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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 janemc
janemc | @janemc | May 8 5:20am
In reply to @nohrt4me "Helpful chat with my GP yesterday. Family docs are the ones who see mitral valve patients..." + (show)
Profile picture for nohrt4me (Jean) @nohrt4me

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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@nohrt4me

Excellent progress!

And THANK YOU, Jean, for sharing your experience with us.

I for one am terrified by anything heart-related. To see you navigating this is inspiring.

Cheering you on!

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1 reply
Profile picture for nohrt4me (Jean)
nohrt4me (Jean) | @nohrt4me | May 8 7:48am
In reply to @janemc "@nohrt4me Excellent progress! And THANK YOU, Jean, for sharing your experience with us. I for one..." + (show)
Profile picture for janemc @janemc

@nohrt4me

Excellent progress!

And THANK YOU, Jean, for sharing your experience with us.

I for one am terrified by anything heart-related. To see you navigating this is inspiring.

Cheering you on!

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@janemc The lesson learned, I guess, is to know what expertise all these people bring to the table. My GP has the best communication skills and sees a much wider variety of patients over longer time periods than any of the specialists. So it seemed reasonable to ask her for a reality check about long-term benefits/complications.

The other thing is not to let anybody rush you. Take the time you need to absorb the info you need to make your decision. The cardiologists understand the mechanics, but only you can put it all in context to see how it will affect your life going forward.

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Profile picture for nohrt4me (Jean)
nohrt4me (Jean) | @nohrt4me | 20 hours ago

As I noted before, prepping for open-heart surgery is a process!

Had a CT scan and arterial sonograms, which revealed, among other fun new things, what looks like a cyst on pancreas. That's a bit worrisome, as the CT report recommended follow-up on that. I am disinclined to have any heart surgery until that's been checked out.

There is also some "scarring" on my lungs, so I have a pulmonary function test Thursday. I have a family history of COPD and asthma. Dad and Grandma both died of it. Grandma never smoked, I quit 41 years ago. So, again, not inclined toward surgery until the lung situation is figured out.

And narrowing of carotid arteries, which are less than 50 percent clogged, which is good, but they're concerned about the type of plaque that might be developing.

On the up side, circulation in my legs is great!

Anyhoo, lots more miles on this carcass than I thought, and I have to wonder, given the new info and the stuff I already knew about--scoliosis, degenerative lumbar spine, thyroid cysts, and ET--how much joy fixing the heart valve is going to bring me.

One day at a time. I am grateful they're testing the heck out of everything, but it does raise anxiety levels.

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2 replies
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lynnebgraham | @lynnebgraham | 9 hours ago
In reply to @nohrt4me "As I noted before, prepping for open-heart surgery is a process! Had a CT scan and..." + (show)
Profile picture for nohrt4me (Jean) @nohrt4me

As I noted before, prepping for open-heart surgery is a process!

Had a CT scan and arterial sonograms, which revealed, among other fun new things, what looks like a cyst on pancreas. That's a bit worrisome, as the CT report recommended follow-up on that. I am disinclined to have any heart surgery until that's been checked out.

There is also some "scarring" on my lungs, so I have a pulmonary function test Thursday. I have a family history of COPD and asthma. Dad and Grandma both died of it. Grandma never smoked, I quit 41 years ago. So, again, not inclined toward surgery until the lung situation is figured out.

And narrowing of carotid arteries, which are less than 50 percent clogged, which is good, but they're concerned about the type of plaque that might be developing.

On the up side, circulation in my legs is great!

Anyhoo, lots more miles on this carcass than I thought, and I have to wonder, given the new info and the stuff I already knew about--scoliosis, degenerative lumbar spine, thyroid cysts, and ET--how much joy fixing the heart valve is going to bring me.

One day at a time. I am grateful they're testing the heck out of everything, but it does raise anxiety levels.

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@nohrt4me Hang in there Jean, one fix at a time. Just worrying when you go to check on one thing, they manage to find another. Chin up girl. We are a sturdy bunch of old girls. Big hug Lynne 🫂 🤗 ❤️ xx

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Profile picture for janemc
janemc | @janemc | 7 minutes ago
In reply to @nohrt4me "As I noted before, prepping for open-heart surgery is a process! Had a CT scan and..." + (show)
Profile picture for nohrt4me (Jean) @nohrt4me

As I noted before, prepping for open-heart surgery is a process!

Had a CT scan and arterial sonograms, which revealed, among other fun new things, what looks like a cyst on pancreas. That's a bit worrisome, as the CT report recommended follow-up on that. I am disinclined to have any heart surgery until that's been checked out.

There is also some "scarring" on my lungs, so I have a pulmonary function test Thursday. I have a family history of COPD and asthma. Dad and Grandma both died of it. Grandma never smoked, I quit 41 years ago. So, again, not inclined toward surgery until the lung situation is figured out.

And narrowing of carotid arteries, which are less than 50 percent clogged, which is good, but they're concerned about the type of plaque that might be developing.

On the up side, circulation in my legs is great!

Anyhoo, lots more miles on this carcass than I thought, and I have to wonder, given the new info and the stuff I already knew about--scoliosis, degenerative lumbar spine, thyroid cysts, and ET--how much joy fixing the heart valve is going to bring me.

One day at a time. I am grateful they're testing the heck out of everything, but it does raise anxiety levels.

Jump to this post

@nohrt4me

Learning all this must be overwhelming. I am so sorry, Jean.

But as awful as it sounds -- you have been living with these just-discovered issues for some time.

So obviously they are not as tough as YOU are.

Take a beat. Then, as you always do, find the best way forward.

Intense cat cuddling, STAT!

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