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Bill Hall

I have posted about my previous surgery in 2001, where my mitral valve was repaired and my aortic valve was replaced with a homograft. Now I have an aneurysm on the suture line where the valve was replaced. So far 3 surgeons have indicated that I need surgery for my aneurysm, so I guess I will be going ahead with that. In contrast however, my Cleveland opinion and my Arizona opinion thought my homograft needed replacement. My Fairfax, VA opinion thought I should fix the aneurysm and the valve was working fine. My Johns Hopkins opinion indicated that he thought the decision was personal, but made it clear that replacing the valve doubles the risk of the surgery.
So, they had a difficult time restarting my heart during my initial surgery. I have been asking questions about whether this would affect my decision to have the aortic valve replaced now or whether to wait until a projected third surgery. They all seemed to think my heart would restart and that it would not be a significant additional risk. I will have an angiogram done on Wednesday, 5/16 at Johns Hopkins in Baltimore. I hope there will be additional information that will help me make a final decision.
Bill
 
Bill ....... So really sorry to read this. What a position to be in.
I wish your doctors the wisdom and you the perserverance to get the best answers for your case. Please let us know what you learn from the angiogram.

Sending the very best thoughts.
 
Bill

It took me a year to decide to have valve surgery - and my case was simpler than yours. I hope you get a resolution.

Why do they think your heart will not restart following surgery ?

Do you have any CHD ?

Best Wishes

George
 
There is no doubt you are in a very tough spot and I'm so sorry for that. Which way are you feeling more strongly about? And why are you leaning that way? Those two questions together may help you to see which way you should go. Try spending some quiet time just clearing your thoughts and see if anything becomes more clear after that.

Best wishes.
 
Bill,

I wish I had the expertise to weigh in on the best decision, but I don't. I can just wish you the best as you sift through all the expert recommendations. Is the Fairfax opinion from the Inova heart people? I know I do think highly of them and if I ever had to have a re-op I would come back to them if possible. But my procedure was not the same as yours so I am not saying you ought to just accept their finding.

Hope you find a sound consensus and peace of mind. I wish you the best.
 
I am sorry that you have to make such a tough decision, it sounds like you have already made enough of them in the past.
I'm not sure I understand why replacing the valve doubles the surgery risks. Is it just that it takes more time or am I missing something? Doesn't getting a new tissue valve come with quite a few benefits as well?
I'm with Karlynn. Sometimes when you're not sure what your preference is, flip a coin and if it comes up yes and you say to yourself, well I was really hoping for a no, then you choose no because that is what your gut is telling you. (Did that make any sense?)
Anyway, I wish you wisdom in your decision.
 
Hi Bill,

I would ask the following questions of ALL of the prospective surgeons:

1. If I just get the aneurysm repaired, what are the chances that another aneurysm will occur in the homograft?

2. Why did I get an aneurysm in the suture line in the first place? Does this have anything to do with the quality of the homograft that I got.

3. If I don't get the valve replaced, how long would you predict that the valve would last?

4. Why does having bother the aneurysm repaired and the valve replaced double the risk?

If I was in your situation I would be leaning toward getting just getting rid of the whole homograft (including valve) and having it replaced with an on-x w/ dacron root or a bovine valve that has a dacron root sewed to it. Just my opinion though.

You need to ask the tough questions here.

Best of luck,

Brad
 
Bill,

Very sorry about the position you find yourself in right now.

GOOD LUCK with the angiogram next week.

Thoughts/prayers coming your way.....



Cort:33swm."Mr Monte Carlo.Mr Road Trip".pig valve.pacemaker
PICS:lego.HO.model.MCinfo.RT.CHD = http://www.chevyasylum.com/cort
"Enough is enough, I can't take anymore" ... Alabama ... 'Can't Keep A Good Man Down'
 
Thank you all for the support and thoughtful comments:
JKM - Thanks for the support.
George - Since they had difficulty restarting my heart during the first surgery, I am quite concerned that could mean weakness in my heart. No one has answered my question that way. If that was true, I would have the valve replaced during this surgery.
Karlynn - Thanks for your caring and excellent support. I have been leaning towards having the valve replaced, but I might change my mind. Maybe the angiogram will give me more information and make this easier.
Rob - Yes, the Inova heart people gave me the opinion. I think they are excellent and I trust they could do the surgery. I think I will be using Johns Hopkins because they are nearby my daughter in Baltimore.
Deanne - I don't know why it doubles the risk of surgery. I have been thinking about that and was hoping someone would bring up that point. You also mentioned a new tissue valve. I would have a mechanical put in, since I was afib for about a month after my first surgery. The coumadin was simple and painless and I want to avoid any future surgeries.
Brad - Those are great questions. I asked Cleveland about the first two (since it was their homograft), but got lousy answers. I think that since they proposed replacing the valve, maybe that answers your question. I will ask more about why the valve replacement doubles the surgery risk. I will ask your third question after the angiogram.
Cort - It is good to hear from you, I hope you are doing great.
Bill
 
briansmom said:
Sometimes when you're not sure what your preference is, flip a coin and if it comes up yes and you say to yourself, well I was really hoping for a no, then you choose no because that is what your gut is telling you. (Did that make any sense?)
Click to expand...

