BAV Newbie Here

[Lynlw]

Hey Guys,

So I just wrote an update but for some reason it didn't post and I couldn't retrieve it (ugh). Anyway here I go again. So I had my surgical consult late last week and it went well. Dr. Conte was great, very nice and straight forward. Going into the consult I had almost made up mind to go with a tissue valve. Dr. Conte told me a lot about the mechanical valves and made some great points regarding them. Some of his points for going with the mechanical were: Possibly not having to have surgery again, a new ACT (Direct Thrombin Inhibitors that are to be approved by the FDA) which allows you to not have to monitor your blood, and no real diet or activity restrictions (except full contact sports).

I had originally thought that I would go with a tissue OHS and then a mechanical in 10+ years through a TAVI method. However, if I were to do this then I would have to get a smaller valve since the mechanical would be placed inside the tissue. And I am not really sure how the smaller valve would effect me.

So now I have decisions to make. How many of you guys sought a 2nd opinion? I really hadn't thought about getting another opinion, but I think if ever someone was to get a 2nd opinion OHS surgery would be a good reason to.

Thanks in advance!

Hi I really dont understand the plan you had, When you said IF you got a tissue valve now, in 10 or so years your would get a mechanical by TAVI. Since that isn't really an option and I dont image they would be able to put mechanical valves in by cath any time soon (meaning a decade or more like decdes) So IF you got tissue valve now and wanted a mechanical valve when this one needs replaced, that would have to be done by opn heart surgery for the forseable future. Since they have to squish the new valve into the sheath they use to place them by cath. SO if you got a tissue now, most likely it would be replaced by another tissue valve if you wanted TAVI.

We had a few opinions for Justin's surgery, but his was pretty complex. Since you live close to some great heart hospitals like fairfax that would probably be closer anyway, I think it would make sense to get another opinion

 

[JeffF]

Thanks Lyn. I read that they were doing mechanical via TAVI in some cases (maybe misinformed), and I was told that in 10-15 years it would be more common place. That was my hope anyway. I just don't want to be chained to monitoring my blood, and being a "fragile father".

I also read on Cleveland Clinic's website that they will do a virtual 2nd opinion if you send them all of your files (600 dollars which is cheaper than flying up there). So I might explore that option. At this point I think I am just going to put the mechanical in. If there is chance I don't need another surgery I think it is worth it. It is just a giant decision I have to make (nerve racking).

I am not opposed to checking out Fairfax Hospital I have heard good and bad things from heart patients there. Maybe I am just reading too much in the so called "rankings".

Thanks for the response, I really appreciate it.

 

[Lynlw]

Thanks Lyn. I read that they were doing mechanical via TAVI in some cases (maybe misinformed), and I was told that in 10-15 years it would be more common place. That was my hope anyway. I just don't want to be chained to monitoring my blood, and being a "fragile father".

I also read on Cleveland Clinic's website that they will do a virtual 2nd opinion if you send them all of your files (600 dollars which is cheaper than flying up there). So I might explore that option. At this point I think I am just going to put the mechanical in. If there is chance I don't need another surgery I think it is worth it. It is just a giant decision I have to make (nerve racking).

I am not opposed to checking out Fairfax Hospital I have heard good and bad things from heart patients there. Maybe I am just reading too much in the so called "rankings".

Thanks for the response, I really appreciate it.

I've never read or heard, they were even working on mechanical percutaneous valves, so I can't imagine them being common, tissue TAVI should be relatively common then.
I never give advice on what choice someone would be happiest with, but will say make sure it is something you really want to do either way, it definatly isn't choice you want to look back and sencond guess whatever you decide. Some people will do all they can to avoid REDOs others feel just as strong as avoiding mechanical valves and Coumadin, or any anticoagulants

IF your interested in getting opinions without going there, I personally would call the centers/surgeons you are interested in getting opinions from and ask What you need to do to get an opinion from them. Usually they will want copies of all the tests you've had recntly, atual test on CDs or DVDs not just the reports. Many will do it for no charge, or just charge insurance. It certainly doesn't hurt to ask.

Altho If you want to make things move quickly it might be easier/quicker to do alot of the legwork yourself. Fill out the forms Get copies of the tests and mail them yourself instead of waiting for where ever they are to take care of it.

