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(Today)   Remember the passenger who landed the plane in Florida after the pilot had a medical issue? The second miracle is the pilot survived an aortic dissection   (today.com) divider line
    More: Followup, Surgery, ability of passenger Darren Harrison, Physician, Hospital, emergency personnel, Palm Beach International Airport, St. Mary's Medical Center, aortic dissection  
•       •       •

2508 clicks; posted to Main » on 18 May 2022 at 12:05 AM (6 weeks ago)   |   Favorite    |   share:  Share on Twitter share via Email Share on Facebook



48 Comments     (+0 »)
View Voting Results: Smartest and Funniest
 
2022-05-17 6:24:18 PM  
I have never heard of anyone surviving an aortic dissection occuring outside of a hospital.
 
2022-05-17 6:56:00 PM  
Dude survived 2 widowmakers in a day. He should buy a lottery ticket.
 
2022-05-17 7:41:11 PM  

eurotrader: I have never heard of anyone surviving an aortic dissection occuring outside of a hospital.


*raises hand*

I was going to the movies, and we stopped by an arcade, and suddenly a mule kicked me in the chest, and apparently I flew backwards. EMTs absolutely freaked when they got to me, and raced to the hospital, and then got me in, they packed me into ANOTHER ambulance and got me to Bay State Medical and literally the surgeon who saved my life was on his way to his car when his beeper went off. He'd already done a 10 hour day, and then he did 16 and half hours on me, replacing the valve that tore when the aorta blew like a bad tube, and then took a four hour nap, where nurses essentially poured blood products into me because I was still bleeding pretty badly. As I was alive when the surgeon woke up from his nap--after a 26 and change day previous--he did another 6 hours of surgery on me to get everything closed up.

I have an artificial valve, a synthetic ascending aorta, and a scar on my chest that means that I have to be real careful in the summer.

Surviving a dissection is a tiny club. If I recall, in 1996 there was like ONE other guy who survived a dissection, in the whole country, and that old bastiche was a tough li'l sum'b*tch. We wrote back and forth until he passed at somewhere around 86 years old.

It's a tiny club, but if you can get folks in quick enough--before they bleed so much that it sort of crushes the heart--you've got a much better survival rate nowadays. Not great by any means. I mean, the aorta is sort of big vessel and you kind of want it intact, and people die from them pretty damn often, but if you can get folks to a hospital soon enough, the odds improve greatly. The problem is pain, followed by unconsciousness, and if you don't get to a hospital soon, it's lights out. Lost a waitress to one last year, and she collapsed at work, and tried to pass it off as a dizzy spell, but she died of post surgery complications, not the aneurysm itself.

I got another aneurysm about six years ago, but this one they caught before it blew, which was nice. This time they replaced the section and then put in stents around all the neighboring vessels and threw in a sort of bypass with a piece of my vena cava to lower the pressure load. Oddly enough, the guy who did my second surgery was the son of the guy who had done my first. They also brought him last year when I went in with pseudo-endocarditus and they weren't sure if they were going to have to go in and clean out the infection, and even he wasn't looking forward to going back in because the whole thing is kind of a weird mess. Luckily, the infection responded really well--or badly since it keeps dying off--to antibiotics.

Good on him for making it. Like I said, we're a real tiny club.
 
2022-05-17 7:46:48 PM  
Weird thing: both times I had those aneurysm surgeries, I had a weird Vagus nerve hitch, which caused me to pass out if my head and neck cocked too far to one side at an angle. Be fine, and then suddenly just pass out. And then wake up immediately, because the pressure on the nerve was released, but trying to figure out WTF happened. Cleared up as the swelling had gone down in a few days post surgery, but weird that you can look at something wrong and pass out.
 
2022-05-17 7:49:56 PM  
There is a reason I pay $59 a year for flight for life insurance. Getting to a trauma center in under an hour really matters when needed and the only way that happens from my house is by helicopter. Hopefully never need but I do know a couple of cardiac surgeons that I would want to do the work.
 
2022-05-17 8:06:48 PM  
Gawd damn

That's incredible.
 
2022-05-17 9:57:37 PM  

hubiestubert: eurotrader: I have never heard of anyone surviving an aortic dissection occuring outside of a hospital.

