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tobagotwo

VR.org Supporter
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Feb 10, 2004
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Location
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A lot of people are curious (and reasonably so), so here's a rather long-winded, tedious thread about the series of events around my recent valve surgery...

Al Capshaw said:
Bob -

I confess I was surprised by your 'sudden' surgery, although I was aware you had some 'issues' from early on.

I am curious about what triggered your decision to go ahead and finally replace your valve and what you replaced it with.
My symptoms. Al. They were worse than they were the first time. As I had pointed out for some time and in many posts, my valve was not right from the get-go, so I knew there had to be a reckoning with it eventually. But my cardio's office was telling me I had a 1.1 cm² valve opening, which wouldn't get me anywhere with a surgeon unless I were bedridden. (Generally, with symptoms, any thing below 1 cm² can be a green lght.)

I got my latest echo results two months after the echo. In between, I had been contacted by the cardio's office and told that the echo said my heart was "normal."

Except the echo was very different. In this new echo, I suddenly had mild regurgitation in both my tricuspid and mitral valves, which had not been affected before. And it indicated calcification beginning on my mitral valve. My valve opening was listed as .74 cm². Plus, I now had AFib and "pauses" in my heart rhythm.

The cardio wasn't even going to discuss possible surgery. He didn't even consider my aortic stenosis severe. He said that the pressure gradient was 39 mmhg, and 40 mmhg was the demarcation for severe. I pointed out that the mitral and tricuspid valves were now leaking, and the pressure was lower because it was now going out both ends of the ventricle: the aorta, and also back into the atrium. Rather than showing that my heart was dealing with the issues (his view), it said to me that my heart was unravelling like a wet, cardboard box. He felt the mild regurgitations were not particularly harmful, and I should go to his Coumadin clinic for the AFib, and to to an electrophysiologist to determine what to do about the rhythm issues (read: pacemaker).

I saw those misrhythms as precisely what they were the last time: a cry for help from my heart. Ginger Baker playing nightly on the stage of my heart. (He was the drummer for Cream.) The cardio felt I wasn't particularly symptomatic, and I am at a loss there, having described my increasing angina and SOB with him at each visit.

Also, if the AFib is related to the valve issue, and the valve is replaced (which always includes a cardio conversion) within a few months of onset, there is an 80% chance it will dissipate. Later, it's less than 20%. He was entirely willing to trade me having permanent AFib and possibly getting a pacemaker for - what? To control my case another six months? I don't for a moment think he meant ill, but that is not a decision you make for someone without discussion.

He had already sat on the report for almost two months, and had apparently brushed up that morning and saw that I had AFib, and it was suddenly an emergency to get me into his Coumadin clinic.

By that point in the visit, I already knew what my plan was going to be: find my surgeon and get that thing replaced ASAP. At that point, there was no reason to get into anybody’s Coumadin clinic, as I knew I would likely be having the surgery in the next few weeks. (They wouldn’t be likely to have my INR even stabilized by then, and the bridging would add new dimensions to the surgery, and likely even raise the prospects of a post-surgical stroke – all over an arrhythmia that had an 80% chance of going away after surgery.) As far as the other rhythm problem (“pauses”): after the replacement and cardio conversion, your rhythm may get worse, or it may get better, but there is an enormous likelihood that it will not be the same. No point in treating a temporary phenomenon with some permanent fix that would also likely delay the resolution of the base, obvious causation: aortic stenosis.

I allowed him to prescribe Plavix for the AFib, and reminded him that I am not 85 years old (barely 57), and thus it wasn’t appropriate to simply manage my heart condition until I died of something else. This is the thing I’m most likely to die of, at this point. Everything else works.

Everything at that point became a whirlwind of trying to get visits set up, deal with turnover at work (now, mind you, at this point no cardiologist has agreed with me yet), get information from the third party company who handles company leaves, try to figure out what dates might work, and try to take the week in Maine that I would miss earlier. I had trouble getting files sent from one office to another. They sent none. Then only part. Obviously, no one had immediate time to talk to me, although I give great credit to both my cardiac interventionalist (Cath Man) and my surgeon for making time for me much earlier than I really could have expected.

I had to present my case to each of them, as I had no cardiologist’s agreeing opinion in my pocket. The surgeon was very careful that he was not putting the idea of surgery into my head, nor making it too easy for me to get the surgery. However, he was persuaded by the arguments (they make sense) and the aperture size, along with my symptoms. The Interventionalist was a bit more skeptical, but in the end, determined that along with my symptoms, it was one reasonable path to pursue.

