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.

nohrt4me (Jean) | @nohrt4me | Jul 30 12:20pm

In reply to @1pearl "Hi @nohrt4me , Yes, you are doing a great job checking into everything. Hopefully you get..." + (show)

@1pearl The less invasive procedure looked great, but apparently the clip they use does not adequately fix the problem, and for someone with clot risks, you want the best fix possible.

My cats are such a great distraction. Flora just got done licking out my yogurt cup. She loves that key lime yogurt! Now she's all tuckered out. She is almost 20 years old!

1pearl | @1pearl | Jul 30 3:02pm

In reply to @nohrt4me "@1pearl The less invasive procedure looked great, but apparently the clip they use does not adequately..." + (show)

Hi @nohrt4me ,
That is so good you researched and found that out ahead of time. You definitely want the best results and not needed more done!
Cats are wonderful. Our Pearl loves to drink the leftover milk in our cereal bowls before church on Sunday and last night, she found my husband’s chocolate chip ice cream bowl and licked that clean. I use a lot of bleach, ammonia, and vinegar cleaning stuff.
You are a great cat mama. Our beloved Snowy my daughter adopted from the local shelter here only made it to 18.5 years. Pearl is four years old now and we hope to have her for a very long time. She really is a great pet and comes to sit on my mat when we do stretch and yoga, appears at the foot of our bed sometime late when we are asleep almost nightly, and comes sits by me when I take my BP most mornings and find it completely normal at home.

nohrt4me (Jean) | @nohrt4me | Jul 31 6:53am

Haha, yes, Flora comes and sits on me during yoga time. Such a puzzle you've had with that finger. It's disconcerting when you know something is off but the doc's can't figure it out.

nohrt4me (Jean) | @nohrt4me | 4 days ago

Finally cleared all pre-op hurdles and consults, and surgery is scheduled for Sept 17.

I have to stop taking HU Sept 2 and get weekly platelet tracking. I will also start reducing exposure to colds and other bugs at that time, too, masking at the grocery store, not going visiting, etc. There are quite a lot of pre-op instructions that would apply to any heart patient, but those are the ones that affect those with ET.

Wish me luck!

Lori, Volunteer Mentor | @loribmt | 4 days ago

In reply to @nohrt4me "Finally cleared all pre-op hurdles and consults, and surgery is scheduled for Sept 17. I have..." + (show)

@nohrt4me Good morning, Jean! Well, phew, countdown begins, huh? Now it’s a matter of getting all the duckies in a row before your surgery. I’m sure your to-do list is lengthy. But also try not to exhaust yourself trying to get everything done!
I’ll be thinking of you and sending my strongest vibes for strength and healing, my friend!

Do you know how long you’ll be away from home for recovery?

nohrt4me (Jean) | @nohrt4me | 4 days ago

In reply to @loribmt "@nohrt4me Good morning, Jean! Well, phew, countdown begins, huh? Now it’s a matter of getting all..." + (show)

@loribmt They tell me four or five days in the hospital assuming no surprises. I am concerned about how much my husband will be able to do, so will have discussion about what kind of help I'll need at home with the nurse when she calls.

bluehorse | @bluehorse | 3 days ago

In reply to @nohrt4me "@loribmt They tell me four or five days in the hospital assuming no surprises. I am..." + (show)

@nohrt4me
81 here and also have ET CALR and a mitral and aortic valve issues both for about 2 years. Valves have not caused me any functional issues yet . Will be thinking of you and hoping for a smooth recovery. My cat and dog are a wonderful comfort to me also. Cat is the boss of course and retrieves a small ball very well, but I am unable to teach him to stay off the counter!

nohrt4me (Jean) | @nohrt4me | 3 days ago

In reply to @bluehorse "@nohrt4me 81 here and also have ET CALR and a mitral and aortic valve issues both..." + (show)

@bluehorse Thanks for yr note! Fingers crossed that yr mitral valve will not worsen. Most of the time it doesn't, I just hit the wrong number in the cardiology Lotto. Haha, I have three cats. They sure have their own agendas. Story in The Atlantic a few years back: "How Cats Used Humans to Conquer the World." Sounds about right ...
https://www.theatlantic.com/science/archive/2017/06/cat-domination/530685/

lynnebgraham | @lynnebgraham | 2 days ago

In reply to @nohrt4me "Finally cleared all pre-op hurdles and consults, and surgery is scheduled for Sept 17. I have..." + (show)

@nohrt4me Dear Jean, at last, a date for you to work towards. It has certainly been a wait and a lot to get through for you to get this date. Wishing you well and knowing your hubby and cats will spoil you when you get back home, after your operation. Yes, mask up and also use the medical wipes available at your stores. I have been using medical wipes since well before Covid. Big hugs and love from Tasmania.

nohrt4me (Jean) | @nohrt4me | 2 days ago

In reply to @lynnebgraham "@nohrt4me Dear Jean, at last, a date for you to work towards. It has certainly been..." + (show)

@lynnebgraham Thanks! I am relieved to have a date so I can get this over with. Now fingers crossed that they can repair rather than replace the mitral valve. Won't know until they get in there, but they tell me repair is easier and quicker.

I will be able to recover during the time of year here in Michigan when I most like to sit outdoors.

Best to you in Tasmania!

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