5 years ago tonight

[89th]

@xenon said in 5 years ago tonight:

I pieced this one together from past posts. Glad it all worked out, Jon.

I have most of the puzzle pieces as well, but the "I remember where I was" comment above makes me curious about the narrative/timeline of events.

[LuFins Dad]

5 years is actually a huge mark for transplants, isn’t it?

[jon-nyc]

@89th said in 5 years ago tonight:

So this was during my hiatus, mind providing a bit of a recap? But no spoilers plz! Don't want to ruin the ending.

I got a bilateral lung transplant after quite a long wait. I had moved to Durham to get it done at Duke thinking I’d be there 3-4 months, I was there 15 months.

[jon-nyc]

@lufins-dad said in 5 years ago tonight:

5 years is actually a huge mark for transplants, isn’t it?

It’s not an out-of-the-woods sign like with some cancers. The risk of dying from infection or rejection is pretty stable and pretty material year after year.

Lung transplants have the worst prognosis of all the solid organ transplants. Median survival is something like 5.8 years. I should do much better than that though.

[89th]

@jon-nyc said in 5 years ago tonight:

@89th said in 5 years ago tonight:

So this was during my hiatus, mind providing a bit of a recap? But no spoilers plz! Don't want to ruin the ending.

I got a bilateral lung transplant after quite a long wait. I had moved to Durham to get it done at Duke thinking I’d be there 3-4 months, I was there 15 months.

Thanks! I think you hugged me like 6 years ago in that bar in Arlington but I doubt that is correlated.

[jon-nyc]

More like 10+ years ago. I was in Arlington visiting my Dad when he lived with my sister, which was 2009-2011.

[Catseye3]

Was that the photo of Jon either kissing or being kissed on the cheek by . . . the other guy? Great shot!

[jon-nyc]

Improv got the shot. He’ll probably magically show up and post it any minute now. lol

[Friday]

Oh.

Re-reading that made me so nostalgic. I really miss all those people.

Jon, congratulations on your 5 year anniversary.

[Klaus]

Wow. Almost everything seems to have changed within five years. For instance, Mik wrote at the time:

He's young, strong and smart.

[Klaus]

Has anything significant about treatment options changed/improved in the last 5 years? Is kidney failure an issue at this point?

[jon-nyc]

Not really and yes. I’m already at stage 3 CKD. It’s very common for lung transplant patients to need a kidney at some point.

[Axtremus]

Congratulations!
Glad we get to have you with us for these extra years!

[George K]

@jon-nyc said in 5 years ago tonight:

Lung transplants have the worst prognosis of all the solid organ transplants. Median survival is something like 5.8 years. I should do much better than that though.

I may have mentioned this to Jon, or perhaps posted publicly....

About 6 years ago, I was giving "anesthesia" for an organ harvest. If someone was an organ donor, a team would come from one of the teaching transplant centers in Chicago, and harvest the organs that were suitable for transplant. My job was to keep the patient "alive" - hemodynamically stable and well oxygenated while they took the organs that needed a blood supply. Once they clamped the aorta, and the heart stopped, I was done, and I'd leave. The team would spend another couple of hours after I'd gone.

Anyhow, the surgeon was a pleasant lady from Northwestern. After I was "relieved," and she was waiting for someone else to harvest the liver, I believe, I pulled her aside and told her that I have a friend who needs a lung transplant, and told her the disease.

"So, how do these folks do?"

"⅓. ⅓. ⅓," she said. "One out of three do great ( ~ five years), one out of three do so-so, with multiple relapses/rejections, and one out of three do crappy."

[brenda]

Wow. Five years already. Our Jon will chart new territory for his own version of a long hauler, living an extraordinary number of years post transplant.

Congrats, Jon! Here's to many more years.

[89th]

@catseye3 said in 5 years ago tonight:

Was that the photo of Jon either kissing or being kissed on the cheek by . . . the other guy? Great shot!

Wow 10+ years, how time flies. And yes, Jon was kissing me on the cheek.

I still haven't washed that cheek.

[jodi]

5 years. So incredible. I remember the thread, but maybe not here, on the other board? I don’t remember what I was doing (but we had just moved to Maine, so I was probably overwhelmed).

[kluurs]

I just remember that for a couple of days, all of us were holding our collective breath waiting/praying/hoping to hear. I also remember thinking that Rachel must have really had it rough. And then wonderful news.

[mark]

@kluurs said in 5 years ago tonight:

I just remember that for a couple of days, all of us were holding our collective breath waiting/praying/hoping to hear. I also remember thinking that Rachel must have really had it rough. And then wonderful news.

+1

[Renauda]

I was on a break from the internet (and pretty much all contact with the outer world) at the time bush camping in BC. I actually didn't find out about the surgery until around Xmas time when it was mentioned in passing on another thread.

The main thing is that you, Jon, have done remarkably well healing and adapting to your new lease on life. Congratulations to you and your family.