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ET CALR looking at heart surgery
Just opening this thread to track this bump in the road in case it helps somebody in the same boat:
Have had a floppy mitral valve for decades, started regurgitating some years ago, and now my heart function is down and I have a TEE and cardiac cath test Tuesday with cardiac surgical follow up a week later.
I'm 71, have had ET x 17 years. Well controlled x 8 years on HU and aspirin. However big spike in platelets when they did labs this week to prep for Tuesday's tests. Stress? Never bothered platelets before, but others here say they notice stress-related fluctuations. Have also been running high LDH for a year. Oncology is watching it.
Have been adamant with cardiology for 10 years that I do NOT want open-heart surgery for mitral valve repair when they can do it as a transcatheter procedure. My old cardiologist understood, but he retired, and the young new doc a) has made no attempt to understand what ET is and b) is pushing open-heart because "there isn't much really wrong with you."
Yah, except that I am a clot risk and I do not want open-heart. Also, my insurance is not great, and trans cath is cheap(er) with less trauma and recovery time. Hopefully I will be able to get somewhere with the surgeon at the consult with him.
There are other annoyances and snafus going on in the background--the usual nuttiness of being an old lady in the 21st century--aso this weekend I'm taking a "vacation" from with a few good books and the cats, and I'm going incommunicado. I may also splurge on a steak, the price of beef be damned!
My dad also had ET, and, as he observed many times as the ailments piled up. "It won't kill ya, but it complicates every other !#@$ thing."
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Good morning, Jean. I can feel your frustration through the computer this morning, and rightfully so! The prospect of having open heart surgery with potential clotting issue is an eyebrow raiser. Especially if your cardiologist isn’t listening to your concerns regarding having ET…not to mention the lengthy recovery time. Have you run this past your oncologist for an opinion?
I’m sure you’d be put on blood thinners for a while post surgery so maybe that’s why the cardiologist isn’t feeling it’s an issue?
A good friend of mine recently had a Transcatheter Aortic Valve Replacement (TAVR). That was so slick. I was shocked to hear she was back at work two days later! (A massage therapist). Minimally invasive and basically not much recovery time. Just seems to make much more sense unless there’s some medical reason you couldn’t have that.
I guess you’ll learn more after Tuesday and the followup. But I hope the cardiologist will open his ears and actually hear you! I hate that opinions and concerns of women our age (well, women of any age really) are often dismissed.
This is a time to dig your heals in, my friend!
Going incommunicado this weekend sounds lovely. Immerse yourself in books, fur fixes and nature (weather permitting). Sending a gentle hug.
Thanks, Lori. Great to hear your friend had good luck with TAVR. I hope to be a TMVR success story soon.
I asked the cardiologist about consulting my hemo, and he said the surgeon would decide that. My hemo has been attentive to the cardiac problem in the past, and if the cardiac surgeon does not want to consult her, I will do so on my own before I let them start fiddling around.
I also have a routine check-in with my GP the week after the surgical consult, and I'll alert her, too.
Yes, even if you have women doctors--which I opt for as often as possible--you don't always get one who listens.