Marissa's Bucket List Campaign
Donation protected
Hello I'm Marissa!
When I was 6 months old I was diagnosed with Cystic Fibrosis a genetic disorder that causes the lungs and pancreas to be plugged with extra thick and sticky mucus. All that mucus makes it easy for infections to thrive and grow, so it's no surprise that i've spent most of my life doing treatments or in the hospital on antibiotics.
I was really lucky throughout my life, even though I was sick about every 3 months and required 2-3 weeks of antibiotics I still managed to live a life I am not only proud of, but with little to no regrets. My health was stable and followed a consistent pattern that let me finish college and even travel the world.
That was until August of 2016. I woke up one night and I couldn't breathe, my oxygen levels were reading in the mid to low 70%, so my dad carried me out to the car and my mom rushed down to the University of Michigan. It was less than a week later we learned that I had gone into end stage lung failure and a double lung transplant was my only option if I wanted to survive. I signed the paperwork to start the transplant process as soon as the doctor said he thought I'd make a great transplant candidate. The process didn’t go very smoothly for me, I ended up on life support and in a coma for about three weeks. The doctors were going to take me off the list to try and give my body some time to recover but there was no guarantee that it would work or that I would make it back on the list. Then there was a miracle.
The night before they were going to take me off the list, I received the call for lungs. The results were immediate! When I woke up from the surgery I felt incredible and for the first time in my life I could breathe. It’s a sensation that words could never do justice in explaining. It took about two months of hard physical therapy to learn to walk and build up enough muscle tone for my doctors to clear me to go home.
Life post-transplant was great! I was able to return to work after a couple months. I even joined the board of a local non-profit for Cystic Fibrosis something I dreamed of doing for years. Unfortunately my time for easy breathing wouldn’t last. At around 16 months post-transplant I went into Antibody Mediated Rejection, my body was trying to evict the donor lungs. It took a couple weeks of antibiotics and blood filtering but we were able to get the rejection under control. Sadly the damage was done and my new lungs were damaged beyond the point of repair. My lung function went from 93% down to 26%. The only solution now seemed to be a second double lung transplant. After talking with my transplant team and even beginning the tests for evaluation it was determined that I would still be a good candidate for transplant. The best news I’d heard in a long time, my mom and I were both teary eyed as the doctor was telling us the next steps and what needed to be done before they would be able to put me on the list. The good news didn’t last long.
My blood work results came in and my creatinine levels were three times higher than they should have been and my kidney’s were going into failure. Doctors spent the next week trying to determine what caused my kidney numbers to spike, but as doctor after doctor ran their tests and came up empty it was pretty clear that no one had any answers. After weeks of testing and no answers the doctor said that not only was second transplant no longer an option, but with how things looked I should consider creating a bucket list and start seeing my loved ones. The reality is I am out of treatment options and the problems I’m facing are only going to get worse.
I hesitated on putting together a list, honestly the seriousness of the whole thing gave me anxiety. I’m not ready to plan my last days, but then again will I ever be? So here we are! My bucket list:
20. Eat a NYC Bagel
19. See Star Wars Rise of Skywalker
18. Eat at the Canadian Swiss Chalet
17. See a whale
16. Cover the house in lights for Christmas
15. Dine at the Sterling Buffet for the Lobster Brunch in Las Vegas
14. Go to the Detroit Zoo and see the Zoo lights
13. See the Christmas Story House
12. Visit the Parthenon in Tennessee
11. Dine at Peter Lugers
10. Have Fried Green Tomatoes at the Whistle Stop Café
9. See the Rockefeller Christmas Tree
8. See a show on Broadway
7. Eat a low country boil
6. Take a good family picture
5. See the new Star Wars land
4. Get my hair and nails professionally done and dress up for a fancy dinner at Victoria and Alberts
3. Give Alton Brown a hug (or a chill high five if he’s not into hugs)
2. Dine at Alinea in Chicago
1. Spend one night in a Bungalow at the Polynesian Resort with my family and friends having room service from Ohana’s and watching the Magic Kingdom fireworks from the balcony.
If you notice one thing about my list, it’s probably that it revolves around food. Cooking and eating are my big passions in life! My grandma had me cooking with her before I can even remember, she taught me that you can always show someone you love them with a good meal.
While everything on this list is important to me there are other expenses that these funds will be used for that are mandatory. I will require more oxygen than insurance is willing to pay for, though we’re going to work with the doctors and oxygen company to find the best and most reasonable. I can’t fly in an airplane so a portion will go towards renting alternative transportation. Meals while traveling and other traveling expenses.
What do you get as a donor?
I plan on filming and photographing as much of every list item as possible, which I will be posting and sharing here and on my Blog: facebook.com/ASpoonieFullofSugar
What will happen to the funds should something happen to me?
Funds will go to help my family with end of life expenses and anything left over will be donated to a local non-profit that supports people with Cystic Fibrosis.
