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2/10/2017 Latest post:
Welcome to my CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. My name is Kelly and I'm 49 years old living in the Columbus, OH area. My husband Steven and I have 6 children and two dogs.
I was diagnosed with a genetic kidney disease called ADPKD Autosomal dominant polycystic kidney disease back in 2001, but probably much sooner, truth be told. My dad, an only child, had the disease and had a cadaver transplant at newly formed (at the time) transplant clinic at The Ohio State University Medical Center in Columbus Ohio. He was the same age as I am now, 49. However, he had been on hemodyalisis for several years prior to the transplant, so his body was already weak when we finally got to the call that there was a kidney for him.
I was a teenager at the time, very wrapped up in my senior year activities and planning for college, so I don't remember very much about when he had the transplant. He also was very private about it and sort of kept things hidden from us (his children). But I remember him being in bed a lot and living with his mom (my grandma) because she had air conditioning and no stairs. Plus, she was a doting mother who was going to look after her boy, her only child. In the 10 years that followed, he suffered with chronic rejection, some type of fungal infection unique to transplant patients, required and had a double hip replacement and was pretty miserable the entire time until his death on July 3, 1993. Almost exactly a month before I would give birth to his first grandson.
As you can imagine, when I found out that I had the disease, I remembered his experience and was pretty upset. I was young when I was diagnosed at 34. Though I remember many years as a child being doubled over in pain with what felt like a "stitch" in my side, having urine the color of cola, running fevers and having some weird tests, no-one ever told me that my dad's disease was genetic. In fact, there were 4 girls in the family, me, my older sister and my two younger sisters. My dad, trying to protect his little girls, told us that what he had could only be passed down to boys. And that worked - until my baby brother was born.
I lived for many years after my diagnosis like nothing was different. I was always slender, active, have never smoked, rarely drank, have never used street drugs and don't drink coffee, I thought it was something I'd have to deal with "sometime when I'm old" (whenever that would be). And this was fine through 4 healthy pregnancies, 2 adoptions, and my busy life. Everything came to a halt in May 2007 when I was home with my then 6 yr old son and suddenly felt like I needed to lie down immediately. I felt weak, feverish. I was so weak I asked my son to call daddy and ask him to come home immediately, mama is sick. It turned into a week stay in the hospital with pyleonephritis being pumped full of morphine and antibiotics. Once that happened, it was like the sleeping giant of PKD had been awoken and it was not pleased.
After many, many hospitalizations, MRI's, CT scans, pyelograms, ultrasounds, sclerotherapy, antibiotic allergic anaphylaxis events, pain medications - a wholly negative and discouraging experience, I've finally reached the "sometime when I'm old" and it's time for transplant. Apparently "old", in my case, is 49. I have a lot of trying times ahead of me: surgeries, awkward discussions where I ask people to consider being my organ donor, rejections, the seemingly never-ending blanket of pain that I seem to be wrapped so tightly in, treatments, appointments, possibly dialysis and all that comes with it. Without my faith in my Lord Jesus Christ, and my incredible supportive and loving husband, I don't know how, or if, I could face this. St. Jude, pray for me.
The plan is a preemptive live donor transplant. This would mean that if I find a match fast enough, I could avoid dialysis. So I will have my tested (I'm O+, btw) for antibodies and other medical stuff, I will then be assigned a transplant coordinator who can help connect potential donors with me and, God willing, a match will be found and two lives will be changed forever in the most amazing way.
I plan to journal my way through this series of life changing events where I hopefully go from being a person with a ticking bomb strapped to my back to a person with a brand-new (to me) kidney who's life is just beginning - again.