My Mom

Some have asked, and many have wondered if what I have is the same thing that affected my mother, and yes, it is. Autosomal Dominant Polycystic Kidney Disease (ADPKD) is an inherited disease, and the faulty gene has passed through her side of my family where it also affects two of my aunts and two of my cousins.

Both of my aunts, an older cousin and my mother lived into their 50s before their disease progressed into the stage where I am now. Both aunts and my cousin have had successful transplants and it is our hope and prayer that the younger cousin will not face any issues for several more years.

Kidney transplantation is a slightly misleading term, or at least was for me for quite some time. When someone says “kidney transplant” my mind creates the image of replacement, ie: the removal of one kidney and the placement of another. For most cases, however the native kidneys are left in place, and a third kidney is added, usually in the lower right hand sign of the abdomen, right at the waistline.

My mom’s situation was slightly unusual. The growth of cysts in her kidneys caused them to enlarge from about the size of your fist to about the size of a loaf of bread. She had no extra room in her abdomen for a third kidney, and made plans to have her native kidneys surgically removed in anticipation of a donor kidney to be placed a couple of months later following recovery from the nephrectomy, or kidney removal surgery. This nephrectomy was an elective surgery, and as you know, the surgical team had difficulty controlling her blood pressure following the procedure, and she died in the hospital following the operation.

I don’t know yet what kind of transplant candidate I will present to be. I don’t know if I have room for a third kidney, but if my daughter is any judge, I should be fine because of my “fat belly.” I go for evaluation this week, and an entire day’s worth of workups including bloodwork, CAT scans, EKG, EEG, stress test, and meetings with the surgeons, nurses, social workers, mental health workers, and financial counselors. I sure hope they schedule the mental health counselors early in the day, because after a full day at the hospital being poked and prodded, I’m not sure how sane I will be by late in the day!

A big week to be sure…. I thank you for your interest and your support.