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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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)

@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!

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)

@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.

nohrt4me (Jean) | @nohrt4me | May 19 11:14am

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.

lynnebgraham | @lynnebgraham | May 19 9:55pm

In reply to @nohrt4me "As I noted before, prepping for open-heart surgery is a process! Had a CT scan and..." + (show)

@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

janemc | @janemc | May 20 7:18am

In reply to @nohrt4me "As I noted before, prepping for open-heart surgery is a process! Had a CT scan and..." + (show)

@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!

nohrt4me (Jean) | @nohrt4me | May 20 9:02am

In reply to @janemc "@nohrt4me Learning all this must be overwhelming. I am so sorry, Jean. But as awful as..." + (show)

@janemc Ha! I'm in great shape for the shape I'm in! There's a C&W song in there somewhere.

Taking a day to drive up north a ways to the pasty shop. Pasties are the dish of Michigan's Upper Peninsula region, and I need a taste of home!

Lori, Volunteer Mentor | @loribmt | May 20 9:03am

In reply to @nohrt4me "As I noted before, prepping for open-heart surgery is a process! Had a CT scan and..." + (show)

Good morning @nohrt4me. You know those really involved, evolving and unraveling mysteries we enjoy reading?? It’s always a shocker to realize we’re often the central character in our own page-turners. You’re just writing a whole new chapter right now…the medical saga. What would your life be without a little more intrigue! Eh?

I love the replies from @lynnebgraham and @janemc. There is wisdom in their words! We are a sturdy bunch of old girls and with that comes great tenacity, fortitude and resilience. We didn’t get to be old, ahem…Women of Age…by being dim-witted! My friends and I joke that: “We’re old, we’ve been through some ‘s**t, and we know things! So, bring it on! There’s nothing we can’t handle”. So whatever comes your way, Jean, you’ve got this! And then there’s your granny squad right behind you! 😂. Ok full disclosure…I’m not a granny but I’d have been a good one!

BTW, a good read that I’m just finishing; My Husband’s Wife by Alice Feeney. A friend, whose reading prowess I respect, recommended it. Wasn’t sure when I first started if it was going to be worth my while. But kept going…”did not see that coming!” Twists and turns for sure. Like life!

dd1949 | @dd1949 | May 20 9:19am

Hi, Jean -

I'm saddended to hear of Drs who REFUSE to listen to the wisdom and experience of their patients. Please stay committed to what you know you need for "your" body, peace, and confidence. It will make a profound difference in your body welcoming the surgery and recovering from it. We must remember that our health is dependent on a right balance between mind, body and spirit, because all three are interconnected and interdependent. Please keep being an advocate for yourself. Blessings on your continuing journey. Sending hugs and love.

Lori, Volunteer Mentor | @loribmt | May 20 9:21am

In reply to @nohrt4me "@janemc Ha! I'm in great shape for the shape I'm in! There's a C&W song in..." + (show)

@nohrt4me Ohhh Pasties! You caught my attention! That’s comfort food right there! Our daughter did her undergrad education at NMU so we had no shortage of fresh pasties when she’d head home for a weekend. Been decades now since I’ve had an authentic UP Pastie! Enjoy…do you eat them with catchup? Ask for a friend. LOL

Your comment, “I'm in great shape for the shape I'm in! There's a C&W song in there somewhere.”, made me chuckle. We’re all just one line away from a song!

I’m in great shape for the shape I’m in.
Nothin’s gonna bug me, I’ma take it on the chin!
Gonna cure my woes with a taste of home,
cuz I’m drivin’ to the UP for a pastie din…😂

When I was going through my medical drama with leukemia, the song that kept running through my head was Bad Blood by Neil Sedaka. 🩸 Then after the transplant when I’d have routine follow-ups, I’d take a little poetic license with Kenny Rogers and the 1st Edition’s “I just dropped in to see what condition my remission is in”. 😅

Have a great day! Say Hey to the UP, eh? (Currently I’m only about 30 minutes from the UP) ☺️

janemc | @janemc | May 20 9:37am

In reply to @nohrt4me "@janemc Ha! I'm in great shape for the shape I'm in! There's a C&W song in..." + (show)