My Journey with ESRD

Once upon a time in a land far, far away there lived a boy named Shane that was diagnosed with ESRD. Whats ESRD you say, End Stage Renal Disease. That was my questions also, what do I do with this new found knowledge? Well as it was 1998 when I was told this lovely phrase, recently married in 1995 and a newborn daughter living at home with another child on the way. We start seeing kidney doctors, Nephrologist,  in the county we live in, after about the tenth doctor we find one we actually liked to start figuring things out. So, I do some blood test and we get the results, creatine 1.7. We do all the nieve math calculations, I will be 65 before I need a transplant, the kids will be grown and out of the house, this isn't a problem. Then in 2000, while out of town it happened, kidney failure. I returned to Tampa and was admitted to the hospital to start dialysis. After only ten months on dialysis, my half-sister made the courageous decision to donate a kidney to me. My life significantly changed, I was able to travel, raise my daughter and son, and go back to school. Two years after transplant I had a kidney biopsy and was diagnosed again with my disease which has infected my transplanted kidney and so the internal clock began counting down towards dialysis again. My disease, IgA Nephropathy is basically when the antibody IgA, which is suppose to help fight infections,  binds together to form long chains and lodge themselves within a specific part of the kidney, slowly stopping kidney function over time however different people with IgA nephropathy experience different rates of kidney failure. No one knows the specific causes of IgA Nephropathy scientists only recently began to suspect that it could be due to genetics, only no one in my family had a kidney disease that I personally knew,  Skip ahead fifteen years 2 months and a handful of days and I was again out of town and get the call from the doctors, Mr. Shane, please check yourself into the hospital. I returned to Tampa and went to the hospital and started dialysis again due to ESRD. It has currently been two years this November on dialysis and I am reaching out for help. Every other day is a struggle. Its a fight between being sick and tired and needing to work full-time to support a family.  There are days when I am at work and my fellow colleagues know when its a bad day for me, they read it in my face. I truly try and hide the ugly side of ESRD and not let the sickness control me but everyone has their point and I think I have reached mine.  So here is some simple math that I think we can all follow, 4 hours a day, 3 times a week, 52 weeks in a year equals 624 hours stuck in a chair not being able to move. Three days a week means, not being home for dinners with a family you love but being in a clinic doing a life-saving treatment so you can have dinner the other four days in the week. 624 hours is also the time in the chair, that's not counting the times you bleed after treatment and need to stay longer. That figure also doesn't reflect the time waiting for the previous patient who had an issue cause the clinics are run lean. Or the times when we just get the needle sticks wrong and the techs infiltrate your access and your arm looks like you have a tangerine under your skin along with the bruise that is slowly forming. According to UNOS, "even as records are broken, 13 people living with kidney failure die every day waiting for a kidney. Today, there are almost half a million dialysis patients in the United States, and nearly 96,000 of them are on the waiting list for a kidney and 1,690 are waiting for a kidney and pancreas".  The money donated will go to paying deductibles for insurance, doctors bills, and student loans.  I appreciate all who took the time to go on this journey with me and I thank you truly from the bottom of my heart for any help provided.

11/06/18 Updates

The support that I have received today was unbelievable !! To witness how much support I have on a journey that I thought I was alone in, I just don't have the words. Thank you to everyone that has taken the time to read my story and help in the way they can. I have some living donor information Id like to share with anyone who would like to consider a donation. 

Thank you for your interest in kidney donation. By clicking on the link below, this will direct you to our medical intake form. Once you have answered the questions, check the “I Agree” box and the intake will be sent to a living donor coordinator. After review of the intake, a living donor coordinator will contact you.

https://tghsecureforms.org/living-kidney-donor-form/

TGH asked me to have only the B and O blood types fill out this form as they cannot process every blood type to help me.