It works! Once I was trying to decide whether to finish my graduate degree or drop out of school--I had 2 young children, a marriage falling apart, and was depressed. My therapist suggested flipping a coin. It came out heads, finish the degree. She asked me if I wanted to go for best out of 3 and I screamed, "No". My gut told me that I needed to finish the degree--I didn't want to give up on it. And eventually I did finish it.

I'm not sure I would use it in medical decisions unless the doctors were evenly split and were telling me that there was no clear "right answer" which seems to be the case for you, Bill. I wish you the best!
 
Bill, we were there in 2001 - we still are. I feel for you that you have such a huge decision to make and wish you all the widom you need to make the right one. I always tell my children "I know you will make a good decision". You will, as well. Blessins............
 
Bill Hall said:
Cort - It is good to hear from you, I hope you are doing great.
Click to expand...

I am doing well, for the most part, thank you for asking :).

It's good to see you post, even though the circumstances aren't that great....



Cort:33swm."Mr Monte Carlo.Mr Road Trip".pig valve.pacemaker
PICS:lego.HO.model.MCinfo.RT.CHD = http://www.chevyasylum.com/cort
"Money can't buy happiness" ... Don Williams ... 'One Good Well'
 
Angiogram Yesterday

Angiogram Yesterday

Thanks for all the additional replies. I had my angiogram done yesterday at John Hopkins. It showed that my valves were not leaking and were in excellent shape. That will make it difficult to convince them to do the valve replacement during this surgery. I am already thinking about the third surgery. So, the aneurysm has not changed much, but I will find out more tomorrow. Anyway, the angiogram experience is not bad, but I do have some problems sitting still, so I did have some mental problems sitting still for four hours. After they finally let me walk, they asked me to do an MRI. Maybe some of you remember about my posting about the pacer wires in my body and how I avoided the MRI. So, I did go ahead with no problems. Actually, I did have more mental problems laying in that tube. They kept me in there for more than 90 minutes and it drove me nuts. My blood pressure was 143/79 before the angiogram and 156/104 after the MRI. Anyway, I plan to call the doctor tomorrow and am looking at the great questions and comments in the replies to this thread.
Thanks again - Bill
 
Bill,
I'm glad you got through your tests. 90 minutes in an MRI would be 80 minutes too long for me!
Good luck and please keep us informed.
 
Bill - I hope you get answers that will make your decision easier. Not having to make the decision would have been the best but since you know surgery will happen I want you to know that you are in my prayers!
 
Bill, you have my best wishes. You have a dragon to slay and it's so much easier to slay a dragon when you know for sure that it's a carnivore and not an herbivore, and that sooner or later it's going to come after you. I hope you get excellent medical advice for a wise and clear indication as to which way to go. Please keep us posted.
 
Angiogram Results

Angiogram Results

Here is an update to my situation. My angiogram showed my arteries are clear and the aneurysm has not increased in size since Feb, when I had the CT scan. The surgeon at Johns Hopkins suggested that I have the "do nothing" option, but we both consider that too risky. I am not really sure the "do nothing" option is the wrong way to go. He did agree to remove the entire homograft, and I was hoping for that to avoid a third surgery. So, the valve is functioning very well, with just mild to moderate leakage, so it might be a bad decision. He also said they might be able to embolise the pseudo-aneurysm, using coils to clot it off. He said that would postpone the surgery for maybe a few years. I will definitely take that option with more explanation, if they feel it is safe. I could use the time to be more sure about things. He also mentioned the dialated root (at 4 cm). I forgot that this is another area that requires the surgery if it increases. So, thanks for all the support and previous postings and the opportunity to explain my dilemma. I definitely appreciate that.
Bill
 
Thanks for the update. This has been one of the more perplexing situations that I've read here, since there is such a choice to be made with such variables. Did they tell you to avoid certain activities or give you other specific instructions during your wait? Take care.
 
All - I decided to take the embolize option instead of surgery. Here is the link:
http://www.wipo.int/pctbd/en/wo.jsp?IA=WO2000071197&DISPLAY=DES
I found two references on this site using the search function. One was from Ross about a friend in 2002 and another from ALASKA. Anyway, this site is so excellent for the information and support. Thanks! So, I have to have a very high resolution CT scan to identify exact locations and then the procedure something like a catherization. I would follow that with another CT scan to verify the fix.
Bill
 
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