.

There are some complicating factors. Dad caught Hep C from a blood transfusion he recieved in 1976 (GI surgery). This led to chirrosis which in turn led to Liver Cancer. Thankfully, Dad's liver cancer was caught very early and thus far appears to be under control (the cells are dormant).

His liver doc has described Dad's liver as high functioning and put him in a "childs class a" category. Childs class A means that the liver disease is fairly mild. Dad was (until this new mishap) a liver transplant candidate.

An open heart operation carries around a 30 percent mortality rate
which the surgeon desrcibed as high. According to the docs. replacement surgery means putting him on a heart/lung machine which places strain on the liver. The surgeon thought the risk of liver failure plus the risk of bleeding out was too high to justify the surgery.

Instead, his cardiologist suggested waiting until the right sized percutaneous valve comes out (in October) and seeing if Dad could qualify for the clinical trial. That could happen in October.


We are devastated but respectfully disagree with the suggested options. Waiting is risky. Right now his heart is strong. There is no cororanry artery disease of any kind. Still, with the porcine valve already broken and detriorating, we have to act fast.

We have contacted another surgeon (Dr. Vincent Gaudiani) and are set to meet with him in about a week. G-d willing he will do the surgery. I hear good things about him. I'm also trying to get in contact with the Cleveland Clinic's nurse coordinator to see if we can get a long distance consult.

I was stunned when i came across this group and it looks like a valuable resource. If any one has some suggestions or insights, we are in desperate need of your help. Other hospitals, suggestions etc. would be much appreciated.

Help me save my Dad!
 
welcome, I am not the heart patient, my son is so i know how you feel when it is a family member.
Justin has had 4 OHS so had alot of scarring problems so we put off surgery as long as possible until the benefits out weighted the risks. Justin heart was actually fused to his sternum w/ scar tissue so they had to be very careful cutting his sternum so they didn't accidently cut his heart at the same time.
I would get a 2nd opinion, but honestly IF it was me, I would probably wait the 2-3 months to try to have the cath repair. by the time you get all the consults ect it would probaly be close to that time before he would have sugery as long as it is not an ER and the risks of surgery AND recovery time is so much easier on the person recovering from a cath than having their chest cracked open especially w/ the scarring. Lyn
 
Alan,
Welcome to VR. com - this is the place to be for answers. I don't have a lot of experience with AVR but, I do have one question. Is your father's valve actually broken right now? If so, I cannot believe a surgeon would not consider that a reason for surgery. Maybe I am not clear as to what is happening but it sure sounds like an emergency situation to me.
Also, is the 30% mortality due to the liver issue? If so, I would ask for more info on that end. If his liver is as good as described, he may be in better shape than a lot of us who have undergone OHS.
I will hope that your next surgical consult gives you the answers you are seeking. I agree that surgery should be done but, then, I am not a doctor.
I know there are quite a few members who have had surgery in the California area (a lot at Cedars Sinai in LA). I am sure you will hear from them.
Praying for your dad and your family.
 
Further info

Further info

Thanks guys,

we are getting one. i've got all my dad's reports and am shopping them around. The nurse coordinator at the cleveland clinic called and is sending me a list of docs i need.

Does anyone out there have any exeprience with reops on patients with liver disease?
 
I just wanted to wish you well. We understant what you are going through right now my husband's (see his details below) Dad is a heart transplant recipiant 15 years strong, but going in for the pericardectomy/valve replacement on Friday at the Mayo in Rochester. He is 60, and also a liver/pancreatic survivor X 2 years. He battled liver adenocarinoma with chemo, and has not been in remission exactly, but he has been very very stable for 2 years. He was an incredible help to my during my husband's surgery last Sept. Do you have specific questions about the liver disease?
 
Nattani.

not specifically about the liver disease but about whether or not a person with chronic liver disease is an appropriate candidate for reoperation on the aortic valve (no i don't expect a diagnosis or reccomendation on the board). i'm interested in hearing people's experiences on reoperation, especially when they are classified as "Childs A" and there is a likelyhood of significant "mediastinal scarring".

I know my Dad would benefit from a percutaneous type treatment but with a diagnosis of "severe aortic insufficiency" I don't know if we can wait till October.
 
Ross said:
Two words-SECOND OPINION!

And an additional 2 words: Mayo Clinic.

Maybe there are other places equally as equiped, but I know there are a lot of people who head to Mayo and have successful procedures when other doctors have turned them away do to risk.

I get a hard and fast "release date" on this new valve that the doctor is speaking of to see if October may come and go with no valve yet and your father's heart continue to have damage done to it from the bad valve.

