Mayo Clinic or Bust #stefiswallows
Donation protected
My name is Stefi and I'm a 28 year old single mother with Achalasia .
I never thought I would be one of those people to get sick. I've always been move, move, move so when I first started getting symptoms I assumed it would go away. Instead it got worse, and even frightening at times. In September, 4 years after my symptoms started, I was diagnosed with the rare, incurable, progressive disease called Achalasia.
Achalasia is a motility disease which can occur in patients from 2 years old to 92, but typically begins in the 40s. Carl Sagan had it, and Seattle Seahawks linebacker Malcolm Smith has it now. Our immune systems attack our esophagus tearing away at the cells which make the esophagus work. Over time we lose complete function of our esophagus from top to bottom with the most critical issue being the inability of the LES to relax to allow food or often even liquids into the stomach. Food backs up and painfully inflames us, and causes us to choke.
Many Achalasians suffer from frequent aspiration and pneumonia. We sleep sitting up in bed so that we don't choke, we often have to regurgitate food that didn't make it, and dating can be a real bitch when you can't eat dinner and you vomit a lot .
In recent months I have progressed quickly. I was put on a liquid diet of ensure, juices, and strained soups a month ago and I now even have difficulty keeping water down. In the last week I've lost 5lbs and there is worry about dehydration. Not to mention that I've had so many pricks this month that I make requests on where they put it (I'm talking about IVs not men)
There's no cure, but there are management treatments and I'm a perfect candidate for surgery. I'll never be able to regain the motility of my esophagus, but it will make it so that gravity can get the food and liquids into my stomach and should help me for 10-20 years. I will eat so many fish tacos in that time my next big concern will be mercury poisoning instead of not being able to swallow (also not a good selling point on dates).
Being as the disease is rare, so to is the surgery and with few patients to practice on there are surgeons who make mistakes causing even more complication and suffering for patients. Ain't nobody got time for that and since I want to be a philanthropical, president, activist, radio show host on Mars someday I don't have the time either, so naturally I want to get the right surgeon.
Here in the great state of Washington I was referred to a fantastic surgical center, but I'm scheduled at the end of March! I'm dropping weight, I can't eat pizza, and vomiting is a great past time, I've gotten quite good at it, but it just doesn't win me any friends. Today my primary care physician suggested I go to the Mayo clinic in Minnesota where people with my condition travel from all around the country for this surgery. He was as miffed as anyone that my surgery was so far out and he seemed pretty damn smart so I got the ball rolling immediately.
The only problem with going to the best surgeon so that I can swallow all the things is that I am broke as a joke. I'm a college student, single mom, bartender, and Geeks Who Drink (when they can drink instead of vomiting all over everything forever) Quizmaster. I need money for airfare, to stay in Minnesota while I recover (about two weeks) and to keep my bills paid up until I can return and make that monies. So I'm humbly asking for some help. Whatever money doesn't get used directly for all of the above will be donated to specialists working to learn more about Achalasia. There have been some great discoveries this year so maybe, just maybe someday there will be a cure.
Please help me to swallow all the things!
P.S. #stefiswallows is how I will follow my post-op swallowing adventures! Mmmmm frito chili pizza. Goin' gormet all the way!
I never thought I would be one of those people to get sick. I've always been move, move, move so when I first started getting symptoms I assumed it would go away. Instead it got worse, and even frightening at times. In September, 4 years after my symptoms started, I was diagnosed with the rare, incurable, progressive disease called Achalasia.
Achalasia is a motility disease which can occur in patients from 2 years old to 92, but typically begins in the 40s. Carl Sagan had it, and Seattle Seahawks linebacker Malcolm Smith has it now. Our immune systems attack our esophagus tearing away at the cells which make the esophagus work. Over time we lose complete function of our esophagus from top to bottom with the most critical issue being the inability of the LES to relax to allow food or often even liquids into the stomach. Food backs up and painfully inflames us, and causes us to choke.
Many Achalasians suffer from frequent aspiration and pneumonia. We sleep sitting up in bed so that we don't choke, we often have to regurgitate food that didn't make it, and dating can be a real bitch when you can't eat dinner and you vomit a lot .
In recent months I have progressed quickly. I was put on a liquid diet of ensure, juices, and strained soups a month ago and I now even have difficulty keeping water down. In the last week I've lost 5lbs and there is worry about dehydration. Not to mention that I've had so many pricks this month that I make requests on where they put it (I'm talking about IVs not men)
There's no cure, but there are management treatments and I'm a perfect candidate for surgery. I'll never be able to regain the motility of my esophagus, but it will make it so that gravity can get the food and liquids into my stomach and should help me for 10-20 years. I will eat so many fish tacos in that time my next big concern will be mercury poisoning instead of not being able to swallow (also not a good selling point on dates).
Being as the disease is rare, so to is the surgery and with few patients to practice on there are surgeons who make mistakes causing even more complication and suffering for patients. Ain't nobody got time for that and since I want to be a philanthropical, president, activist, radio show host on Mars someday I don't have the time either, so naturally I want to get the right surgeon.
Here in the great state of Washington I was referred to a fantastic surgical center, but I'm scheduled at the end of March! I'm dropping weight, I can't eat pizza, and vomiting is a great past time, I've gotten quite good at it, but it just doesn't win me any friends. Today my primary care physician suggested I go to the Mayo clinic in Minnesota where people with my condition travel from all around the country for this surgery. He was as miffed as anyone that my surgery was so far out and he seemed pretty damn smart so I got the ball rolling immediately.
The only problem with going to the best surgeon so that I can swallow all the things is that I am broke as a joke. I'm a college student, single mom, bartender, and Geeks Who Drink (when they can drink instead of vomiting all over everything forever) Quizmaster. I need money for airfare, to stay in Minnesota while I recover (about two weeks) and to keep my bills paid up until I can return and make that monies. So I'm humbly asking for some help. Whatever money doesn't get used directly for all of the above will be donated to specialists working to learn more about Achalasia. There have been some great discoveries this year so maybe, just maybe someday there will be a cure.
Please help me to swallow all the things!
P.S. #stefiswallows is how I will follow my post-op swallowing adventures! Mmmmm frito chili pizza. Goin' gormet all the way!
Organizer
Stefi Hailstorm
Organizer
Everett, WA
