Closer to a date

[watson524]

Hi all,

As some of you know, my mom is going to have to have her MV replaced. We'll be going to Cleveland Clinic but we live about 8 hours away so her local cardio wanted to try to set it up so that she'll meet with the cardiologist there (Dr. Hobbs) then have the cath and whatever other pre testing they want to do, meet with the surgeon and have the surgery all in a span of about 4 days so we don't have to go out and back and then back out there. Mom got a call from her local cardiologist's office today that Dr. Hobbs can see her on Tuesday (i.e. 5 days from now) but then as she was talking to the woman, her cardio came in and said to the woman on his staff "no I wanted it set up so that if they agree and determine surgery is needed, it's all done in one trip"... so now the office staff is calling back out there.

Dr. Lytle's name came up as the surgeon but I told my mom that I'd like to talk to Dr. Hobbs about that given that Dr. Gillinov seems to focus more on MV and a-fib. Not that I'm questioning Dr. Lytle's abilities given I'm sure anyone out there is wonderful but I'm sort of nervous about how you pick a surgeon when you're setting it up from afar etc etc. so we'll see how that goes.

Right now, we're waiting for the return phone call (should be today or tomorrow) to see what's what. I didn't think it'd be this fast but at this point my mother wants to go out, get it done and get on with it and be back in time for the holidays.

More to come......

 

[Greg a]

thanks for the update.....how young is mom

 

[watson524]

A young 72

the other question we're grappling with is the choice of valves. We don't want to ever have to do this again (barring any issues) so we were thinking mechanical and so were her local GP and cardio (thinking she'll always be in a-fib and would have to stay on coumadin anyway) but I'm reading that CC uses mostly porcine valves....

 

[Greg a]

She is the patient and has the right to make an INFORMED decission

 

[watson524]

definitely. we already discussed that even if she gets out there and meets a surgeon and isn't 100% comfortable, she doesn't have to have him do it. this is a "need to do" but not "right this minute" type of thing.

 

[ALCapshaw2]

A young 72

the other question we're grappling with is the choice of valves. We don't want to ever have to do this again (barring any issues) so we were thinking mechanical and so were her local GP and cardio (thinking she'll always be in a-fib and would have to stay on coumadin anyway) but I'm reading that CC uses mostly porcine valves....

I was of the opinion that the most common valve placed at CC is the Bovine Pericardial Tissue Valve (and NOT porcine valves).

FWIW, Dr. Pettersson is the most prolific user of the On-X Mechanical Valves at CC and he does both Aortic and Mitral Valve Replacements, not to mention that I believe he is one of the Top Rated Heart Surgeons in the World.

 

[watson524]

Thanks for the info Al. Is there some where I can go to read up on average run times for tissue valves? That's our most critical concern... once and done (or in theory anyway). Her family has a tendency to live into their 90s and she has no other health issues but a wonky valve so.....

My list is narrowed to the following: Drs. Gillinov, Lytle, Pettersson, and Mihaljevic.....

The local cardio said the St. Jude when I asked which mechanical valve but I like what I read about the On-X as far as lower ACT possibilities in the works and also reduced risk of pannus issues but I know the newest isn't always the best.

So many things to figure out in possibly a short time.

 

[watson524]

More waiting...

More waiting...

Ok so I guess we're not heading to Cleveland Monday for Tuesday appointments/testing. Dr. Lytle is taking a first look at things (still TBD who will do the surgery) but wants the echo test (not just the report) to review first.

So we're in hold pattern again. Heck, maybe he'll say no replacement needed at this time but given the PAP at 63mmHg, I'm thinking surgery will be warranted. And given the stenosis and regurg with already having a balloon job done in 1997, repair doesn't seem to be an option.

 

[Adrienne]

A young 72

the other question we're grappling with is the choice of valves. We don't want to ever have to do this again (barring any issues) so we were thinking mechanical and so were her local GP and cardio (thinking she'll always be in a-fib and would have to stay on coumadin anyway) but I'm reading that CC uses mostly porcine valves....

Have they spoken to your mom about possibly repairing the valve? Also, has a Maze procedure for the A-Fib been discussed?

 

[watson524]

Have they spoken to your mom about possibly repairing the valve? Also, has a Maze procedure for the A-Fib been discussed?

Given the stenosis and regurg and the fact that the balloon valvuloplasty was already done, the local cardio and GP both said repaid at this point isn't possible, but clearly, we'll defer to the experts in Cleveland.

