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

❤️
-
Like -
Helpful -
Hug
1 Reaction@nohrt4me
Good luck with all your tests today!! You’ve got this, gurl! 🥰
-
Like -
Helpful -
Hug
3 ReactionsTests went fine, top-notch cardiac group, excellent nurses with info, and surgeon is working with oncology. My right arm is out of full commission for a few days due to cardiac cath procedure, so info that might be helpful to fellow ETs to follow in a few days.
Very grateful to you all checking in here with encouragement. It helps so much!
-
Like -
Helpful -
Hug
8 Reactions@nohrt4me
Thank you for sharing this wonderful update!!!!
-
Like -
Helpful -
Hug
2 Reactions