AAKP Ambassador Ashley Martin: My Story So Far (posted Sept. 14, 2018)

Written by AAKP Ambassador, Ashley Martin

 

If you would’ve told me three years ago that I would be speaking at the 2018 AAKP National Patient Meeting, I wouldn’t have believed you. If you told me eight years ago that I would be the first 18 year old trained care partner for home hemodialysis, I definitely wouldn’t have believed you. If you also told me I would be a field advocate, speaker, and government liaison for chronic kidney disease, I would have thought you were crazy!

I grew up in the suburbs of Cincinnati, Ohio. Born to a firefighter and medical assistant, we lived a very humble life. I was always fascinated with medicine and how things worked. At age three, my mom left my dad due to domestic violence. During this same time my grandmother was dying of bladder cancer. Not only was my mom working three jobs to provide for me and cover the large amount of debt incurred by my father; she was also taking care of my dying grandmother. All the while, she was suffering from a chronic illness - kidney disease. My mother was diagnosed with chronic kidney disease at the age of 18. She had reflux nephropathy that was never caught in childhood. Resulting in chronic renal failure years later. How we got through such a difficult season amazes me, especially the strength and faith my mom had on a daily basis.

After my grandma passed away we moved to Mason, Ohio, a suburb of Cincinnati in hopes of a new start. The friends we made there were such a blessing. Unfortunately, around that same time my mom’s kidney disease was also progressing. It wasn’t too long before she started peritoneal dialysis, which is a type of dialysis that can be done at home and without a care partner. Eventually, she was forced to switch to hemodialysis due to ovarian cysts that were thought to be peritonitis.

Worried about her worsening condition, my mom saw a flyer in the corner of the lobby of her dialysis unit for the AAKP National Patient Meeting. She felt that the best way to prepare herself for the road ahead was to educate us both.

In 2005, we went to our first AAKP meeting. We made it our family vacation. My mom encouraged me to learn and go to sessions if I felt interested, but she was also prepared if I chose to not attend the sessions. We would still go out and do other things outside the meeting that normal families would do on vacation.

To her surprise, I loved going to the sessions, meeting other patients and family members and learning from the speakers. While sometimes it would take me a little longer to understand, since I was so young, I was eager to go to session after session. I couldn’t learn enough! We kept going back year after year. I was seven years old at my first conference, and I remember thinking that I would love to speak and lead a session one day. The staff at AAKP had become like family to us in such a difficult time.

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Ashley Martin presenting at the 2018 National Patient Meeting (top photo).  Ashley with her mother at the 2018 National Patient Meeting (middle photo).  Ashley attending the Meeting as a child in 2005 (bottom photo).

A few years later, in 2006, we were blessed with a kidney transplant from a deceased donor. I was in 4th grade at the time. What this man did for me and my mom, words cannot express! I very much feel if it wasn’t for him that my childhood would have looked very different. Because of the decision he made to be an organ donor, I was able to enjoy a good part of my childhood like normal kids. No more staying with friends every time my mom was in the hospital. I could finally just enjoy being a kid with my mom. This amazing gift he gave us lasted five years. Unfortunately, there were lots of rejection episodes that occurred due to CMV infection (cytomegalovirus).

In 2010, the transplant was taken out due to fracture. When a transplant fracture’s it becomes like ground beef and can get infected if not removed. The fracture was due to scare tissue resulting from numerous rejection episodes. My mom went back to in-center hemodialysis. Heart broken and in high school, I finally felt I was old enough to take on some responsibility. I put my mom’s name on a waiting list for home hemodialysis.

It wasn’t until four years later that we saw any change. I turned 18 years old, and I was running out of time before heading off to college. I was motivated to do anything to give my mom a better life. I volunteered to be her living donor. Growing up I was always told when you’re 18 years old, you can donate. But that wasn’t necessarily true. After all the tests were completed, we found out I was a perfect match. However the transplant team felt I was too young to donate. I felt hopeless, I could tell in-center was taking a toll on my mom’s health, and I couldn’t stand to watch her suffer any longer. I spoke privately with her nephrologist, expressed my frustrations and begged for the opportunity to do home hemodialysis. He was nervous that I was only 18 years old. No one at the time had been trained so young. However, he agreed.

We started home hemodialysis training the summer of 2014. The staff was very nervous because of my age, but eager at the chance. While I picked everything up very fast, we were required to do longer training so the home dialysis training staff felt more comfortable that I could be my mom’s care partner. Were we also the first mother daughter team! Before then it had only been husband and wife teams.

That year I started my freshman year of college and my mom did a lot better with home hemodialysis. She also was finally able to have the freedom to travel and live a somewhat normal life. That very year, the FDA had heard about us breaking the mold and reached out with an invitation to the first Kidney Health Initiative meeting. We were so elated. We never would have expected God would use our hurt and heartbreak to help so many people. From then on, we continued to get offers from different organizations and the government to share our story, experiences and patient/care partner perspective.

In April of 2018, my mom received another kidney transplant. Like the last transplant, the kidney was from a deceased donor, but the kidney was not originally scheduled for her. After my mom’s surgery, the transplant surgeon shared that the person who was originally supposed to receive this kidney was either too sick for the procedure or had turned it down (he was unable to specifically say due to HIPAA). We were stunned. We definitely were not expecting this. After waiting so long, we had even stopped packing a hospital bag because we had lost so much hope.

Following my mom’s second transplant surgery, I was set to speak at two different sessions at AAKP’s 2018 National Patient Meeting. It seemed that life was taking a turn for the better.

I can’t even begin to express how blessed I feel to be achieving my dream at such a young age. I have such a heart for kidney disease and the patients out there; and I want them to never lose hope and to learn as much as they can about their condition and treatment options.

I’m in college right now to be a Pediatric Transplant Surgeon. I am also an AAKP Ambassador. Additionally, I am looking forward to all the amazing projects I have coming up. And, I’m so proud to call the AAKP staff my family! So, this my story…so far…