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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lynnebgraham | @lynnebgraham | Apr 29 5:39pm

In reply to @nohrt4me "Thanks for the encouragement, everyone. One of the tests ordered as pre-op assessment is an echogram..." + (show)

@nohrt4me
Happy to hear that your doctors are at least talking to each other. I am sure they took your wishes into consideration of what to do; however, we have to trust they do know what they are doing, even though it is not what we would have wanted. Hope the next lot of tests help you to understand their thinking. I see my hematologist today regarding my operation next week. Should be interesting to find out her thinking and what she tells the surgeon.
Enjoy your time away with cats and enjoy your steak and a good book. My mouth is watering thinking about it. Take care lovely lady.

janemc | @janemc | Apr 30 4:27am

Jean and Lynne, wishing you easy drives to your appointments, and laser-focused attention from your doctors.

1pearl | @1pearl | May 1 9:52am

In reply to @nohrt4me "Thanks for the encouragement, everyone. One of the tests ordered as pre-op assessment is an echogram..." + (show)

Hi @nohrt4me ,
Good for you not making any hasty surgery decisions for your valve issue. It is great you have a whole team now working on figuring it out. Knowing more is better.
I saw a new older hand surgeon yesterday who was very honest with me and said he had never seen exactly what my ring finger has, but from my recent MRI and the one done first (not through my Medicare choice last year) that to him it really looks like indolent infectious joint problem and the only way to tell is to biopsy a small sample of bone there, tissue, and fluid. He did not tell me what I was told last year that I had an old injury there, maybe because that group did not do MRI with and without contrast and my first and last MRI of my finger were. Anyway, he feels I would be best seen and treated for it around here at UCSD and will let my primary doctor know that. So I not only have CALR 1 and ET or PMF, but a rare possible indolent bone infection in my right ring finger! We shall see and amazingly I have no pain or symptoms from either for which I remain thankful to God.

lynnebgraham | @lynnebgraham | May 1 5:59pm

In reply to @janemc "Jean and Lynne, wishing you easy drives to your appointments, and laser-focused attention from your doctors." + (show)

@janemc
Thank you so much, especially for caring about us oldies.

janemc | @janemc | May 1 6:50pm

In reply to @lynnebgraham "@janemc Thank you so much, especially for caring about us oldies." + (show)

@lynnebgraham

I'm vintage too!!!

71 whether I want to admit it or not!

lynnebgraham | @lynnebgraham | May 2 4:59am

In reply to @janemc "@lynnebgraham I'm vintage too!!! 71 whether I want to admit it or not!" + (show)

@janemc
We are a very special rare bunch aren't we.

janemc | @janemc | May 2 8:09am

In reply to @lynnebgraham "@janemc We are a very special rare bunch aren't we." + (show)

@lynnebgraham

Never wanted to be one in a million, but I do love being in a flock of gorgeous, brilliant rare birds!

lynnebgraham | @lynnebgraham | May 2 6:41pm

Oh I just love that anology. May the flock be with you always.

Lori, Volunteer Mentor | @loribmt | May 4 9:27am

In reply to @janemc "@lynnebgraham Never wanted to be one in a million, but I do love being in a..." + (show)

@janemc This is a beautiful analogy!! 🥰

nohrt4me (Jean) | @nohrt4me | May 7 12:02pm

Helpful chat with my GP yesterday. Family docs are the ones who see mitral valve patients for years post-op and can best gauge how they're doing. Mine was encouraging, said of the four patients she could name right off the bat who'd had open-heart repair, all were doing well and glad they had the surgery (even the 87 yo!).

We did discuss surgical complications, second opinions, and post op restrictions and rehab. So I feel a bit more confident that going ahead with the surgery will reduce shortness of breath and restore a bit more energy once the rehab is completed.

The ET, of course, needs to be considered, and doc supported my decision not to let surgeons start cutting until they've consulted with oncology.

So, on to the next round of tests next week.

Meantime, my routine CBC last week looked pretty good. So there's that.

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