COVID Stole My Transplanted Kidney!
Use the QR code to take a short survey to see if you might be a match. Or visit: https://cumc.co1.qualtrics.com/jfe/form/SV_elmzsRwN2xVW1db?_gl=1*xom4nu*_ga*Mjc5MzI3NzY0LjE2NTIzNzk5ODY.*_ga_K6Q485ZK4D*MTY1MjM3OTk4Ni4xLjAuMTY1MjM3OTk4Ni4w&_ga=2.176802597.1881091672.1652379987-279327764.1652379986&fbclid=IwAR0tMmpWQyLVgQv3rTHMcFJKVr3IG007zUrOnV5il09K0OtOy0hGEuwDmbY you will need Full Nicole Lyons and Birthdate 2/20/1993
Watch Nikki's Congressional Testimony on her health journey https://youtu.be/00wJlQM1JBw
Short version of Nikki's story - still a draft version, some from Nikki and some from Mom. We will fix as soon as we slow down on getting the word out!
During my senior year of college, I was diagnosed with kidney failure. I had to leave school and postpone my medical/graduate school dreams. All I wanted to do was start my career treating and researching cures for pediatric brain cancer.
I was fortunate to find a fabulous woman who was a match. To say she is near and dear to my heart is an understatement! In 2016 I had a transplant, and all was well.
I returned to school. I was accepted to Columbia University and was about to complete my degree (again) and apply to MD/Ph.D. programs.
While in Columbia, I faced many issues with a lack of support for transplant-related issues (including skin cancer) and how it impacted school. My disability accommodations were not respected. This lead to me spearheading advocacy for students with disability and consulting with student health. I did not want others to have a similar experience.
I continued to study neuroscience and molecular biology while working with research labs focusing on cancer or neuroscience or both. I also worked with the Swifty Foundation, building post-mortem brain tissue donation awareness.
I got covid because I was forced to attend class during a pandemic which eventually led to transplant rejection and failure.
My school is not accommodating the final courses that I couldn’t take the final in because I was hospitalized and in kidney and heart failure. This has happened repeatedly throughout my time at Columbia and caused more than $50,000 in additional tuition charges to retake classes that should not have had to be repeated.
After being forced to attend classes during the pandemic (while I was immune compromised), I contracted COVID, causing my kidney to become damaged.
The transplant failed, and she must be on dialysis until a new kidney is found. The waiting list is five years.
Kidney failure led to heart failure (which was negatively impacted by dialysis, and Nikki had to continue dialysis treatment rather than heart treatment due to insurance and physician negligence.
It took three ER visits to get Heart Failure diagnosed, which was costly and traumatic
She receives expensive treatment for PTSD
Nikki currently has $700k in medical bills that insurance isn’t covering/ making it impossible to get student loans, get an apartment etc.
The main concern of the transplant team is financial ability. To get a new kidney- I need to show resources to pay for life-saving treatment. This seems wrong!
Nikki falls in the gap. She is too old for many of the programs for kids/young adults, but because she had delays in education due to kidney disease, she has never been able to graduate to the adult world and show financial stability. She no longer qualifies for insurance through her parents.
Nikki testified to congress about the impact of lack of effective health care on her life: https://www.youtube.com/watch?v=00wJlQM1JBw
See if you are a kidney match: https://cumc.co1.qualtrics.com/jfe/form/SV_elmzsRwN2xVW1db?_gl=1*xom4nu*_ga*Mjc5MzI3NzY0LjE2NTIzNzk5ODY.*_ga_K6Q485ZK4D*MTY1MjM3OTk4Ni4xLjAuMTY1MjM3OTk4Ni4w&_ga=2.176802597.1881091672.1652379987-279327764.1652379986&fbclid=IwAR0tMmpWQyLVgQv3rTHMcFJKVr3IG007zUrOnV5il09K0OtOy0hGEuwDmbY