PS If you know where you red about mecchanical percutaneous valves I'd really like to read it

 

[JeffF]

Lyn, I'll look and see if I can find it. When I asked the surgeon about it he didn't seem too shocked or say it wasn't being done? I've only been reading for a little over 3 weeks so my knowledge is much more limited than yours...

 

[Bobby81]

Jeff,

Thanks for sharing about your Johns Hopkins consult. Did the surgeon say what type of mechanical valve he prefers using?

 

[camgough]

Hi Jeff, my recovery has been ok. I am 16 months post op, can do most things I did before, but still not to the same level. I find my HR still rises quickly with evercise, but this may just be a result of getting back into better shape. I am back to work full-time as a police officer so that was a big accomplishment for me. Good luck with your decisions!

Cam

 

[Marguerite53]

I decided to go for a second opinion just because, like you said.... it's heart surgery!! I was glad I did. What I got was affirmation that my instinctive, semi-educated choice was shared by another phenomenal surgeon. For some people, there is confusion if the surgeon's have differing ideas. But for me, it was great. Also, just having some other sort of impartial person looking over your history is mind-settling. I've heard that Cleveland Clinic is "all about tissue", but I really don't know. I'm a face-to-face, shake your hand kind of person and that is why I chose to see a second surgeon. I was 52, though -- that's a big age gap when you're talking valve choice.

Good luck
Hang in there!!!!

Marguerite

 

[JeffF]

Thanks everyone. I am going to send my file to Cleveland Clinic for the 2nd opinion and sound piece of mind. As far as valve selection goes I am really torn. One day I want to go mechanical the other I am leaning toward tissue.

I did put myself on the Johns Hopkins surgical schedule. November 29th is DDAY (tentatively).

T-Minus 3 weeks... Ahhhhh!

 

[Lynlw]

Thanks everyone. I am going to send my file to Cleveland Clinic for the 2nd opinion and sound piece of mind. As far as valve selection goes I am really torn. One day I want to go mechanical the other I am leaning toward tissue.

I did put myself on the Johns Hopkins surgical schedule. November 29th is DDAY (tentatively).

T-Minus 3 weeks... Ahhhhh!

You might want to call CCF and see how long it would take or if you should write anything letting them know you already have surgery schedualled someplace else so it could be fast tracked or something like that. Especially if you dont already have copies of everything they will need.

since you are on the schedual at Hopkins some times it can take a while to get an opinion, you should decide wether you would wait until you hear from CFF or go thru with it on the 29th wether you get someone at CCf opinions or not.

We've had to do that before, both have another surgeon squish us in for another opinion since he was on the schedual in a couple weeks at another center. Then another surgery we decided tto jus go ahead with the surgery even tho a hospital we were getting a 2nd opinin from hadn't finished going over everything yet.

 

[JeffF]

Hi Lyn, thanks for the response. I requested all documents from my cardio and surgeon on Monday. I spoke to a resource nurse at CC that said it would take 5-7 business days to complete the review. If worse comes to worse I will have to push back my surgery date. I am hoping to get everything back before the 29th (optimistic I know). I just didn't want to have the Hopkins schedule fill up. I really want to get the surgery over with and the recovery to begin.

Fingers crossed,

Jeff

 

[Lynlw]

Hi Lyn, thanks for the response. I requested all documents from my cardio and surgeon on Monday. I spoke to a resource nurse at CC that said it would take 5-7 business days to complete the review. If worse comes to worse I will have to push back my surgery date. I am hoping to get everything back before the 29th (optimistic I know). I just didn't want to have the Hopkins schedule fill up. I really want to get the surgery over with and the recovery to begin.

Fingers crossed,

Jeff

Did you just request the documents or copies of the actual tests (echo, MRI cath whatever you've had done) on CD? FWIW a couple times we asked the docs were were getting opinions from if they wanted to wait for the reposts to be written of OR rather have all the cd of sent since they were done and send the written reorts later if they werent done yet. most prefer to look at the cds/dvds themselves so had us sent everything we had then and the reports went later.
You might have to keep on top of the place to make sre everything was sent. when e were in a hurry we usually just picked everything up ourself and sent it overight

 

[JeffF]

Hey there,

So I was just reading my update from last week and I completely forgot to tell you guys that my aortic valve is not bi-cuspid. The cat scan showed 3 leaflets with one leaflet damaged. The doctor said it could be a congenital defect or one from an infection. I am sorry for not updating it earlier (I thought that I had). The days have been going by so fast. I am hoping the damage was caused by an infection so that my daughter and unborn child do not have a risk of having it as well.