They each provided “maybe” dates. At one point, a PA told me the dates were “casual.” I explained that when you’re working (which I still was), all kinds of people want firm dates, and it isn’t so casual. Both doctors wanted to push it forward because ot the AF ib liability. They agreed to hash out a schedule while Pat and I went to Maine for the last week. (I have no PC or connectivity in Maine.)

The Thursday before we returned home, I was finally able to confirm the dates. I particularly have to mention my Interventionalist, because he drove all the way into Newark on a day he wouldn’t normally be there, in order to allow me to have the catheterization in the destination hospital and stay there overnight.

It was a fairly wretched, frustrating time, and the trip to Maine was a great blessing, if a bit eery (you can’t help but wonder a bit, after all).

There’s more, but I’m out of steam for the moment…

Best wishes,
 
It is a good thing that you are both as knowledgeable as you are and as hard headed as you are (I mean that in a good way). Most people would have just given up trying to deal with all the bureaucracy.
 
you are always a perfect example of being the perfect advocate for yourself. this was a chaotic time but you didn't give up, nor in. What a story - hope all read it. Blessins
 
Bob,
That is quite a story, I can only imagine the frustration you went through.
Thankfully with your amazing knowledge you got it done.
It's good to hear you are doing well, your story can be a lesson for many.
Rich
 
Sounds like you chose to do what was right for you and to hell with the rest of them. Sometimes that's best! I did something similar and when I convinced my Cardio to do a cath he decided that I didn't need to wait for surgery a moment longer.

So, did you go tissue or mechanical? Or did you say and I missed it?
 
W O W!!! Tobago, that was quite the story. I'm just glad you're ok. Unreal!!! But you're on the mend now, and that is what is important.

Evelyn
 
Bob,
Thank you for sharing this saga with your experiences and reasoning for pursuing an alternate route than the one recommended by your cardio. It stands as a testament for self-advocacy. I wish you the best and look forward to Part II.
Take care,
John
 
Thanks for the details Bob.

That is another Perfect Example of why it is best to 'self refer' to a SURGEON when you KNOW you have a problem that can ONLY be Fixed by Surgery and your Cardiologist wants to 'drag his feet'. BRAVO ! and Well Done !

I found that (many / most?) Surgeons are very receptive to patients who present with known Valve Issues and only ask for copies of all their Test Reports and Tapes to review for themselves. In (TODAY's USA) you can still be your own advocate and referal.

Have you told Cardio #1 that the Problem is FIXED yet? :)
 
Oh Bob, ,my goodness. Thank goodness you are such a good advocate for yourself. We have to be nowdays. We, ourselves know when our body is just not doing what it is supposed to. We can tell better than anyone when something is out of whack. I sincerely believe I'm still alive because I took control. Because of this site and the leukemia site I belong too I read everythning I could about my condition. When I went to the doctor I had loads of questions. I don't think they liked it very well but too bad! One time my oncologist didn't want to go over my tests results with me, and of course working in the medical field and reading these kind of tests everyday I could read my results. When he refused I told him that I was paying him, he wasn't paying me to come to him so start explaining. He has been my best friend every since. So hang in there Bob, you are one of my favorite people and I wouldn't want to lose you.
 
So, I had my dates (24th cath, 25th surgery) and showed up on the 24th and had my cath. Later that day, I found out that he felt I wasn’t severe, and he had recommended against the surgery after the cath. The aortic opening came out as .8 cm², but he felt the other valves weren’t involved, the way the echo had shown.

That’s enough to give pause to anybody (even stubborn me). It gets you doubting your sanity and objectivity. After all, you really don’t want to do it at all: you just don’t get that choice. I felt the crux was whether I was willing to trade 6-12 more months before having to have the surgery for having a badly damaged heart the rest of my life.

I still felt I was on the right ground, but now didn’t know if I was going to be able to convince anybody else. I was starting to look like a panicked, precipitous idiot, but I still didn’t feel like one.

Fortunately, my surgeon has confidence in himself, and a pretty big set of cojones as well. He said to his PA, “Well, I’ve known this case for quite a while. If he decides he still wants to do it tomorrow, then we’re still on for him.” (Again, he was well within protocol, as I showed as under 1 cm².) The tests were somewhat in contradiction with each other, but he believed I knew my symptoms and self enough to know I was in trouble.
This is a good reason to follow a surgeon all the way to a hospital in downtown Newark, NJ. He saw it as just a disagreement of opinion between professionals.

Sheesh!

The surgery did show that two of the leaflets were permanently glued together with an unknown substance (not calcification: they’re testing it for the beginnings of possible endocarditis, although they don’t feel that’s the likely answer). The third leaflet had a small tear, but it was at the edge of the commissure, and likely was not affecting the valve at all. I basically had one, well-calcified, inflexible leaflet still working for me. I don’t have further information on this yet, but you can bet I will be hounding people for it. I suspect it’s going to turn out to be an AOA recrystalization issue, which would be a manufacturing problem, but I have no evidence at all to support that theory.

