ET CALR looking at heart surgery

@lynnebgraham Wow, that's a big drop! Glad you are back on anagrelide as you had wanted. Surgery must create some havoc with blood levels, so maybe will take a few months for course correction?

How are you feeling? I still have my big old thyroid lump, too. The CT scan indicated it was pretty much the same size as last check, though.

I am not sure what gastroenterology will do to check out the cyst. They'll be calling in the next couple of weeks to schedule their looky-see.

No date for surgery, but would be surprised if it's before early August.

@lynnebgraham Wow, that's a big drop! Glad you are back on anagrelide as you had wanted. Surgery must create some havoc with blood levels, so maybe will take a few months for course correction?

How are you feeling? I still have my big old thyroid lump, too. The CT scan indicated it was pretty much the same size as last check, though.

I am not sure what gastroenterology will do to check out the cyst. They'll be calling in the next couple of weeks to schedule their looky-see.

No date for surgery, but would be surprised if it's before early August.

Good talk with oncology Friday. I have my questions answered and, much as I don't want to, I will be calling cardiology to schedule the heart valve repair.

If nothing else, this process has made me more open to why people might choose *not* to be treated for certain ailments, assuming they have done their due diligence. Just the pre-op tests to determine fitness for surgery are invasive, time-consuming, and very costly in the US. I am on a monthly installment plan for what Medicare Advantage does not pay, and I expect I'll be paying this off for the rest of my life once the co-pays from surgery and rehab are added.

In addition, while 95+% of people pull thru open-heart surgery, the aftermath comes with a variety of potential complications. I don't want to live forever, but I would like to make it to 80, and this is likely my best chance.

Off soapbox! Here are some things I asked that other ET patients in the same boat might want to know:

1. I have had ET x 20 years. If I have open heart surgery, is it likely I'm just going to develop leukemia or MF later on? In other words, should I bother with surgery at all given my age and ET?

Yes. Very unlikely I will progress. My ET has been well managed and monitored.

2. Are there risks my platelets will go out of whack after surgery?

Platelets will go up as part of the healing process and from being off HU 2 weeks before surgery. Blood levels will be checked frequently in the hospital, and I should be able to go back on HU about a week post op.

3. I will be on Eliquis post-op. What does that do to my aspirin therapy for ET?

I will not take aspirin with Eliquis, whether I take it short- or long-term. It will have same clor-fighting effects as aspirin.

4. I have to go off HU 2 weeks before surgery. Who's going to monitor my platelets and decide when to go back on?

Hemo will monitor blood weekly pre-op. She and cardio will resume HU about a week post-op.

I'll update once I'm through surgery, prob a month or two, and provide more info.

@nohrt4me

Thank you for sharing all you're learning, Jean. That's very helpful.

Stay strong! We're cheering for you!

@janemc Thanks. Today I am feeling ornery and ungrateful. Deep in my gut I don't want this, but my brain is calling the shots.

Good talk with oncology Friday. I have my questions answered and, much as I don't want to, I will be calling cardiology to schedule the heart valve repair.

If nothing else, this process has made me more open to why people might choose *not* to be treated for certain ailments, assuming they have done their due diligence. Just the pre-op tests to determine fitness for surgery are invasive, time-consuming, and very costly in the US. I am on a monthly installment plan for what Medicare Advantage does not pay, and I expect I'll be paying this off for the rest of my life once the co-pays from surgery and rehab are added.

In addition, while 95+% of people pull thru open-heart surgery, the aftermath comes with a variety of potential complications. I don't want to live forever, but I would like to make it to 80, and this is likely my best chance.

Off soapbox! Here are some things I asked that other ET patients in the same boat might want to know:

1. I have had ET x 20 years. If I have open heart surgery, is it likely I'm just going to develop leukemia or MF later on? In other words, should I bother with surgery at all given my age and ET?

Yes. Very unlikely I will progress. My ET has been well managed and monitored.

2. Are there risks my platelets will go out of whack after surgery?

Platelets will go up as part of the healing process and from being off HU 2 weeks before surgery. Blood levels will be checked frequently in the hospital, and I should be able to go back on HU about a week post op.

3. I will be on Eliquis post-op. What does that do to my aspirin therapy for ET?

I will not take aspirin with Eliquis, whether I take it short- or long-term. It will have same clor-fighting effects as aspirin.

4. I have to go off HU 2 weeks before surgery. Who's going to monitor my platelets and decide when to go back on?

Hemo will monitor blood weekly pre-op. She and cardio will resume HU about a week post-op.

I'll update once I'm through surgery, prob a month or two, and provide more info.

Collaborative medicine: what a concept! So glad to know that they offer that at Mayo. Universal charts were supposed to usher in a new era of doctors reading off the same page. Now AI, which sounds suspiciously like a souped-up version of Web MD, is supposed to read the universal chart and strain out pertinent info. Where will it all end?

Frannie allows limited tummy rubs, but is VERY people oriented. I am spoiling her rotten.

Graham Greene: "Our Man in Havana," a spy satire, a bit of a departure for him. I like the Cold War moral conundrums in his spy novels.

No steak, but made a real nice beef stew.

Thanks so much to @loribmt and @janemc for the encouragement. It is a confidence booster!

Hi @nohrt4me ,
Hope you are doing well. What is the status of your plan for dealing with your mitral valve now? I hope you were able to arrange the type of treatment you wanted. It is so important but difficult for us to communicate with doctors that really do not listen or even read the chart accurately.
Stay positive my friend.

@1pearl Thanks. I have an MRI sked in August to confirm that a pancreatic cyst found in the pre-op tests is not cancerous. Then I will be cleared for surgery. I have gathered info, done due diligence, and accepted that I will decline rapidly and die within a few years if I don't have the surgery. I would like to make it to 75 without having to use a wheel chair and oxygen. So, not feeling positive exactly, but I do believe I'm making a rational decision in opting for surgery. Beyond that, it's up to the docs to pull me through.