Thanks again for all the support.

 

[JeffF]

Lyn, I did request the CAT and ECHO on a CD-ROM. I also requested all files associated with my file. Let's hope that they deliver them the way I requested. I am hoping to receive them either tomorrow or Monday so that I can get everything together and FedEx them out. Thanks again for giving me so much information, I just hope I can get this completed before the 29th. If not I guess I'll have to push it back.

What a roller coaster this is...

 

[Nancy jane]

Hi Jeff. I'm mrs newbie here - And similar situation. But I did a lot of investigating - talking with this group is so great - u will learn a lot. Once I heard that the mech valve sometimes could be heard clicking - man I opted for tissue so I can moo or oink. Not scheduled til feb. so I had an opportunity to vett the dr & etc. I too wanted to go to CC. But then I was talked out of it as there are great drs here - so I just today made my decision - the dr mentioned we could decide on which valve the night before. They must carry them with them. Oh hi - need a valve ? Any way guess I'm venting. Keep your sense of humor. Put your procedure on the calendar & u will get a lot of well wishes. Again ths ovum is wonderful. Also there is a great book called patients guide to heart valve surgery by Adam lick. On amazon
.com. I highly rec this - as a guide. Ok. Enuf. Best of luck Nancy Jane.

 

[Nancy jane]

Hi all. While I'm till 3 mo away from "it". Feel as tho I made big decision today in selecting the dr - enjoyed reading about Jeff in dc - and learn from each posting. Lyn u r great ! Thx for all your help. As I get closer I know I'll be in here more often. Right now I just want to get it done & feel peppy again.

Quick question. I was informed today by a post op call I made -To a reacted apmv patient that the heart lung machine goes they the groin ? I may be a blonde but that is not even close to my heart. Any ideas ? Or was I told wrong. .

 

[Lynlw]

Lyn, I did request the CAT and ECHO on a CD-ROM. I also requested all files associated with my file. Let's hope that they deliver them the way I requested. I am hoping to receive them either tomorrow or Monday so that I can get everything together and FedEx them out. Thanks again for giving me so much information, I just hope I can get this completed before the 29th. If not I guess I'll have to push it back.

What a roller coaster this is...

Have the mentioned having a cath yet?

 

[Lynlw]

Hi all. While I'm till 3 mo away from "it". Feel as tho I made big decision today in selecting the dr - enjoyed reading about Jeff in dc - and learn from each posting. Lyn u r great ! Thx for all your help. As I get closer I know I'll be in here more often. Right now I just want to get it done & feel peppy again.

Quick question. I was informed today by a post op call I made -To a reacted apmv patient that the heart lung machine goes they the groin ? I may be a blonde but that is not even close to my heart. Any ideas ? Or was I told wrong. .

Im not sure what a reacted apmv patient s, but are you talking about min invasive surgery instead of a full sternal opening/ Often they use either the arteries by your groin or by your neck/shoulder area, for the heart lung machine for min invasive since its hard to fit everything you need and have room to work in the smaller hole. There are a couple other reasons they may need to use a differet incision for the heart/lung machine then the main incision, but usually for first time surgeries, they usually only need it for min invasive surgeries otherwise, they hook everything up in the incision they open for your surgery

ps Everyone has different opinions, buT I personally am not a fan of Adam OR his book, so usually mention people could probably save their money and learn everything here or other places on the web, sometimes "word for word" If you want to spend the money i know hank could always use donations to keep VR running to help people for free.

 

[Nancy jane]

Lyn. I would be delighted to make a donation to this forum. And I will. I shall not mention the book again - mainly because after I thot about it a while - this forum is - as u say much better. Just that the book did help me before I found this. Thx for the tip. Appreciate it. N

 

[Lynlw]

Lyn. I would be delighted to make a donation to this forum. And I will. I shall not mention the book again - mainly because after I thot about it a while - this forum is - as u say much better. Just that the book did help me before I found this. Thx for the tip. Appreciate it. N

Please dont think I was saying you shoud make a donation, I was just saying if someone was going to buy the book,donating here would probably be a better way to spend their money. Some people think the book is good many others have a bad taste left in their mouth by the whole thing, il leave it at that so this thread doesn't get off track

 

[JeffF]

Have the mentioned having a cath yet?

Lyn, I was under the impression the CAT Scan was in lieu of having a cath?