Home from 2nd AVR!

[rcatalano]

Peggy,

Thats the million dollar question...

My surgeon told me to go with a mechanical valve. His words "You don't want to do this a third time".

I remember lying in intensive care 2 weeks ago with that damn ventilator tube down my throat, smiling inside because I made the right choice! (for me)

There is no perfect solution, either route is perfectly valid.

I think its much more important to have a good surgeon and go with something he's done hundreds of times. A good surgery will fix your problem regardless of which valve you choose!

Good luck!

 

[Peggy in Alaska]

valve choice

valve choice

So Rob:

What I am hearing is that tissue is good for the 1st time around for someone like me in my late 40's, but when it gives out, and I have to have another OHS, I should go with mechanical that should last me the rest of my days, because I totally agree with your surgeon - I do not want to go through a 3rd one when I am in my 70's!

Thanks for your comments. I'll know more when I see my cardio. doc next summer.

 

[conk]

We should compare notes

We should compare notes

Rob...very interesting that we had our AVR on the same day and it was both a second one for each replacing a tissue with mechanical. I sure with I would have gotten 14 years out of my tissue valve, but such is life.

I noticed that you have the first valve replaced at Balboa Naval Hospital. Were you in the Navy (stationed at Pt. Mugu, in an operational F-14 test squadron...VX-4). When I was about to leave the Active Duty Navy in 1984, they discovered just before I got out that I had Hodgkin?s Disease. I was treated at Balboa Naval Hospital. They did an exploratory laporotomy/splenectomy to state the severity of the cancer. Two weeks after the surgery, they followed up with about 6 weeks of Radiation at Balboa. My surgeon stated that it is very likely that the Radiation accelerated the timeline for my bicuspid to develop severe AS.

At any rate, glad to hear you are doing well. I was able to ride 45 minutes on a stationary bike on level 5 and keep my heart rate below 130 (the limit my cardiologist has given me for now), I averaged 122 HR for the 45 minutes. Felt pretty good, in fact as good as I've felt so far.

I did have a scare earlier this week. My INR was down to about 2.0 and my Cardiologist prescribed Lovenox as a gap filler, until I my INR comes up. I remember they gave me at least 4 of those shots in the hospital. Did you get any of those shots? I remember in the hospital of having a bit of dizziness and nausea at one point, but I didn't associate it with the Lovenox. Well after 4 hours after my 3rd injection at home, I had the worst dizzy spell I have ever had. Had to hold on to the counter to not fall over. It was like my world just got small. I then immediately got nausea and I was completely soaked in sweat that came on in less than 5 minutes. I remember during this time listening to my heart rate for abnormalities, but the for the entire episode, my heart rate and sound just kept a normal rhythm and sound. This calmed me and the situation passed in about 15 minutes, although I didn?t quite feel right for the rest of the day. I'm sure it was the Lovenox. I haven't taken any since and haven't had any spells like that since. Have you or anyone else had a similar experience?

Better get to bed, but again glad to hear you are doing well and look forward to progress reports.

Regards...Denis

 

[rcatalano]

Denis,

Man, looks like you've earned a break for something to go right!

I was in the Navy for almost 10 years - they found my aortic insufficiency the first day of flight school in 1981. That was the end of that.
Was an aircraft maintenance officer at NAS Miramar for almost my entire 9 year career - E2s and F14s. I can remember working with VX-4 when we had missile shoots.

Doctors at Balboa said if I wanted to stay in the Navy, had to go with a tissue valve. In the end, it didn't matter. Medical board retired me with a 30% disability!. I felt a bit guilty doing triathlons while collecting disability checks.

I can't believe you did 45 mins on a bike already. They don't want my heart rate to go more than 20 beats over my resting heart rate. Most I've done is walk 1.25 miles - I'm walking about 3 miles a day, still way over what they're recommending.

I got out of the hospital with an INR of 2.0. Since then its been between 2.7 and 3.0, I haven't had any shots. Saw the cardiologist 2 weeks after surgery, now don't have to see him for another 6 weeks. As far as I know, all he wants me to do is walk and I'm trying to be patient. Maybe I'll give a call to see if and when I can increase the load.

Its amazing how my biggest problem is my back - though I'm not complaining considering there could be far worse complications.

Also a bit concerned since my cardiologist said my valve is a 'cheap St Jude knockoff' to cut costs. He said a surgeon told him this, but he admits to not knowing much about the different valves, he lets the surgeon sort that out.

Sad that you had to endure 2 of these operations in the same year. For me, the second one was a walk in the park compared to the anticipation and anxiety of the first, not to mention it was a career and life changing event.

Good luck!

 

[Nancy]

'cheap St Jude knockoff' to cut costs

'cheap St Jude knockoff' to cut costs

Hi Rob-

Something caught my eye, that your cardiologist told you that you had a "'cheap St Jude knockoff' to cut costs".

Do tell, which valve did you get? Inquiring minds want to know. You should have gotten a card with the manufacturer and model number on it.