When I was 6 months old I was diagnosed with Cystic Fibrosis a genetic disorder that causes the lungs and pancreas to be plugged with extra thick and sticky mucus. All that mucus makes it easy for infections to thrive and grow, so it's no surprise that i've spent most of my life doing treatments or in the hospital on antibiotics.
I was really lucky throughout my life, even though I was sick about every 3 months and required 2-3 weeks of antibiotics I still managed to live a life I am not only proud of, but with little to no regrets. My health was stable and followed a consistent pattern that let me finish college and even travel the world.
That was until August of 2016. I woke up one night and I couldn't breathe, my oxygen levels were reading in the mid to low 70%, so my dad carried me out to the car and my mom rushed down to the University of Michigan. It was less than a week later we learned that I had gone into end stage lung failure and a double lung transplant was my only option if I wanted to survive. I signed the paperwork to start the transplant process as soon as the doctor said he thought I'd make a great transplant candidate. The process didn’t go very smoothly for me, I ended up on life support and in a coma for about three weeks. The doctors were going to take me off the list to try and give my body some time to recover but there was no guarantee that it would work or that I would make it back on the list. Then there was a miracle.
The night before they were going to take me off the list, I received the call for lungs. The results were immediate! When I woke up from the surgery I felt incredible and for the first time in my life I could breathe. It’s a sensation that words could never do justice in explaining. It took about two months of hard physical therapy to learn to walk and build up enough muscle tone for my doctors to clear me to go home.
Life post-transplant was great! I was able to return to work after a couple months. I even joined the board of a local non-profit for Cystic Fibrosis something I dreamed of doing for years. Unfortunately my time for easy breathing wouldn’t last. At around 16 months post-transplant I went into Antibody Mediated Rejection, my body was trying to evict the donor lungs. It took a couple weeks of antibiotics and blood filtering but we were able to get the rejection under control. Sadly the damage was done and my new lungs were damaged beyond the point of repair. My lung function went from 93% down to 26%. The only solution now seemed to be a second double lung transplant. After talking with my transplant team and even beginning the tests for evaluation it was determined that I would still be a good candidate for transplant. The best news I’d heard in a long time, my mom and I were both teary eyed as the doctor was telling us the next steps and what needed to be done before they would be able to put me on the list. The good news didn’t last long.
My blood work results came in and my creatinine levels were three times higher than they should have been and my kidney’s were going into failure. Doctors spent the next week trying to determine what caused my kidney numbers to spike, but as doctor after doctor ran their tests and came up empty it was pretty clear that no one had any answers. After weeks of testing and no answers the doctor said that not only was second transplant no longer an option, but with how things looked I should consider creating a bucket list and start seeing my loved ones. The reality is I am out of treatment options and the problems I’m facing are only going to get worse.
I hesitated on putting together a list, honestly the seriousness of the whole thing gave me anxiety. I’m not ready to plan my last days, but then again will I ever be? So here we are! My bucket list:
20. Eat a NYC Bagel
19. See Star Wars Rise of Skywalker
18. Eat at the Canadian Swiss Chalet
17. See a whale
16. Cover the house in lights for Christmas
15. Dine at the Sterling Buffet for the Lobster Brunch in Las Vegas
14. Go to the Detroit Zoo and see the Zoo lights
13. See the Christmas Story House
12. Visit the Parthenon in Tennessee
11. Dine at Peter Lugers
10. Have Fried Green Tomatoes at the Whistle Stop Café
9. See the Rockefeller Christmas Tree
8. See a show on Broadway
7. Eat a low country boil
6. Take a good family picture
5. See the new Star Wars land
4. Get my hair and nails professionally done and dress up for a fancy dinner at Victoria and Alberts
3. Give Alton Brown a hug (or a chill high five if he’s not into hugs)
2. Dine at Alinea in Chicago
1. Spend one night in a Bungalow at the Polynesian Resort with my family and friends having room service from Ohana’s and watching the Magic Kingdom fireworks from the balcony.
If you notice one thing about my list, it’s probably that it revolves around food. Cooking and eating are my big passions in life! My grandma had me cooking with her before I can even remember, she taught me that you can always show someone you love them with a good meal.
While everything on this list is important to me there are other expenses that these funds will be used for that are mandatory. I will require more oxygen than insurance is willing to pay for, though we’re going to work with the doctors and oxygen company to find the best and most reasonable. I can’t fly in an airplane so a portion will go towards renting alternative transportation. Meals while traveling and other traveling expenses.
What do you get as a donor?
I plan on filming and photographing as much of every list item as possible, which I will be posting and sharing here and on my Blog: facebook.com/ASpoonieFullofSugar
What will happen to the funds should something happen to me?
Funds will go to help my family with end of life expenses and anything left over will be donated to a local non-profit that supports people with Cystic Fibrosis.
Organizer and beneficiary
Marissa Parks
Organizer
Linden, MI
Clayton Parks
Beneficiary