*raises hand*

I was going to the movies, and we stopped by an arcade, and suddenly a mule kicked me in the chest, and apparently I flew backwards. EMTs absolutely freaked when they got to me, and raced to the hospital, and then got me in, they packed me into ANOTHER ambulance and got me to Bay State Medical and literally the surgeon who saved my life was on his way to his car when his beeper went off. He'd already done a 10 hour day, and then he did 16 and half hours on me, replacing the valve that tore when the aorta blew like a bad tube, and then took a four hour nap, where nurses essentially poured blood products into me because I was still bleeding pretty badly. As I was alive when the surgeon woke up from his nap--after a 26 and change day previous--he did another 6 hours of surgery on me to get everything closed up.

I have an artificial valve, a synthetic ascending aorta, and a scar on my chest that means that I have to be real careful in the summer.

Surviving a dissection is a tiny club. If I recall, in 1996 there was like ONE other guy who survived a dissection, in the whole country, and that old bastiche was a tough li'l sum'b*tch. We wrote back and forth until he passed at somewhere around 86 years old.

It's a tiny club, but if you can get folks in quick enough--before they bleed so much that it sort of crushes the heart--you've got a much better survival rate nowadays. Not great by any means. I mean, the aorta is sort of big vessel and you kind of want it intact, and people die from them pretty damn often, but if you can get folks to a hospital soon enough, the odds improve greatly. The problem is pain, followed by unconsciousness, and if you don't get to a hospital soon, it's lights out. Lost a waitress to one last year, and she collapsed at work, and tried to pass it off as a dizzy spell, but she died of post surgery complications, not the aneurysm itself.

I got another aneurysm about six years ago, but this one they caught before it blew, which was nice. This time they replaced the section and then put in stents around all the neighboring vessels and threw in a sort of bypass with a piece of my vena cava to lower the pressure load. Oddly enough, the guy who did my second surgery was the son of the guy who had done my first. They also brought him last year when I went in with pseudo-endocarditus and they weren't sure if they were going to have to go in and clean out the infection, and even he wasn't looking forward to going back in because the whole thing is kind of a weird mess. Luckily, the infection responded really well--or badly since it keeps dying off--to antibiotics.

Good on him for making it. Like I said, we're a real tiny club.


Dayum man!
 
2022-05-17 10:30:03 PM  

hubiestubert: eurotrader: I have never heard of anyone surviving an aortic dissection occuring outside of a hospital.

*raises hand*

I was going to the movies, and we stopped by an arcade, and suddenly a mule kicked me in the chest, and apparently I flew backwards. EMTs absolutely freaked when they got to me, and raced to the hospital, and then got me in, they packed me into ANOTHER ambulance and got me to Bay State Medical and literally the surgeon who saved my life was on his way to his car when his beeper went off. He'd already done a 10 hour day, and then he did 16 and half hours on me, replacing the valve that tore when the aorta blew like a bad tube, and then took a four hour nap, where nurses essentially poured blood products into me because I was still bleeding pretty badly. As I was alive when the surgeon woke up from his nap--after a 26 and change day previous--he did another 6 hours of surgery on me to get everything closed up.

I have an artificial valve, a synthetic ascending aorta, and a scar on my chest that means that I have to be real careful in the summer.

Surviving a dissection is a tiny club. If I recall, in 1996 there was like ONE other guy who survived a dissection, in the whole country, and that old bastiche was a tough li'l sum'b*tch. We wrote back and forth until he passed at somewhere around 86 years old.

It's a tiny club, but if you can get folks in quick enough--before they bleed so much that it sort of crushes the heart--you've got a much better survival rate nowadays. Not great by any means. I mean, the aorta is sort of big vessel and you kind of want it intact, and people die from them pretty damn often, but if you can get folks to a hospital soon enough, the odds improve greatly. The problem is pain, followed by unconsciousness, and if you don't get to a hospital soon, it's lights out. Lost a waitress to one last year, and she collapsed at work, and tried to pass it off as a dizzy spell, but she died of post surgery complications, not the aneurysm itself.

I got another aneurysm about six years ago, but this one they caught before it blew, which was nice. This time they replaced the section and then put in stents around all the neighboring vessels and threw in a sort of bypass with a piece of my vena cava to lower the pressure load. Oddly enough, the guy who did my second surgery was the son of the guy who had done my first. They also brought him last year when I went in with pseudo-endocarditus and they weren't sure if they were going to have to go in and clean out the infection, and even he wasn't looking forward to going back in because the whole thing is kind of a weird mess. Luckily, the infection responded really well--or badly since it keeps dying off--to antibiotics.

