Kidney For Mike Hiles

 

 

Kidneys are necessary to humans to survive. Most of us are aware of this but don’t think about it everyday. Neither did Mike Hiles and his wife Susan until May 2020. Mike's story started in May 2020 when he received tests for a normal yearly exam. It showed high levels of protein in his urine. He was then referred to an urologist who arranged a kidney biopsy, which led to a diagnosis of AL Amyloidosis. Al Amyloidosis is a very rare disease that is listed in NORD (national organization for rare disorders) as only 4000 new cases per year. This disease is from abnormal blood cells (Lambda light chains) from the bone marrow “misfolding" which then build up in the body’s organs. Most commonly in the kidneys, which is the case with Mike. There is a link at the bottom of this letter for more information on AL Amyloidosis.

 

We live in a charming small town area full of wonderful people. Our medical professionals are very caring. However, the healthcare that Mike needed was not available here. So he has to travel to Ohio State University Wexner Medical Center, Columbus, Ohio to be treated.

There is no “standard treatment" for AL Amyloidosis but chemotherapy is the acceptable practice. So Mike started these treatments in June 2020 in Columbus, Ohio.

In December 2020 the chemo treatments quit working. His doctor was able to get approval for treatment with a medication that was new for use in treatment for AL Amyloidosis. The results were amazing! His "light chain" numbers dropped significantly. So his doctors prepared him for stem cell transplant.

 

On May 21, 2021 Mike was admitted in the transplant isolation ward at OSU Wexner Medical Center for his stem cell transplant. Unfortunately, he ended up with "engraftment syndrome" which included infection, high fevers, rash, edema and renal insufficiency. He was inpatient at the OSU Wexner Medical Center from May 21st to June 18th, 2021.

 

The worse happened: he lost full kidney function.

He was now an End Stage Renal patient.

He began dialysis while still in the hospital.

He will be on dialysis until he receives a donated kidney.

 

More than anything Mike must get a kidney transplant. His disease will never be cured but the transplant could extend his life significantly and allow him to live without being attached to a dialysis machine.

 

Mike and his wife Susan have struggled with this illness physically, mentally, and financially. They have continuously had to travel to Columbus and will need to travel even more in the future. They cannot continue to meet expenses for medical needs, prescriptions, travel expenses including gas and maintenance on vehicles, hotel stays, food, medical equipment, and more –

Not to forget care for Zeke, our Standard Schnauzer, who is terribly rotten but loved : )

 

Donations are needed and will be appreciated!

 

Your thoughts will also be appreciated!

 

Pass the word around, put it on your facebook, and mention it at work, church, and family gatherings. Many miracles have happened due to transplant donors and we are hoping it will continue to increase as time goes on. Not just for Mike but also for all those who need their lives saved.

 

 

PLEASE read about information for living donors at the link at the bottom of this letter. Please check into this information even if you think you can’t donate

 

There is also a link for those who wish to find out more about this rare disease AL Amyloidosis .


   

 

amyloidosis.org