An awkward visit from a colleague
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So if you had to choose between a visit from this guy or the conspiracy theory surgeon, which would you go with?
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So if you had to choose between a visit from this guy or the conspiracy theory surgeon, which would you go with?
@lufins-dad said in An awkward visit from a colleague:
So if you had to choose between a visit from this guy or the conspiracy theory surgeon, which would you go with?
The surgeon. He may be nuts, but he's not nuts nuts.
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My grandmother got Alzheimer's hard. But she hung on for a very, very long time. It was weird for me and I was pretty young at the time; it was devastating for my parents, and many of my dad's siblings.
HardImpossible to know what to do, even when it's your own family member. -
My mum had dementia. It was just awful watching her deteriorate. Truly heartbreaking. On the positive side, her music kept her going - she never lost the ability to play the piano until right at the end.
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My mum had dementia. It was just awful watching her deteriorate. Truly heartbreaking. On the positive side, her music kept her going - she never lost the ability to play the piano until right at the end.
@doctor-phibes said in An awkward visit from a colleague:
My mum had dementia. It was just awful watching her deteriorate. Truly heartbreaking. On the positive side, her music kept her going - she never lost the ability to play the piano until right at the end.
I hope that music gave her some consolation.
My father, and his older brother and older sister all died around 69 - 70 years old from idiopathic pulmonary fibrosis. My oldest cousin just died from IPF as well in his later 60s. They were all heavy smokers when younger. Dad's younger brother and younger sister all lived into their early 80s, but had some degree of Alzheimer -- probably more mild cases and they endured it gracefully. They weren't completely lost, and faced it well. I suspect that had my father and his older sibs lived longer, they would have had Alzheimer's as well.
I hope I can face either -- both terrible ways to go... but genetically the cards are already dealt.
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Nice to see you, IT.
“I am fond of pigs. Dogs look up to us. Cats look down on us. Pigs treat us as equals.” ~Winston S. Churchill
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@mik said in An awkward visit from a colleague:
Nice to see you, IT.
Thanks, Mik! Nicer people than Liber Faciorum.
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@mik said in An awkward visit from a colleague:
Nice to see you, IT.
Funny... I was just reading his post and thinking "great to read more from IT!"
Howdy, friend. We live in Minnesota now... I re-started my TNCR activity in the Spring of 2020 when I was forced to work remotely and had access to public internet forums again! Now I continue to work remotely from Minnesoooooooota.
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IT - IPF is less of a death sentence than it used to be. The plurality of lung transplants I saw at Duke were IPF patients.
Before 2005 they mostly died waiting on the list because organ allocation was FIFO and their disease often progressed too quickly. Since then allocation is based on disease severity/life expectancy so they get better priority.
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IT - IPF is less of a death sentence than it used to be. The plurality of lung transplants I saw at Duke were IPF patients.
Before 2005 they mostly died waiting on the list because organ allocation was FIFO and their disease often progressed too quickly. Since then allocation is based on disease severity/life expectancy so they get better priority.
@jon-nyc said in An awkward visit from a colleague:
IT - IPF is less of a death sentence than it used to be. The plurality of lung transplants I saw at Duke were IPF patients.
Before 2005 they mostly died waiting on the list because organ allocation was FIFO and their disease often progressed too quickly. Since then allocation is based on disease severity/life expectancy so they get better priority.Yesterday my cousin died from IPF age 69-- he was twins to the cousin who passed away 6 months ag0 (middle of this thread).
So now we have a cluster -- my dad, his brother and sister, and the brother's twin sons...
I'm going to see a pulmonologist and try to get ahead of this if it happens at all -- autoimmune and pulmonary function testing, check ups every two years, hi res cat scans...
From some research by my cousin (sister to the twins), lung transplants have a 3 year waiting list, which is about the life span once IPF is diagnosed... 30,000 per year with a 100,000 waiting list; more available now due to opiod deaths... ugh.
What specifically is the medical community saying, other than it's fatal without lung transplant?
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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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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.
"You never know what worse luck your bad luck has saved you from."
-Cormac McCarthy -
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.
@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
"You never know what worse luck your bad luck has saved you from."
-Cormac McCarthy -
@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
@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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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.
@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.
@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.