Good on him for making it. Like I said, we're a real tiny club.


I was just stopping in to see you were still with us. I remember that story, and the headline immediately brought it back.
Rock on.
Keep your knives sharp.
 
2022-05-18 12:14:58 AM  
That is very good news. I wish both Men the best.
 
2022-05-18 12:22:11 AM  
Not miracles. Events that have been planned for and engineered by humans, and have happened multiple times, proving how possible they are.
 
2022-05-18 12:26:17 AM  
Cardiac  critical care RN here.  I deal with pre and post OP cardiac PTs. He, and the staff that cared for him need to buy a lottery ticket right now.
 
2022-05-18 12:27:27 AM  

hubiestubert: eurotrader: I have never heard of anyone surviving an aortic dissection occuring outside of a hospital.

*raises hand*

I was going to the movies, and we stopped by an arcade, and suddenly a mule kicked me in the chest, and apparently I flew backwards. EMTs absolutely freaked when they got to me, and raced to the hospital, and then got me in, they packed me into ANOTHER ambulance and got me to Bay State Medical and literally the surgeon who saved my life was on his way to his car when his beeper went off. He'd already done a 10 hour day, and then he did 16 and half hours on me, replacing the valve that tore when the aorta blew like a bad tube, and then took a four hour nap, where nurses essentially poured blood products into me because I was still bleeding pretty badly. As I was alive when the surgeon woke up from his nap--after a 26 and change day previous--he did another 6 hours of surgery on me to get everything closed up.

I have an artificial valve, a synthetic ascending aorta, and a scar on my chest that means that I have to be real careful in the summer.

Surviving a dissection is a tiny club. If I recall, in 1996 there was like ONE other guy who survived a dissection, in the whole country, and that old bastiche was a tough li'l sum'b*tch. We wrote back and forth until he passed at somewhere around 86 years old.


Wow man.

pbs.twimg.comView Full Size
 
2022-05-18 12:31:04 AM  
Total Chad.
 
2022-05-18 12:31:44 AM  

eurotrader: There is a reason I pay $59 a year for flight for life insurance. Getting to a trauma center in under an hour really matters when needed and the only way that happens from my house is by helicopter. Hopefully never need but I do know a couple of cardiac surgeons that I would want to do the work.


That sucks, I've got 4 level 1 trauma centers that are all 28-33 minutes Google time from my house, I could make 3 of them in under 20 minutes in an emergency.
 
2022-05-18 12:32:13 AM  
O_O
 
2022-05-18 12:51:16 AM  
Would Garp say the plane is now the safest in the world or due for a disaster?
 
2022-05-18 12:53:15 AM  
TMZ is going to be staking out the hospital, because you know his friend will come to see him, and then they will catch him.
 
2022-05-18 12:54:37 AM  
Wow, miracles do happen! This guy needs to buy a lottery ticket
 
2022-05-18 12:56:22 AM  
That's a Muckin Afazin outcome. I wonder what the odds are for experiencing either of those situations. Imagine the odds that both of those things happen at once, in the same place.
 
2022-05-18 12:57:29 AM  
Even crazier, the surgery was performed by a dental hygienist who was talked through it over tik tok videos.
 
2022-05-18 1:09:37 AM  

eurotrader: I have never heard of anyone surviving an aortic dissection occuring outside of a hospital.


Richie Faulkner, the lead guitar player for Judas Priest, suffered an aortic rupture on stage back in October.  In the middle of a guitar solo, no less.  There just happened to be a hospital nearby that specialized in the heart and lungs, and after like 11 hours of surgery he survived.  Surviving a rupture is even more rare than a dissection, like 90% of the people die before even reaching a hospital, and over 60% of those that do make it to the hospital alive end up dying from it.

/ dude ruptured his aorta mid-solo and still finished the song before leaving the stage
// it doesn't get any more metal than that
 
2022-05-18 1:10:12 AM  

hubiestubert: eurotrader: I have never heard of anyone surviving an aortic dissection occuring outside of a hospital.

*raises hand*

I was going to the movies, and we stopped by an arcade, and suddenly a mule kicked me in the chest, and apparently I flew backwards. EMTs absolutely freaked when they got to me, and raced to the hospital, and then got me in, they packed me into ANOTHER ambulance and got me to Bay State Medical and literally the surgeon who saved my life was on his way to his car when his beeper went off. He'd already done a 10 hour day, and then he did 16 and half hours on me, replacing the valve that tore when the aorta blew like a bad tube, and then took a four hour nap, where nurses essentially poured blood products into me because I was still bleeding pretty badly. As I was alive when the surgeon woke up from his nap--after a 26 and change day previous--he did another 6 hours of surgery on me to get everything closed up.

