Ginger (in the Land of Oz) posted a note for Penelope that says:
Greetings! Glad you had such great experiences at Duke! Great place!
I was born with a bicuspid aortic valve and have had a murmur all my life. I'm 61. About 10 years ago my physician heard a change in the murmur and I have been seeing a cardiologist at least once a year for some testing, which later became and echocardiogram and an appointment to discuss the current status and plan with my cardiologist.
This year my cardiologist suggested I plan to get a consultation with a heart valve surgeon, and he had specific qualifications he thought both the valve center and the valve surgeon should meet. I have in my history a traumatic brain injury, which greatly complicates things.
So after ten years of repeated testing, etc., and wondering when, my when has arrived. I learned just two days ago that my surgery is scheduled for July 31 with three days of tests and procedures before the surgery.
Now that the time is here, I am actually glad to get this taken care of, recuperate, and not wonder every year.
I am planning to have a tissue valve if amenable to my testing and surgeon. My cardiologist does not think it would be wise for me to be on long term anticoagulation because I already have brain damage that flares up from time to time. For a period of time I was having vertigo and balance problems and was falling multiple times a day. Thankfully that is no longer the case.
My hope is that should I need to have the tissue valve replaced, the research now being done on TAVR or something like it will be advanced enough to place a new tissue valve where the "old" one was. I know some work is being done in that direction already. I do not see where anyone would choose to do anything more invasive than necessary, but each of us is unique and what is the best choice for one is perhaps not the best for another.
It certainly sounds as though you are in good hands, although I greatly doubt your wait will be as long as mine has been, but who knows?
John O'Neill posted a note for Penelope that says:
I went through this process five years ago. I am still a very active 63 year old farmer that does triathlons and marathons along with full time farming. My only restriction is I don't do obstacle races for fear of bad bruises or injuries. With the mechanical valve I just try to eat a consistent diet to match my coumiden dosage. I will not forego my green leafy vegetables fresh from the garden. I recently was diagnosed with sleep apnea and now use a c-pap machine and really miss hearing the tick of the mechanical valve at night. You can search my name on this site for my story as it was before heart valve journals. My doctor told me after an interview that I would of wore out a tissue valve in no time. I also home test every week for my INR.
Lots of prayers and good luck
m posted a note for Penelope that says:
Hi Penelope - this is M responding to your question why am i going for a mechanical valve. I am 66 and my parents lived well into their nineties. I was very active before my bicuspid valve caught up with me. I am going with mechanical because i dont want to go through major surgery into my seventies and then eighties. i would prefer to limit the amountof surgery i undergo to minimal. I have met people who are on warfarin for other reasons (my brother had thrombosis) and i think i could handle that better than having to undergo surgery. hope this helps. love m
Renee posted a note for Penelope that says:
Hi Penelope my name is Renee and I had my aortic valve replaced two years ago. I had a bicuspid with calcification. I have a bovine valve its leather like from a cow. If you go mechanical you will have to take blood thinners the rest of your life. The one I got I do not have to take any meds. For me that gave me a piece of mind. I wish you well on your journey. I hope this helped.
Meredith Bray posted a note for Penelope that says:
Hi Penelope! Welcome to the forums! My best advice to you at this stage is: don't believe anything you read about heart surgery, valve relearned, or anticoagulation on Wikipedia or WebMD! Go for reliable sources, like Cleveland Clinic or Mayo Clinic. My surgeon informed me that a tissue valve would allow me to be more active, but that I would eventually require at least one additional surgery, likely in less than ten years. He also informed me that a mechanical valve would require paying attention to my diet, and lifelong medication. Having never had surgery before, I opted for the mechanical valve. I am on warfarin for life, can hear the ticker (which I don't mind), and am pretty sure I won't need another surgery unless something happens with my carbon-fiber valve. I am willing to answer any questions you have about my experience!
M aka Mary posted a note for Penelope that says:
Hi Penelope - thank you for sharing on this site. Your situation sounds very similar to mine. Was going to the gym lifting weights thought i was very fit. Had breathlessness for some time but always put down to stress. Then mumur detected further tests and shocking news. I am having surgery on 17 July and have decided mechanical valve is the way to go so i will be interested in your experience. Have been following Anthony Copeland-Parker as he has just gone through surgery and opted for mechanical valve. My thoughts will be with you as you undergo your surgery. love m
Cami Munk posted a note for Penelope that says:
Wow Penelope! What a story.
I found out about my bicuspid valve and aortic stenosis after contracting endocarditis after some bad dental work. I have been monitored for 7 years and I knew my surgery was coming, but it was still shocking to have my cardiologist say "Call a surgeon, you can't wait any longer." I can only imagine how you must have felt getting that diagnosis with no real warning.
I had my aortic valve replaced on March 3 of this year with a tissue valve. I chose a tissue valve over mechanical because I did not want to be on blood thinners for life. I am 47, have a 5 year old girl, and after all our research my husband and I felt the restrictions of Coumadin or warfarin were too much for me at this time of my life. She is active and I didn't want to be restricted while she is still so young.
There are several people in this forum that I have corresponded with regularly that did get mechanical valves and they can give you more insight into their choices - try Clare Auten and Meredith Bray - both are doing well after their surgeries and are pleased with the mechanical valve.
I wish you well on your journey. I had my surgery on March 3 and started cardiac rehab on April 16. I am cleared to run a 5K in late August and I have never felt better (physically) in my life, and I was a runner for a long time!
This forum is excellent for asking questions and getting support. I recommend using it often, especially as you approach surgery and in those first few months of recovery. Everyone's experience is a little different, but there are many things that are the same. I got a lot of benefit just from browsing people's postings.
Good luck on Thursday & Friday. It sounds like your heart will be in good hands, literally, later this week. :-)