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Alexa’s battle with aHUS!

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My name is Alexa Griffin, I am 23 years old and live in Montana. I battle a very rare genetic disease called A Typical Hemolytic Uremic Syndrome. (aHUS) only affects 2 in a million people in the US…I’ve been unemployed and on dialysis for the last year waiting for a kidney transplant. On October 27th, 2022 I received a phone call from my transplant team, telling me to get to Spokane asap for cross matching lab work to find out if this deceased donor kidney was a match with me or not. I packed whatever I could and drove straight to Sacred Heart in WA. Around 10 pm that night, I was approved for the kidney transplant. I was then at the hospital at 8am the next morning for a major life changing surgery. What I didn’t know then, was how difficult this journey would be. A month after my transplant, I had a biopsy done on my new kidney because my lab work wasn’t looking as well as they had hoped. The biopsy results came back poorly. My transplant team had to send all my results to the Mayo Clinic for further research. They later confirmed that I had rejection and the aHUS had attacked my new kidney. I did harsh treatments for two different kinds of rejection which included getting a hemodialysis catheter in my chest and doing plasmapheresis. I had a second biopsy done in February which showed no sign of rejection. But also showed irreversible damage caused by the aHUS/TMA. My graft function of all three kidneys together is about 20% which close to dialysis. I’ll need all the support I can get to go to the Mayo Clinic in MN for further testing and evaluation for a new transplant. Until then I am preparing for at home peritoneal dialysis again and staying home away from any risk of getting sick as I’m extremely immunocompromised.I’m now in the process of getting a remote job through the vocational rehabilitation center so I can try and save money for Mayo Clinic. I’m currently struggling to pay for basic things like paying rent and getting gas for doctors appointments. My family have been so supportive in this entire process but things are tight right now. I appreciate each and every one of you for all the love and support through this lifelong journey of fighting a-typical HUS. Thank you!! much love & stay healthy!

Organizer

Alexa Griffin
Organizer
Missoula, MT

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