Yes, I am back and once again in the waiting room. On 30 April, I expect to have TAVR and a new Medtronic CoreValve. It's sort of a bummer that the CE Bovine didn't make to event 10 years but these things do happen. If we could have controlled it, we would be here chatting. It is nice to see that there are several people still around whom I recognize.
Hi, Don, if you are still reading responses, I would like to hear how things have gone with you. Later this month, my Cardiologist will place a Medtronic CoreValve in the ring of my Edwards Bovine Pericardial. So far, I've not encountered anyone with any experience of the Medtronic valve. Hoping to hear from you.
Hi, Neo, I've read some articles now about NOTCH1. There are two versions of NOTCH1 identified so far. The normal one produces a binding protein that helps in wound healing. The mutated version does the same thing but it produces far more than is needed for healing. I can produce 50 times more. This overproduction of the binding protein appears to cause the calcification of aortic valves. The protein appears to cause calcification of any biological leaflets although more research will need to be done to understand the process better. If this is true, and one has the mutated form of NOTCH1, any biological leaflets are likely to calcify. If this genetic mutation does prove to be a major cause of aortic stenosis, then its unlikely that diet or exercise could have any significant effect on the progress of calcification. Fortunately, several groups of researchers are interested in tracking down the relationships of NOTCH1 to aortic stenosis. The group at Vanderbilt University is actually studying a new drug to treat rheumatoid arthritis when they realized that their drug shuts down NOTCH1. So, its possible in a few years and, maybe, not all that many years there could actually be a drug on the market to keep our bioprosthetic valves going for much longer.
Things are progressing more rapidly than on my first dance with valve replacement. I will have the inevitable heart cath this week and next week a CT Scan before the 2nd valve replacement later this month. Things have changed quite a lot in this past decade. For one, I'm now a candidate for TAVR. My Cardiologist's plan is to put a Medtronics Core Valve into the ring of my 23 mm Edwards Bovine Magna. He wants to use a slightly larger Core Valve so his plan is to "fracture" <boy, that's a difficult thing to think about> to fracture the ceramic ring of the Magna and insert a 26 mm porcine Core. He assures me he has done this many times and it works well.
Other things are afoot, however, in that there has been some surprising work done that may help everyone with a tissue valve in danger of calcification. Several groups studying various and sundry other things have come to find that a mutated gene [NOTCH1] may be the source or at least major contributor to valve calcification. The mutated form of NOTCH1 produces an amount of a binding protein that can be as much as 50 times normal. Many of the individuals identified with a super abundance of the binding protein have calcified heart valves. A group at Vanderbilt University came across this while studying a new drug (actually a monoclonal antibody) that they hope to market for people with rheumatoid arthritis. In the course of their research, they found that their "drug" shuts down the NOTCH1 so they had to follow the trail of bred crumbs to see what happens next and realized that the drug may prevent calcification. So its possible within a few years that, through this bit of serendipity, a drug could be available to help preserve our tissue valves.
I read your interesting posts on valvereplacement.org about aortic valve replacement. I would so appreciate if, at your convenience, I may be able to talk to you over the phone for a few minutes about your experience with the Resilia valve and about the Cleveland clinic. I have family member who may need to go there.
Sincere apologies for my late reply, Ive been very busy in London. How are you? Any help you could drum up would be greatly appreciated. Fundraising this side of the Atlantic is going well, but its a bit slow coming from our American cousins. AAny prompts in the right direction will im sure help VR in the end. David x
Rob, did you see the thread Thoracic aorta dilation in an avr veteran? I thought of you and TurkeyHunter when I read it even though I know you had a mechanical valve and TH had a Ross. I think the Guest is Peter E whom I remember from the very early days of the forum.
Hi Rob. There's a new forum member who asked how I knew of Dr. Pettersson. I mentioned that the member, Patrick7651 would be in good hands for his upcoming surgery. He's going to CC and Dr. Petterersson is the surgeon. I thought he did your original replacement so just checked your profile to make sure. Anyway, he's nervous of course, and he might want to ask you about your experience. Mary
I have not been active with VR.org for a while, though still logging in occasionally to see what's happening. I thought of you just now as I was reading over old messages, including a very thoughtful message from you about 10 years ago regarding PVCs. It reminded me that you seemed to educate me with each message, and I was immensely grateful.
My very quick update is that things are going well. My surgery was in May, 2005, so I am 11+ years out, still playing squash and doing other things that remind me how sweet it is to be alive.