ET CALR looking at heart surgery

Posted by nohrt4me (Jean) @nohrt4me, Apr 17 7:50am

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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Profile picture for 1pearl @1pearl

Hi @nohrt4me ,
Yes, you are doing a great job checking into everything. Hopefully you get to have the less invasive treatment method for your heart surgery that you posted about a while back.
I am sure you will do just great regardless.
I had a MRI of my enlarged right ring finger and got sent to Infectious Disease doctor as the fourth Hand surgeon felt suspicious of indolent infection. After three MRIs, I was disappointed that it could not be figured out by now. Oh well, at least I have no pain and still no symptoms as well as all my usual energy. I just get tired of appointments that are less helpful than I would like.
Thanks for your update and I love seeing your photos of your cat babies and those you are watching.

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@1pearl The less invasive procedure looked great, but apparently the clip they use does not adequately fix the problem, and for someone with clot risks, you want the best fix possible.

My cats are such a great distraction. Flora just got done licking out my yogurt cup. She loves that key lime yogurt! Now she's all tuckered out. She is almost 20 years old!

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Profile picture for nohrt4me (Jean) @nohrt4me

@1pearl The less invasive procedure looked great, but apparently the clip they use does not adequately fix the problem, and for someone with clot risks, you want the best fix possible.

My cats are such a great distraction. Flora just got done licking out my yogurt cup. She loves that key lime yogurt! Now she's all tuckered out. She is almost 20 years old!

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Hi @nohrt4me ,
That is so good you researched and found that out ahead of time. You definitely want the best results and not needed more done!
Cats are wonderful. Our Pearl loves to drink the leftover milk in our cereal bowls before church on Sunday and last night, she found my husband’s chocolate chip ice cream bowl and licked that clean. I use a lot of bleach, ammonia, and vinegar cleaning stuff.
You are a great cat mama. Our beloved Snowy my daughter adopted from the local shelter here only made it to 18.5 years. Pearl is four years old now and we hope to have her for a very long time. She really is a great pet and comes to sit on my mat when we do stretch and yoga, appears at the foot of our bed sometime late when we are asleep almost nightly, and comes sits by me when I take my BP most mornings and find it completely normal at home.

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Haha, yes, Flora comes and sits on me during yoga time. Such a puzzle you've had with that finger. It's disconcerting when you know something is off but the doc's can't figure it out.

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