On the a-fib, I asked the GP and local cardio about that or ablation and both seemed adamant that it wasn't an option but again, we'll be asking those questions in Cleveland. What we are concerned about is getting out of a-fib (she's in it all the time though doesn't feel it) and then going back in. I don't believe she's ever been on meds for it though so those are something I plan to ask about too.

 

[watson524]

More waiting... this is sort of ridiculous and VERY nerve racking.

More waiting... this is sort of ridiculous and VERY nerve racking.

Ok so it's been about 6 weeks since all this came up with my mom's local cardiologist saying he thinks it's time to replace her MV. I did research on surgeons at CCF and had a list of about 6 that I showed to the cardiologist when we met and he mentioned that Dr. Lytle was good and he'd send things out to him to review. I actually was leaning towards a few other doctors given her issues and how each specializes, nothing against Dr. Lytle. After several phone calls, we found out that the local cardiologists secretary had to send more reports out (we suspect she sent the echo video but not the report). So those were sent, then Dr. Lytle was on vacation (can't fault a man for taking a break). So he came back last Wednesday or Thursday and we checked in with the local office and they called and said it was on his list to look at as he was catching up. My mom said the next time she called her local cardio, she wants to talk to her cardio directly... calls today, gets the doctor on the phone, finds out Dr. Lytle isn't taking a lot of new cases because of being in administration. So the local cardio is going to call Dr. Hobbs (who was my mom's cardiologist 10 years ago this month at CCF) and have him review things and recommend a surgeon.... They said we should hear more next week. They're trying to set things up so that she goes out, has any testing they want, we meet with the cardiologist and then have the surgery in the same trip if they think surgery is necessary.

This is all very nerve racking for my mother (and me! LOL!). She was thinking she'd be out and back recovering by this time since it started the last week of September.... so now we're in waiting mode again. She even put off some dental work she was going to have done (soft teeth from rheumatic fever, a cap chipped, it's part of a section of caps, can't just replace one, yadda yadda) but held off thinking she'd be going fairly soon for surgery. Could have had it all done by now.

Here's hoping the local cardiologist and Dr. Hobbs can get hooked up and things can get moving forward.

 

[ALCapshaw2]

Sorry to hear about the delays. It would have been a good idea to get the Dental Work done BEFORE surgery for 2 reasons: Cardiothoracic Surgeons prefer that there be NO dental issues because bacteria in the mouth can cause Bacterial Endocarditis AND, they recommend that NO Dental Procedures be performed for 6 months AFTER surgery to give the heart and valve time to heal.

FYI, the "new" On-X valves have been in production since 1996 when they were introduced to the World Market. They received FDA approval for their Aortic Valve in 2001 and for their Mitral Valve in 2002. I believe they have now produced over 100,000 valves so it's not like they just started in the business. You might also like to know that ALL of the Big 4 Mechanical Valves made in the USA (St. Jude, ATS, Carbomedics, and ON-X) were designed in part or whole by Jack Bokros, Ph.D. He has been designing Heart Valves for the past 30 years now. Do a VR Search for "Bokros" to find posts detailing his background.

'AL Capshaw'

 

[watson524]

Yeah she had wanted to get it sorted but what was supposed to be a simple repair to a single caps turned into needing to take all 6 conjoined caps off and remake so it will be more involved as far as cutting them off as one unit (dumb way to put them on to start if you ask me but it's porcelain or something over metal as one piece for strength on the 6 bottom front teeth). She's pretty annoyed over having held off on the repair and just having the chip pasted back in to the one (especially since the pasted in chip came out today and has to be re-cemented).

As for the valves, that's perhaps my biggest outstanding question (beyond the "when"). Her local cardio and GP said she'd get mechanical because they only want her to do this once but given her age and using CCF, I suspect we might hear recommendations of tissue valve......

 

[ALCapshaw2]

Most Surgeons ask their patients whether they want Tissue or Mechanical.
Selection within those two groups may be limited and vary from surgeon to surgeon.
Dr. Pettersson is a user and proponent of the On-X Valves (over 100 implanted now...maybe more)

 

[watson524]

Hopefully we'll hear something next week. At this rate, since it's apparently not some huge emergency, she's likely going to want to wait until after the holidays but we'll see what they say being as we can't set their schedule