This is very tough spot for your Dad and family to be in, and you have my prayers. Keep us posted and anytime you need a shoulder for support, just come online, someone is always around here, no matter what time of day or night.
 
Such Support

Such Support

Thanks

I agree - who knows if this new valve will go into production in October or if my dad would even qualify for the clinical trial. I just can't believe that he is not a viable surgical candidate. Yes, there are risks but absent intervention - - well you know

This board is a g-d send
 
Alan-it would seem that whether or not a person is a candidate for AVR is case by case. I never would have that they would be doing a valve replacement on my father in laws transplanted heart. The fact the he has a liver 9and pancreatic) cancer history is just on the side lines. He has no choice, no other alternative. I don't know what my FILs liver class is. I had not heard of catagorizing like this before. One of the transplant surgeons was not at all excited about doing his surgery, but they have all the of his doctors working together on this at the Mayo. His cancer team is working directly with the transplant and valve team. For the last 3 weeks we waited, and things are only getting worse. Keep us posted...
 
Alan: Dr. Gaudiani performed an aortic valve replacement for me in 1999. Very good outcome. I developed enocarditis early last year, probably because of a cut finger and this year in January the valve sprung a leak, probably because of the endocartitis. I spoke recently with Dr. G. and will ask him to do the reoperation. I have confidence in him and I hear from other docs that he is the the right surgeon for valve replacements.

Hope all goes well with your dad. I am a new member of this forum and look forward to further exchanges.
Ron S
 
Have you gotten to talk to the Cleveland Clinic Doctors yet? I'm almost 100% positive that they will say it's doable.
 
Thanks Ron,

The buzz on Gaudiani is very good and he has agreed to do the surgery. We still, however, have to wade through the opposition of his cardiologist who now wants us to wait until January in the hopes of doing a percutaneous procedure. Gaudiani and his hepatologist think that waiting is not a particularly good idea.

Meanwhile, Dad's mood is not terribly good ( no one's would be) and its painfully clear that he is very depressed. He eats very little and is cranky, tired and listeless (some of which is probably physical).

He needs an antidepressent but he refuses to take them All of this is so overwhelming.
 
Yeah he could be waiting for nothing and going downhill for no reason too. I think it should move forward pronto, before he gets anymore run down.
 
Alan,
What's the resistance to antidepressants? Maybe he would be willing to take a "serotonin booster." In other words, would he be more comfortable with a biochemical explanation as opposed to the lable or stigma of 'depression'?
Ron
 
At University of Chicago Hospital there is a guy that specializes in high risk heart surgery, Dr. Jeevanandam, 773-702-2500. Good Luck
 
Alan,

SSRI (Selective Serotonin Reuptake Inhibitors) Paxil, Luvox, Prosac, Zoloft, etc... may help and also are prescribed for anxiety and stress which your Dad certainly has. They are designed to correct a chemical imbalance (that chemical being Serotonin). Some work faster than other so check with the docs.

Sounds like your Dad's heart is struggling (which makes sense if the aortic valve is missing a leaflet or a portion of the leaflet). Don't know if you have adequate explanation from the cardiologists regarding the risks or damage (or potential damage) to your Dad's heart due to the leaking aortic valve. How long ago did the leaflet break off? Has there been change in the physiology of your Dad's heart since that point? The rapidity of any changes would seem to dictate the necessary timing for the surgery. I would put pressure on the doc that wants to wait to explain why that is OK since your Dad obviously is having symptoms - unless you are ready to ditch him.

Cleveland Clinic would be a great place to talk to (I don't know their backlog or typical response time). They are the premier valve center in the US. They might be worth the trip for a high risk surgery. They may also have insight into the timing of a supposedly soon to be released percutaneous valve.
 
For some reason I'm just seeing this thread.

Wherever your dad goes, he needs to have a surgeon with LOTS of experience doing re-do's and HIGH RISK surgeries. The Cleveland Clinic is probably the best choice with Mayo Clinic next. I'm not familiar with west coast hospitals or surgeons.

The cath replacement idea is sound, but with a "Broken Porcine Valve", I'd be looking to replace it ASAP, probably with a Mechanical Valve or maybe a Bovine Pericardial with the latest 'treatments' to prolong it's longevity.

Have you heard back from the Cleveland Clinic yet?

'AL Capshaw'
 
Checkout Stanford

Checkout Stanford

Since u r in SF Bay Area, did you try talking to Stanford Surgeons?. I had my AVR/Aneruesym repair by Dr.Craig Miller 5 weeks ago, . He is a great surgeon and I know one of the member had a reop with him as well.

Good luck.
 

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