An awkward visit from a colleague
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wrote on 9 Feb 2022, 00:44 last edited by
I’m very sorry to hear about your cousin. Just curious, was he evaluated for transplant?
Waitlists vary greatly by geography. Organ availability is the whole reason I went to Duke, when Columbia was 20m from my house. Also different programs have different eligibility requirements. Many won’t touch anyone over 65. Duke transplanted a 76 year old when I was there in 2016, who I believe is still alive.
It’s true that IPF patients decline very quickly, and they used to die on the wait list almost as a matter of course when it was run on a first-in, first-out basis. The switch to a life expectancy-based lung allocation score improved their lot substantially, but that obviously didn’t help your cousin.
And then the 5.8 year median survival post lung transplant means transplant itself is no panacea.
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wrote on 9 Feb 2022, 00:47 last edited by jon-nyc 2 Sept 2022, 01:04
By the way, I know a Philly-based pulmonologist on the falculty at Penn that you should see. He was a former board member of the Pulmonary Fibrosis foundation and does a lot of research on IPF including drug trials. I can’t stress enough the difference between good but generalist pulmonologist and a key opinion leader in the specific disease.
He’s actually on our (Alpha-1 Foundation’s) Medical and Scientific Advisory Committee, we asked him to join specifically to get the viewpoint of an expert in a different disease added to our group.
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wrote on 9 Feb 2022, 01:02 last edited by jon-nyc 2 Sept 2022, 02:27
When I was at Duke the median (not average) wait was less than a month. That means fully half the people who were listed got their transplant within 30 days.
Outliers (such as myself) either had a low lung allocation score (they weren’t as sick as the others), or they had a lot of Human Leukocyte Antigen (HLA) Antibodies, which render many donors an impossible match, or they were very tall and had trouble getting a size match. A combination of those three factors made me wait a year, which was extreme at Duke.
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By the way, I know a Philly-based pulmonologist on the falculty at Penn that you should see. He was a former board member of the Pulmonary Fibrosis foundation and does a lot of research on IPF including drug trials. I can’t stress enough the difference between good but generalist pulmonologist and a key opinion leader in the specific disease.
He’s actually on our (Alpha-1 Foundation’s) Medical and Scientific Advisory Committee, we asked him to join specifically to get the viewpoint of an expert in a different disease added to our group.
wrote on 9 Feb 2022, 01:11 last edited by jon-nyc 2 Sept 2022, 01:58@jon-nyc said in An awkward visit from a colleague:
By the way, I know a Philly-based pulmonologist on the falculty at Penn that you should see. He was a former board member of the Pulmonary Fibrosis foundation and does a lot of research on IPF including drug trials. I can’t stress enough the difference between good but generalist pulmonologist and a key opinion leader in the specific disease.
He’s actually on our (Alpha-1 Foundation’s) Medical and Scientific Advisory Committee, we asked him to join specifically to get the viewpoint of an expert in a different disease added to our group.
His name is Dr Michael F Beers and he runs the Beers Laboratory for Epithelial Cell Biology at U Penn
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wrote on 9 Feb 2022, 01:19 last edited by
His email is mfbeers@
I’m sold.
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@jon-nyc said in An awkward visit from a colleague:
By the way, I know a Philly-based pulmonologist on the falculty at Penn that you should see. He was a former board member of the Pulmonary Fibrosis foundation and does a lot of research on IPF including drug trials. I can’t stress enough the difference between good but generalist pulmonologist and a key opinion leader in the specific disease.
He’s actually on our (Alpha-1 Foundation’s) Medical and Scientific Advisory Committee, we asked him to join specifically to get the viewpoint of an expert in a different disease added to our group.
His name is Dr Michael F Beers and he runs the Beers Laboratory for Epithelial Cell Biology at U Penn
wrote on 9 Feb 2022, 22:19 last edited by@jon-nyc said in An awkward visit from a colleague:
@jon-nyc said in An awkward visit from a colleague:
By the way, I know a Philly-based pulmonologist on the falculty at Penn that you should see. He was a former board member of the Pulmonary Fibrosis foundation and does a lot of research on IPF including drug trials. I can’t stress enough the difference between good but generalist pulmonologist and a key opinion leader in the specific disease.
