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."

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Profile picture for nohrt4me (Jean) @nohrt4me

Finally cleared all pre-op hurdles and consults, and surgery is scheduled for Sept 17.

I have to stop taking HU Sept 2 and get weekly platelet tracking. I will also start reducing exposure to colds and other bugs at that time, too, masking at the grocery store, not going visiting, etc. There are quite a lot of pre-op instructions that would apply to any heart patient, but those are the ones that affect those with ET.

Wish me luck!

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Hi @nohrt4me ,
I am glad you got everything taken care of and now will be done with your surgery in just a few weeks. I am hoping your valve can just be repaired so your recovery will be easier. Soon you will be done with it and it will be a thing of the past.
Prayers and positive thoughts for you.

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Profile picture for 1pearl @1pearl

Hi @nohrt4me ,
I am glad you got everything taken care of and now will be done with your surgery in just a few weeks. I am hoping your valve can just be repaired so your recovery will be easier. Soon you will be done with it and it will be a thing of the past.
Prayers and positive thoughts for you.

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@1pearl Thanks! I have Nov 3 on my calender, the first day I will be able to drive again. Helps to look ahead to these things.

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Profile picture for nohrt4me (Jean) @nohrt4me

@1pearl Thanks! I have Nov 3 on my calender, the first day I will be able to drive again. Helps to look ahead to these things.

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❤️

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