Help Ellis Perez Breathe Easy
Donation protected
Hey folks!
My name is Ellis and I have Cystic Fibrosis.
CF is a genetic disease that essentially causes my body to create too much mucus in the lining of my lungs and digestive tract. This leads to problems with malnutrition, chronic infections, and progressive lung damage. (Read more about the disease here )
In the last year I have been hospitalized 6 times due to infections, most hospital stays lasting 2-4 weeks followed by 2-4 more weeks of IV therapy after discharge. I have become intermittently oxygen dependent and lost a lot of weight due to how harsh my medications are on my stomach. I have several chronic bacterial and fungal infections in my lungs that are hard to treat due to either antibiotic resistance or my allergies to drugs that treat these infections.
Basically I am reaching a point where without a lung transplant I cannot expect to make strides toward having a quality of life I want. Through discussions with my doctor I can expect my current lungs to last me another year or two at best. While I am not actively on the transplant list I expect that will happen sometime in the next year.
While I am lucky enough that my insurance will cover the cost of transplant, I hit another snag when planning for this surgery. Because of a certain bacteria in my lungs (burkholderia cepacia) my clinic will not be able to perform the transplant at their facility. In order to receive a transplant I will have to relocate from Minneapolis, MN to Durham, NC 1,100 miles away, to be treated at Duke University.
I am hoping to raise funds in order to pay for a few things:
-Travel costs to go down for my evaluation in September/October.
-Travel/moving costs for me to relocate in NC.
-Hotel and travel for my mother to be able to be with me during surgery/recovery.
-Food and transportation for doctor's appointments and while I am in the hospital.
-A financial buffer for my mother to be able to take time off of work to aide in my recovery.
My family and I are both saving to make this transition as smooth as possible and to help ensure none of us have to worry about financial stress while dealing with this already emotionally draining ordeal.
I will be posting updates about clinic visits and life in general as I go through this process. If you aren't able to donate, social media is a powerful tool so sharing this would mean the world to me!
If you have more questions, want to point me in the direction of resources I may have over looked, or just want to send a kind word please feel free to reach out to me via email @ [email redacted]
My name is Ellis and I have Cystic Fibrosis.
CF is a genetic disease that essentially causes my body to create too much mucus in the lining of my lungs and digestive tract. This leads to problems with malnutrition, chronic infections, and progressive lung damage. (Read more about the disease here )
In the last year I have been hospitalized 6 times due to infections, most hospital stays lasting 2-4 weeks followed by 2-4 more weeks of IV therapy after discharge. I have become intermittently oxygen dependent and lost a lot of weight due to how harsh my medications are on my stomach. I have several chronic bacterial and fungal infections in my lungs that are hard to treat due to either antibiotic resistance or my allergies to drugs that treat these infections.
Basically I am reaching a point where without a lung transplant I cannot expect to make strides toward having a quality of life I want. Through discussions with my doctor I can expect my current lungs to last me another year or two at best. While I am not actively on the transplant list I expect that will happen sometime in the next year.
While I am lucky enough that my insurance will cover the cost of transplant, I hit another snag when planning for this surgery. Because of a certain bacteria in my lungs (burkholderia cepacia) my clinic will not be able to perform the transplant at their facility. In order to receive a transplant I will have to relocate from Minneapolis, MN to Durham, NC 1,100 miles away, to be treated at Duke University.
I am hoping to raise funds in order to pay for a few things:
-Travel costs to go down for my evaluation in September/October.
-Travel/moving costs for me to relocate in NC.
-Hotel and travel for my mother to be able to be with me during surgery/recovery.
-Food and transportation for doctor's appointments and while I am in the hospital.
-A financial buffer for my mother to be able to take time off of work to aide in my recovery.
My family and I are both saving to make this transition as smooth as possible and to help ensure none of us have to worry about financial stress while dealing with this already emotionally draining ordeal.
I will be posting updates about clinic visits and life in general as I go through this process. If you aren't able to donate, social media is a powerful tool so sharing this would mean the world to me!
If you have more questions, want to point me in the direction of resources I may have over looked, or just want to send a kind word please feel free to reach out to me via email @ [email redacted]
Organizer
Ellis Pérez
Organizer
Minneapolis, MN
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