Kidney kibitzing

When I was thirty-two years old, the doctor diagnosed me with polycystic kidney disease (PKD). I had three daughters; an eight year old, a seven year old, and a one year old. My husband was a hardy and healthy line backer looking kind of guy. I was a busy mom dealing with intermittent pain. It was the pain and a host of other maladies plaguing me that prompted my making an appointment with a physician.

Thirty-six years ago, after my exam, and after reviewing my records, my doctor came back into the room. His perfectly pressed lab coat added to his professional demeanor. I was stunned by the declaration he delivered. He said that my kidneys wouldn’t fail until I was in my sixth or seventh decade of life. As a young mother, even my fifth decade sounded eons away let alone turning 60 or 70 years of age. “That’s really old”, I thought. Besides, who thinks about organ failure when you are in the prime of your life?

At least, I learned that my genetic, hereditary and potentially debilitating disease with no cure was a slow progressing disease. I was told that it could eventually lead to kidney failure. Dealing with failing kidneys seemed far into the future.
It seems my original diagnosis was right on the mark. That “distant future” has arrived and my kidney transplant date has been set. Whether I’m ready for this new adventure (and you know how I love adventure) or not my life is going to change. I will be the recipient of a pre-emptive living donor kidney transplant (bypassing dialysis) at New York Presbyterian Hospital August 14.

Knowing that my name is now on the surgery schedule changes everything. Before Brian (my kidney transplant coordinator), called to give me the date, I was somewhat removed from my own reality. It was as if I were in the audience and watching someone else go through all the steps leading to transplant; finding a transplant center, learning of my candidacy, the day long evaluation with a dozen vials of blood drawn followed by doctors appointments. Then came abdominal scans, EKG’s, consultations, a mammogram, a bone density scan, colonoscopy, dental clearance, and a PPD, (Mantoux Tuberculin Skin Test), all of which are part of the weeks long transplant evaluation process.

Two years ago I was placed on the United Network for Organ Sharing transplant list. One year later, I was blessed with a match. An amazing woman from my church heard about my story and felt led by God to find out if she was a match. She was. And now, ten months later, we will each lay on a gurney in hospital rooms next to each other where she will donate a kidney thus giving me the Gift of Life. I stand amazed!

I have lived for over half my life knowing that one day my kidneys might fail. That day has come yet this entire process has been a journey of growth and discovery. At times I’ve cried out to God, “Why did I have to be born with PKD? Why couldn’t I just be normal?” I’ve wished for a healthy body to do all the things I’m passionate about. I’ve wished to be pain free. I’ve wished I didn’t have to deal with limitations and could be free from struggling up the subway stairs in New York City. I’ve wished not to have the body distortion of a swollen abdomen from kidneys that can grow to the size of footballs. I’ve wished not to suffer emotionally and physically from dealing with chronic disease that causes my family worry. I’ve wished to not have to explain to a potential suitor that I have a life threatening illness and does he really want to get involved?

But, my greatest life-long wish has always been to be a blessing to others. That through my setbacks and weakness, even in my illness, that God would make me strong and brave. That He would build my character and make me a beacon of hope for others facing chronic disease, or just plain life. If I could be an instrument in helping another believe that life is really worth living, I’d be tickled pink!

Thanks for reading my blog. I hope that you will revisit it during these next few weeks and follow my kidney transplant journey. Please feel free to share my link. You may check my Facebook homepage for updates. Family and friends will mostly do the posting at least in the beginning.