I have an artificial valve, a synthetic ascending aorta, and a scar on my chest that means that I have to be real careful in the summer.

Surviving a dissection is a tiny club. If I recall, in 1996 there was like ONE other guy who survived a dissection, in the whole country, and that old bastiche was a tough li'l sum'b*tch. We wrote back and forth until he passed at somewhere around 86 years old.

It's a tiny club, but if you can get folks in quick enough--before they bleed so much that it sort of crushes the heart--you've got a much better survival rate nowadays. Not great by any means. I mean, the aorta is sort of big vessel and you kind of want it intact, and people die from them pretty damn often, but if you can get folks to a hospital soon enough, the odds improve greatly. The problem is pain, followed by unconsciousness, and if you don't get to a hospital soon, it's lights out. Lost a waitress to one last year, and she collapsed at work, and tried to pass it off as a dizzy spell, but she died of post surgery complications, not the aneurysm itself.

I got another aneurysm about six years ago, but this one they caught before it blew, which was nice. This time they replaced the section and then put in stents around all the neighboring vessels and threw in a sort of bypass with a piece of my vena cava to lower the pressure load. Oddly enough, the guy who did my second surgery was the son of the guy who had done my first. They also brought him last year when I went in with pseudo-endocarditus and they weren't sure if they were going to have to go in and clean out the infection, and even he wasn't looking forward to going back in because the whole thing is kind of a weird mess. Luckily, the infection responded really well--or badly since it keeps dying off--to antibiotics.

Good on him for making it. Like I said, we're a real tiny club.


A genuine CSB.
 
2022-05-18 1:16:49 AM  

hubiestubert: eurotrader:

Good on him for making it. Like I said, we're a real tiny club.

I kind of expected to see you here.
 
2022-05-18 1:31:42 AM  
my stepdad lived through one. Absolutely incredible dude landed the plane, paramedics got him and had time to save him (the pilot, I mean)

literally only minutes to live when that happens.
 
2022-05-18 1:42:15 AM  

eurotrader: I have never heard of anyone surviving an aortic dissection occuring outside of a hospital.


There's one type that splits the inner and outer linings of the aorta, so it's not a "bleed out" situation. However, the danger is that stagnant blood clotting, and the clots getting drawn back into the circulatory system, leading to stroke, heart attack, DVT, or pulmonary embolism.

Still a miracle!
 
2022-05-18 1:51:00 AM  
My HS physics teacher went to the doctor because one of his big toes was constantly tingling and driving him nuts.

Turned out to be an aneurysm on his thoracic aorta that was putting pressure on the spinal cord.

One of those situations where you're feeling okay, they take an X-ray or MRI, then wheel you directly to the OR.
 
2022-05-18 1:56:44 AM  
Wow, that's the way I'm probably going to go in about 15ish years give or take.  Nice to know that people survive those.
 
2022-05-18 1:58:58 AM  

dkulprit: Wow, that's the way I'm probably going to go in about 15ish years give or take.  Nice to know that people survive those.


I should pick up flying or become a school bus driver someplace that has lots of cliffs.

So I can fulfill that joke:

I want to go peacefully like my grandpa in his sleep, not like his passengers screaming in the back.
 
2022-05-18 3:24:24 AM  
''Why me? Why did I not die?'" he said. "I'm sure I'll get the answer one day, but yes, there's a purpose behind it.'
Or you just got very, very lucky.
Any landing you can walk away from...
 
2022-05-18 4:00:25 AM  
If you survive an erotic dissection your mortician is doing it wrong.
 
2022-05-18 4:59:31 AM  
hubiestubert:

Do you mind me asking if it was a genetic thing, or high blood pressure or something? Or can I just like, get mule kicked in the chest randomly and just die?
 
2022-05-18 5:15:25 AM  

Dedmon: hubiestubert:

Do you mind me asking if it was a genetic thing, or high blood pressure or something? Or can I just like, get mule kicked in the chest randomly and just die?