 

[rcatalano]

Nancy,

I received an ATS Medical Open Pivot aortic valve, model 500FA21.
I received paperwork from ATS on Friday to get my ID card.

My cardiologist admits to knowing very little about the different valves - this is what a surgeon told him. He said he was told its every bit as effective, like getting a generic drug.

Prior to surgery, my surgeon said I would either get a St Jude or ATS Medical. I don't think he gave me the ATS to cut costs. He said the St Jude valve he had in mind was in clinical trial and couldn't be used on me since I am a reop.

ATS Medical was started by Manny Villafaña, who also founded St Jude Medical and CPI/Guidant. The ATS valve has a patented hinge mechanism so there are no indentations where blood cells can aggregate. Ross pointed out to me a study that claims the ATS valve in the Aortic position can use lower INR ranges - 2.0 to 3.0 due to its design. Like other bileaflet valves, it is made of pyrolitic carbon. My surgeon told me it is the quietest valve, and I've seen studies that bear this out. Yet my wife and daughter can still hear it. I can hear it sometimes also.

According to my hospital bill, the valve cost $6300, have no idea what others cost. I've read many studies on Medline comparing ATS to St Jude and others, it does seem to be at least comparable in quality. From all my research, it is a good valve.

I just thought it was a strange thing for my cardiologist to say.

 

[Ross]

I just thought it was a strange thing for my cardiologist to say.

Rob I think that was the "uneducated portion" of him speaking. I think it's one of those times that he chose his wordings incorrectly.

 

[bvdr]

I agree with you Ross. Sometimes docs come out with some real winners. On my post-op visit to my pcp he asked me when I had to go " back to Durham to see the gods". He just thinks some of the doctors at Duke have very very healthy egos.

Rob...you already have paperwork on your valve? I don't have anything yet. Did it come from the manufacturer? Does everyone have ID cards for your valves? I have a brand name St.Jude , but he told me he just put in the" basic model that has been around for years". So no new technology for me . I guess for all of us only time will tell.

 

[Ross]

I got my card while I was still in the hospital. Lyn said it came about 4 weeks after surgery. If you don't get one after 6 weeks, I'd be calling the surgeons office and then if need be, St. Jude. If you need the number for St. Jude it's 1 800 344 5833.

 

[rcatalano]

Betty,

I received paperwork from ATS on Friday to confirm my contact information. They said they are required by the FDA to keep track of patients with implants. I will get a patient card after they confirm my info.

I've seen others in the forum with St Jude valves say it took about 5 weeks to get the patient ID card.

As for a St Jude valve - that is the gold standard. Nothing wrong with a tried and true valve. I remember seeing the different St Jude models on their web site. My surgeon said his first valve implant was an early St Jude model, almost 30 years ago. He said the woman is still alive and doing well, with the same valve.

 

[HFK]

Just a little fyi , I think I replied to this one before .,The ATS valve was invented here in Mpls , I worked with Dr Demitre Nickloff whom was 1 of the 3 Dr's to start CPI which now is Guidant, Dr N. and this other Dr slightly redesigned their original St. Jude's valve slightly its 2nd generation to St Judes. That's the word here at the hospital. . The big push of this valve was it was suppose to be quiter and require less coumadin, but as time passed both seem not to be true.. I don't think its rated a second rate valve. Dr's seem to get comfortable with one valve or two valves, and that's what they put in. Its always scarey to know that some doctors are just driven by money ,and kick backs. I am so glad your doing well after surgery and hope your road to recovery is uneventful. I was still in ICU for 2 wks and hospital for 6 wks. That should make you feel better...ha..ha.. They say when a doctor or nurse has surgery we usually have the problems. Strange, the day of surgery their were 8 patients, 2 nurses and 1 40 yr old doctor and 5 nonmedical patients , The doctor was still in ICU 6wks later and the other nurse ended up with pacemker too and had other problems and the other 5 pts. uneventfully were dc after 5 days. Moral of story " say a extra prayer for a nurse or doctor, we seem to need it." It's a strange phenomenon.HFK

 

[Gisele]

Betty

Betty

I don't have an ID card for my valve...guess they didn't make them back then. Now I have a Medic Alert card with my serial number on this card. From what I understand it was part of the settlement Bjork Shiley had-that they would pay for this service for its' valve patients. So every six months I get a free Medic Alert ID card. So for now I will hold on to it........

 

[rcatalano]

HFK,

Thanks, I certainly remember your previous post. Its part of the reason I feel pretty comfortable with the valve. It's not so much what the cardiologist said, but that some surgeon told him that. It took me by surprise, didn't think to ask him which surgeon.

I also agree that surgeons get comfortable with a particular valve or a particular method. If it works, why mess with it. I don't sense any conspiracy here - kickbacks to the doctor or whatever. I would bet my surgeon, who's been practicing about 30 years, was familiar with Dr Nickloff and trusted his expertise.

 

[nadi]

i d card

i d card

Betty,

I got my card about 3-4 weeks after surgery. It came directly from St. Judes