Mary became aware of it because I sent her and Bob some plants a couple of years ago. She had good luck with them, and was sending out some local mineral samples as a thank you. In attempting to thank her for that, I mentioned the surgery and the lack of dates and closure for all of it. People want information, and I didn’t have any to give until the last minute. In fact, I think I put my surgery on the calendar even before the dates were actually sealed. I didn’t want to post about it until I had information for people, and sure wouldn’t have had time to explain why before it happened.

The new valve was a toss-up between the Edwards CEPM and the St. Jude Biocor, which is now available in this country. Both are tissue valves. We went with the Biocor, as its 20-year numbers are just a little better than Edwards'. I'd have been happy with either.

Best wishes,
 
If "I" was telling my cardio all those things "I" would have a new cardio.
You betcha he's not my cardio anymore. I'll never see him again. That was part of all the scurrying around: setting up my new cardio (who also happens to be the interventional cardiologist). The original cardio was history before my wife and I even left his office.

Best wishes,
 
Maybe that's the kind of valve I can get next time. This's pig's valve sure hasn't lasted like it should. (only five years) Just here back my cardio said for some reason my body was rejecting the pig's vavle. I asked him what to look for or what the symptoms would be and he said when I quit breathing. Right ! ! Is that like living with a time bomb or what. At least if if happens at work I'll be in a good place for immediate help.
 
Bob,

Thanks for sharing your story. There is muched to be learned by all from your experience. I interviewed two surgeons as two different hospitals in the Chicagoland area. Neither hospital is using the procine valve anymore. I hope my bovine valve gives me a good number of years of service.
 
Glenda, there isn't any rejection in the normal sense for xenografts (animal tissue valves). Yours may be calcifying early because it was so tiny-sized for you. Or maybe yours has an issue similar to what mine had. I understand a few other Mosaics are sufacing with early issues now. However, I'm also reminded that the vast majority are still out there doing splendidly.

Best wishes,
 
Bob, Thanks for the update. altho I just want to add something, THIS is pretty much the description you put in the presurrgery thread Mary started, when people first started acting like everything was a secret http://www.valvereplacement.com/forums/showthread.php?t=32359&page=2
I also posted in the post surgery thread your post in the "Medtronic failure thread" from 2 weeks before your surgery WHAT valve you would be getting ect. I didn't know when you were having surgery but from that and the post in a cath thread where you wrote you were having a cath soon I figured it was sooner than later. I didn't post asking about it, because I thought the purpose of VR was to help everyone having valve surgery and it should be mainly about how the person wants to handle everything not making sure the members feel like they know everything going on, so I figure YOU would post about it when YOU wanted to.
And FWIW Mary started the presuregery thread because she saw you had put the date on the calender, I only know this because I haven't been real active here lately and Mary emailed me to tell me you put a date on the calender because she knew I cared about you and would want to have you and your family in my prayers.
 
"The surgery did show that two of the leaflets were permanently glued together with an unknown substance (not calcification: they’re testing it for the beginnings of possible endocarditis, although they don’t feel that’s the likely answer). The third leaflet had a small tear, but it was at the edge of the commissure, and likely was not affecting the valve at all. I basically had one, well-calcified, inflexible leaflet still working for me. I don’t have further information on this yet, but you can bet I will be hounding people for it. I suspect it’s going to turn out to be an AOA recrystalization issue, which would be a manufacturing problem, but I have no evidence at all to support that theory."


It will be interesting to see if this film is made of the same material that is causing "bumps" on some of the other mosiac valves.
 
Thanks, Lyn. A lot of what I posted just before the surgery is kind of a blur now. But now I can see that as I age, I tend to repeat myself even more...

I mention the recrystallization issue, because the ones before release that had the original issue years ago were described as having tiny "bumps." It's also something that was so ticklish, even changing to a new vendor for the AOA or some component, or the timing of taking them out of the bath (25 valves in the bath, bought new trays with only 24 spots, so one stays in pickling longer), or the valves not all coming out at once to allow a log book to also ride on the drying tray could cause a recurrence of that type of issue.

It's so hard to know.

One major drug manufacturer had an issue with a product and couldn't figure out what was happening. They went through all their procedures and vendors and could find nothing to account for it. Finally, it came to light that a supplier of stoppers for tubes the compound was in during one process had slightly changed the composition of the stoppers. Although they looked identical, and the vendor insisted they were chemically inert for this use, something in the stoppers reacted very slightly with the product. So, it's not always simple negligence or non-caring. Some of this is extremely difficult to detect.

Best wishes,
 

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