9 years ago today
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Srsly tho, this happened when I was not on the forum for classified reasons… where were you living at the time, and you mentioned prep at the hospital…were you living in North Carolina?
Is it possible to describe the before vs after (once the meds wore off)?
@89th said in 9 years ago today:
Srsly tho, this happened when I was not on the forum for classified reasons… where were you living at the time, and you mentioned prep at the hospital…were you living in North Carolina?
So in 2013 we moved to Westchester because I was too sick for city living. You can’t walk three blocks to Trader Joe’s, come back with two bags of groceries under each arm and a three year old on your shoulders with 20% lung function.
I first got listed at Columbia, which is 20 minutes from my house as long as it isn’t rush hour. The median wait time then at Columbia was very long, and they wanted to give me just one lung. My Columbia pulmonologist, obviously not on commission, suggested I go to Duke if I could swing it in my personal life. There the median wait time was shorter and they were going to give me two.
So we shuttered our house and moved to Chapel Hill. We were optimistic and thought we’d be there 3 months total but ended up there 15 months. My boy went to first grade and the first couple weeks of second grade there.
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Srsly tho, this happened when I was not on the forum for classified reasons… where were you living at the time, and you mentioned prep at the hospital…were you living in North Carolina?
Is it possible to describe the before vs after (once the meds wore off)?
@89th said in 9 years ago today:
Is it possible to describe the before vs after (once the meds wore off)?
There isn’t really a moment where you’re like ‘wow, I can breath again’. It comes back over a few weeks. You sort of have to learn how to breathe again. When you have very little lung function, especially with obstructive lung disease, you stop breathing with your diaphragm and start using these ancillary muscles higher up in your chest and shoulders. This just happens to you over time, obviously not something you do consciously. We actually practiced diaphragmatic breathing in rehab after transplant.
I do remember one special moment, the day I left the hospital (8/1/16), they took the last chest drainage tube out that day (I started with 7 drainage tubes after surgery). I was waiting to be discharged after they removed the tube and I walked down the hall to say goodbye to another transplant patient that was there. I realized that was the first time in years that I walked 100ft without a tube connecting me to a machine. (Remember I carried an oxygen concentrator 24/7 before transplant).
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One funny story you @89th will appreciate. I got my call on Friday, surgery early Saturday. Monday they took me out of ICU and put me in ‘step down’, a normal room. That room had a TV and that was the first night of the GOP convention of 2016 where Trump was nominated. My nurse, a middle aged African American lady, was in my room at the time and I said “Oh no, I died in surgery and this is hell.’ She cracked up and I got great service from her for the next two weeks.
Thank you for your attention to this matter.
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One funny story you @89th will appreciate. I got my call on Friday, surgery early Saturday. Monday they took me out of ICU and put me in ‘step down’, a normal room. That room had a TV and that was the first night of the GOP convention of 2016 where Trump was nominated. My nurse, a middle aged African American lady, was in my room at the time and I said “Oh no, I died in surgery and this is hell.’ She cracked up and I got great service from her for the next two weeks.
@jon-nyc said in 9 years ago today:
One funny story you @89th will appreciate. I got my call on Friday, surgery early Saturday. Monday they took me out of ICU and put me in ‘step down’, a normal room. That room had a TV and that was the first night of the GOP convention of 2016 where Trump was nominated. My nurse, a middle aged African American lady, was in my room at the time and I said “Oh no, I died in surgery and this is hell.’ She cracked up and I got great service from her for the next two weeks.
lol that's great
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One funny story you @89th will appreciate. I got my call on Friday, surgery early Saturday. Monday they took me out of ICU and put me in ‘step down’, a normal room. That room had a TV and that was the first night of the GOP convention of 2016 where Trump was nominated. My nurse, a middle aged African American lady, was in my room at the time and I said “Oh no, I died in surgery and this is hell.’ She cracked up and I got great service from her for the next two weeks.
@jon-nyc said in 9 years ago today:
One funny story you @89th will appreciate. I got my call on Friday, surgery early Saturday. Monday they took me out of ICU and put me in ‘step down’, a normal room. That room had a TV and that was the first night of the GOP convention of 2016 where Trump was nominated. My nurse, a middle aged African American lady, was in my room at the time and I said “Oh no, I died in surgery and this is hell.’ She cracked up and I got great service from her for the next two weeks.
Great story, previously unheard.
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One funny story you @89th will appreciate. I got my call on Friday, surgery early Saturday. Monday they took me out of ICU and put me in ‘step down’, a normal room. That room had a TV and that was the first night of the GOP convention of 2016 where Trump was nominated. My nurse, a middle aged African American lady, was in my room at the time and I said “Oh no, I died in surgery and this is hell.’ She cracked up and I got great service from her for the next two weeks.
@jon-nyc Ha, great story about the debate. And thanks for the other insights, really happy for you of course that this all worked out, and glad you were able to make the move to Chapel Hill.
Was there any part of you that wanted to stay in NC since you had been there for 15 years and your boy was in school? I'd imagine the "this is temporary" feeling never wore off so it was natural to rebound back to NYC.
And since I'm known for asking too many questions, how was this on Rachel back then?
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Yeah we always intended to return. Rachel’s job was in NY. We were fortunate they let her work remotely when that wasn’t a thing in her industry. She had to do photo shoots in LA and Paris (her client for a decade was L’Oreal) so my sisters took FMLA and stayed with me on those weeks. It was complicated because I needed a caregiver if I got the call, and we had a six year old. We got babysitters to hang with the boy in summer and after school.
It wasn’t a huge burden for her otherwise. I could still make dinner and do the laundry, etc.
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We worked it out that when I got the call, my middle sister would leave the that day or the next if it was late. She could get to us in 5 hrs. That way there was someone to be with me in the hospital and someone to look after the boy. Then my older sister would come relieve her after a week. Fortunately they had kind and understanding bosses.
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@AndyD said in 9 years ago today:
Here's to the next 9.Do you know who the donor was? Is it all anonymous like the UK?
It’s anonymous but you can write to an organization that will forward a letter to the donor family. Then if they choose they can contact you (presumably if you give them your contact info in the letter).
