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.

lynnebgraham | @lynnebgraham | Apr 20 8:45pm

In reply to @nohrt4me "@lynnebgraham Let us know how thyroid goes. Will be thinking about you." + (show)

❤️

Lori, Volunteer Mentor | @loribmt | Apr 21 8:18am

In reply to @nohrt4me "@lynnebgraham Let us know how thyroid goes. Will be thinking about you." + (show)

@nohrt4me
Good luck with all your tests today!! You’ve got this, gurl! 🥰

nohrt4me (Jean) | @nohrt4me | Apr 22 6:33am

Tests 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!

janemc | @janemc | Apr 22 7:52am

In reply to @nohrt4me "Tests went fine, top-notch cardiac group, excellent nurses with info, and surgeon is working with oncology...." + (show)

@nohrt4me

Thank you for sharing this wonderful update!!!!

nohrt4me (Jean) | @nohrt4me | Apr 28 9:43am

Well. This is going to be the proverbial "process."

My regular cardiologist sent me for tests (TEE and cardiac cath) at the hospital (see above). Then follow-up with "structural cardiologist" and cardiac surgeon. So three of these guys are in on the action now in addition to the two specialists who did the in-hospital tests last week. Quickly becoming a cast of thousands!

The structural cardiologist recommends prompt open-heart mitral valve repair to ward off imminent heart failure. They would only offer the less invasive intervention if I were closer to 80 and were much sicker. And then prognosis is worse.

So a next step would be to do the tests that the cardiac surgeon has ordered. He will assess overall surgical risks and has already said he would be in consultation with my oncologist, so at least there's that.

I'm still trying to process all this news and info, especially since the docs are all wary about promising any real quality of life improvements. I ask if I will I feel less short of breath, less fatigue, less dizzy. The answer is always, "It will get worse faster if you don't have the surgery."

Not feeling good about any of it, though I realize these people have to manage expectations, and there are a lot of variables that come with open-heart surgery.

I have a six-month check-in with my primary care doc in in a week. She must have quite a number of post-op heart patients and perhaps can offer more helpful info about outcomes.

Thanks for listening. I am grateful for the group, my friends, the cats. Taking a couple days of down time. Next week I might be grateful that these doctors are trying to keep me ticking. But today I feel stonewalled, and it's clear that I don't have unlimited time to spend info gathering.

Lori, Volunteer Mentor | @loribmt | Apr 28 12:40pm

In reply to @nohrt4me "Well. This is going to be the proverbial "process." My regular cardiologist sent me for tests..." + (show)

@nohrt4me Wowzee, Jean…that’s some news! Heart issues are way out of my wheelhouse so I can only commiserate with you, my friend. Tiz a lot of information to take in and process.

If there is the possibility of imminent heart failure then I think the writing is on the wall and there’s not much of a choice. Especially with the cadre of specialists all coming to the same conclusion. With the comments made, it appears they feel you’re young and healthy enough to tolerate the heart surgery. Obviously, you’d prefer the less invasive option but if that’s not really medically in your best interest that’s hard to argue with.

You might guess that there are a lot of conversations in Connect for Aortic Valve replacements.
Here is one discussion to get you started by one of my fellow mentors, Teresa @hopeful33250
https://connect.mayoclinic.org/discussion/aortic-valve-replacment/
More found here: https://connect.mayoclinic.org/search/

Wrapping you in a gentle hug this morning…lots to think about.

nohrt4me (Jean) | @nohrt4me | Apr 28 3:22pm

In reply to @loribmt "@nohrt4me Wowzee, Jean…that’s some news! Heart issues are way out of my wheelhouse so I can..." + (show)

@loribmt Thanks. Looks like the mitral valve people live in this group, so I am following: https://connect.mayoclinic.org/group/heart-rhythm-conditions/

I will post again here if there is anything else germane to ET that people might find helpful. Bottom line seems to be that you can be 71, have ET for many years and be on hydroxyurea, and still be seen as a decent surgical risk.

Lori, Volunteer Mentor | @loribmt | Apr 28 5:38pm

In reply to @nohrt4me "@loribmt Thanks. Looks like the mitral valve people live in this group, so I am following:..." + (show)

@nohrt4me I hope you find some helpful and reassuring information with the mitral valve group!
That’s not one of the groups I routinely follow but I certainly want to be part of your support system in any way that I can. So yes, please share what you find out along the way! Hugs!

janemc | @janemc | Apr 29 5:57am

In reply to @nohrt4me "@loribmt Thanks. Looks like the mitral valve people live in this group, so I am following:..." + (show)

@nohrt4me

Facing open heart surgery, you're making it a teaching opportunity for others.

You're one in a billion, jean.

It seems doubly unfair to hear you need this procedure, AND that it's not going to be a miracle cure. You have already had ENOUGH medical stuff!!!

As Lori notes, it's great that the doctors are working together. Your plan to get your PCP's advice is excellent.

You've made yourself a world-class expert on ET. You can master this too, jean.

We would all like to hug you, but we can't. So please be extra nice to yourself.

nohrt4me (Jean) | @nohrt4me | Apr 29 11:06am

Thanks for the encouragement, everyone.

One of the tests ordered as pre-op assessment is an echogram of legs and neck. As an ET patient with elevated clot risks, I'll be happy to get those results. I'm also hoping that the high lactase dehydrogenase (LDH) that I run might be explained by the cardiac care team in conjunction with oncology.

Still not committing to the big surgical decision, but the tests are probably worth it for anybody with ET exclusive of heart issues.

Please sign in or register to post a reply.