He’s actually on our (Alpha-1 Foundation’s) Medical and Scientific Advisory Committee, we asked him to join specifically to get the viewpoint of an expert in a different disease added to our group.
His name is Dr Michael F Beers and he runs the Beers Laboratory for Epithelial Cell Biology at U Penn
Thank you Jon -- we always try to connect with top docs. You're absolutely correct about the difference. I'll contact his office.
As for my cousins, I don't know whether they looked at transplants.
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wrote on 9 Feb 2022, 22:52 last edited by jon-nyc 2 Sept 2022, 22:52
Ha - I’ll be with 10,000 of them in May in San Francisco.
I’m actually speaking at the American Thoracic Society’s convention this year.
"You never know what worse luck your bad luck has saved you from."
-Cormac McCarthy -
Ha - I’ll be with 10,000 of them in May in San Francisco.
I’m actually speaking at the American Thoracic Society’s convention this year.
wrote on 9 Feb 2022, 22:54 last edited by@jon-nyc said in An awkward visit from a colleague:
Ha - I’ll be with 10,000 of them in May in San Francisco.
I’m actually speaking at the American Thoracic Society’s convention this year.
Cool shit.
I spent a month on the pulmonary service back when I was in training (and another 6 months in the respiratory ICU). It was a remarkable time and I learned SO much physiology.
Probably the most intense time of my training - but it was so good.
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Ha - I’ll be with 10,000 of them in May in San Francisco.
I’m actually speaking at the American Thoracic Society’s convention this year.
wrote on 10 Feb 2022, 05:05 last edited by@jon-nyc said in An awkward visit from a colleague:
Ha - I’ll be with 10,000 of them in May in San Francisco.
I’m actually speaking at the American Thoracic Society’s convention this year.
So pleased to see this. Good for you, and good for them. Let us know how it goes. -
wrote on 30 Apr 2022, 21:56 last edited by
"Tom" dropped by this afternoon. Uninvited, he just "happened to be in the neighborhood."
We had a pleasant enough conversation, and his Alzheimer's was not really apparent. We talked about old times, etc.
And then, he seemed to forget how it was that we met, and when. And then, he started talking about his boy scout troop, figuring that I'd know the people he was talking about.
And then, I showed him a picture that I took this week. It was me, and 4 guys that we used to work with. We had the "geezer's breakfast."
He was surprised that I knew these people - even though Tom, myself, and the 4 other geezers worked together for about 6 years. Hell, one of them was his partner for 10 years.
He was the guy who got me the job in private practice, and he had no recollection of that either. However, he was able to remember his service in the Navy, in the mid 1970s.
Sad.
He was always "weird," but this is sad.
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"Tom" dropped by this afternoon. Uninvited, he just "happened to be in the neighborhood."
We had a pleasant enough conversation, and his Alzheimer's was not really apparent. We talked about old times, etc.
And then, he seemed to forget how it was that we met, and when. And then, he started talking about his boy scout troop, figuring that I'd know the people he was talking about.
And then, I showed him a picture that I took this week. It was me, and 4 guys that we used to work with. We had the "geezer's breakfast."
He was surprised that I knew these people - even though Tom, myself, and the 4 other geezers worked together for about 6 years. Hell, one of them was his partner for 10 years.
He was the guy who got me the job in private practice, and he had no recollection of that either. However, he was able to remember his service in the Navy, in the mid 1970s.
Sad.
He was always "weird," but this is sad.
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wrote on 1 May 2022, 05:20 last edited by
My dad's mom had one of the worst cases her doctor had ever seen. Everyone took it pretty hard, but the way my dad and my uncle handled it was pretty incredible, all things considering.
Ditto what Mark said.