Aortic dissection means blood flow literally dissects and splits through the layers of the aorta.  Reasons why that might happen include long-standing high blood pressure pushing against those aortic walls, weak connective tissues in the aortic walls like Marfan syndrome, crappy aortic walls like long term smokers get and trauma which I think is classically car crash smacking your chest on the driver wheel or something like that.

If you want to know what Marfan syndrome looks like, that Holmgren guy on Gonzaga basketball totally has it.
 
2022-05-18 6:18:23 AM  

Dedmon: hubiestubert:

Do you mind me asking if it was a genetic thing, or high blood pressure or something? Or can I just like, get mule kicked in the chest randomly and just die?


It's a thinning of the aorta, which can happen with high blood pressure, or just dumb luck, like pretty much any aneurysm. You get one in the brain, you have a stroke. You can get one in your leg from trauma, and it's a whole lot of pain and life threatening.

My sister was doing some research--she got Gulf War Syndrome from her trip to those sweet and sunny lands--and while she was doing her research, she came across a few articles that suggested that children of troops exposed to Agent Orange have a higher than average chance of developing aneurysms of this sort. Which me Dad was exposed to. So, I got some thinner aortic walls. Which, have all been replaced, or shored up with stents, and the whole system has been taken down a notch for wear and tear with the addition of that li'l section of Vena Cava.

But, sadly, not all the symptoms of an impending aneurysm are necessarily readable by the patient. They're fairly easy to detect, but you have to get checked out in order for it to get caught. Most folks are just doing their thing when the thing gets weird. You might get a bit more tired than usual, or have some odd dizzy spells, but it's easy to pass those off as something else, so it's easy to miss. Much like the signs of an impending stroke.

Nature, she scary.
 
2022-05-18 6:56:21 AM  

eurotrader: I have never heard of anyone surviving an aortic dissection occuring outside of a hospital.


I know two who died within seconds (plus John Ritter), and two who've survived - one, whose wife is a nurse, and lived 5 min from the ER, and another who was coming into Dulles airport in an international flight got airlifted to immediate surgery.....it's a coin flip if you'll survive one.
 
2022-05-18 7:05:06 AM  

eurotrader: There is a reason I pay $59 a year for flight for life insurance. Getting to a trauma center in under an hour really matters when needed and the only way that happens from my house is by helicopter. Hopefully never need but I do know a couple of cardiac surgeons that I would want to do the work.


"Sorry, that was an out of network helicopter that picked you up.  That'll be $375,000 please."
 
2022-05-18 7:11:37 AM  
That's what happened to my dad. Sitting eating lunch one day when it tore. Just the inner wall. It was on a spot where the artery spit so the Saud there was nothing they could do.  It was a matter of time.
Dad lived about another 2 years.  We all knew it was coming eventually, and he had like a final tear that killed him a couple days later.  At least we were all with him.  Didn't seem like a pleasant way to go.
For those 2 years, he was extremely limited on what he could do, which he hated since he was always so active. And even then he was woefully unprepared.  I handled all the final affairs, and even with all that time of knowing he was going to die, I had to make all the funeral plans (there was absolutely none)  find his life insurance info, and a bunch of other stuff I really expected him and mom to have waiting in a folder but totally didn't.
 
2022-05-18 7:21:04 AM  

NuclearPenguins: Dude survived 2 widowmakers in a day. He should buy a lottery ticket.


I think he may have burned through all the luck he had in the bank...
 
2022-05-18 7:47:57 AM  
Not going to detail my personal story. Survivor February 2020 Type A. Just had my second open heart surgery at the beginning of May 2022 and still recovering. Bicuspid valve for me was my underlying cause. Well that and doctors who did not refer me to a cardiologist when they heard a heart murmur.

And in the end me just being stupid about it.  If your doctor says he hears a heart murmur get to a cardiologist.
 
2022-05-18 8:16:41 AM  

eurotrader: I have never heard of anyone surviving an aortic dissection occuring outside of a hospital.


god was obviously with him just like he was with the passenger who landed the plane.

/rolls eyes
 
2022-05-18 8:46:46 AM  

jmr61: eurotrader: I have never heard of anyone surviving an aortic dissection occuring outside of a hospital.

god was obviously with him just like he was with the passenger who landed the plane.

/rolls eyes


Jesus is my copilot?
 
2022-05-18 9:35:48 AM  

eurotrader: I have never heard of anyone surviving an aortic dissection occuring outside of a hospital.


My dad did.  His heart surgeon told him afterwards that they usually diagnose them in the autopsy and stressed just how incredibly lucky he was.  Since then he's had two other aneurysms repaired.
 
2022-05-18 9:45:56 AM  

labman: eurotrader: I have never heard of anyone surviving an aortic dissection occuring outside of a hospital.

My dad did.  His heart surgeon told him afterwards that they usually diagnose them in the autopsy and stressed just how incredibly lucky he was.  Since then he's had two other aneurysms repaired.


Damn. He's like two away from getting the free set of steak knives.

/After my second one, I think I'm good.
//I prefer my own knives anyway
 
2022-05-18 11:12:13 AM  
Must have been a tiny one. Yeah, that's a legit miracle.
 
2022-05-18 11:14:28 AM  

dmacaroon: If your doctor says he hears a heart murmur get to a cardiologist.


I'm not safe for cardiologists.  I was referred for a nuclear stress test many years ago after my GP suspected some weirdness.  The cardiologist pronounced me healthy, and then was killed in a car accident two weeks later.
 
2022-05-18 11:55:17 AM  
Not an aortic dissection but thought I'd tell this story as PSA/FYI. My grandfather had severe rheumatoid arthritis and was having a particularly bad flare up for about a week so he decided to go to the doctor. Turns out he had had a heart attack a week prior and 3 of his 4 arteries going to his heart were blocked completely and the 4th was 90% blocked.  He had just had a physical 3 months before and there had been no signs of blockage in any of the tests. He ended up dying next day, just hours before he was scheduled to get his angioplasty. So please get checked if you are having a bad flare up, just in case.

//also FYI-my dad thought he has post Polio syndrome for years, turns out it was leukemia. //Please go to the doc on a regular basis, if you can. Symptoms can be deceiving.
 
2022-05-18 1:29:58 PM  

rhondajeremy: Not an aortic dissection but thought I'd tell this story as PSA/FYI. My grandfather had severe rheumatoid arthritis and was having a particularly bad flare up for about a week so he decided to go to the doctor. Turns out he had had a heart attack a week prior and 3 of his 4 arteries going to his heart were blocked completely and the 4th was 90% blocked.  He had just had a physical 3 months before and there had been no signs of blockage in any of the tests. He ended up dying next day, just hours before he was scheduled to get his angioplasty. So please get checked if you are having a bad flare up, just in case.

//also FYI-my dad thought he has post Polio syndrome for years, turns out it was leukemia. //Please go to the doc on a regular basis, if you can. Symptoms can be deceiving.


I wish it were that easy.  5 years later and 10's of thousands out of pocket I ended up finding out it was Ehlers danlos type 4.

I figured it out.  Not my doctors.

Had to spend thousands on a specific genetic test out of pocket because none of my doctors would order it.  I just a bunch of disorders that are completely separate... but not EDS.  Even those disorders added up = EDS.

Once confirmed then they ordered their own tests and I basically have nothing to show for it because there's only like 5 doctors in US that treat it and none of them are in network.
 
2022-05-18 3:35:24 PM  
As someone who was just diagnosed with an Aortic Dilation and is .5 cm away from open heart surgery, this article definately has my interest.
 
2022-05-18 4:35:30 PM  

dkulprit: rhondajeremy: Not an aortic dissection but thought I'd tell this story as PSA/FYI. My grandfather had severe rheumatoid arthritis and was having a particularly bad flare up for about a week so he decided to go to the doctor. Turns out he had had a heart attack a week prior and 3 of his 4 arteries going to his heart were blocked completely and the 4th was 90% blocked.  He had just had a physical 3 months before and there had been no signs of blockage in any of the tests. He ended up dying next day, just hours before he was scheduled to get his angioplasty. So please get checked if you are having a bad flare up, just in case.

//also FYI-my dad thought he has post Polio syndrome for years, turns out it was leukemia. //Please go to the doc on a regular basis, if you can. Symptoms can be deceiving.

I wish it were that easy.  5 years later and 10's of thousands out of pocket I ended up finding out it was Ehlers danlos type 4.

I figured it out.  Not my doctors.

Had to spend thousands on a specific genetic test out of pocket because none of my doctors would order it.  I just a bunch of disorders that are completely separate... but not EDS.  Even those disorders added up = EDS.

Once confirmed then they ordered their own tests and I basically have nothing to show for it because there's only like 5 doctors in US that treat it and none of them are in network.


Hopefully that'll change soon given the huge amount of people that seem to have been diagnosed in the past several years
 
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