After being placed on the waitlist, receiving the call for a kidney transplant is a happy occasion for many PKD patients. The chance that PKD, with its genetic nature, might not end with a transplant can lead a family down the path all over again. Join guest blogger Rob Herman as he continues to share his and his family’s story about how PKD has impacted their lives:
Once a person gets on the transplant list, there is a high level of excitement, nervousness, and anticipation as you wait for “The Call.” I have three questions for any transplant recipients:
- How many times did you receive “The Call” before your transplant?
- What time of day was the call(s)?
- If you received multiple calls, why?
I ask because I received two calls before my kidney transplant. The first came at 4:45 a.m. Heartbreakingly, I had to turn it down because I had the flu. Yep, years on the transplant list and when “The Call” finally comes in, I have the flu! My second call came about eight weeks later at 11:30 p.m. The donor had had tuberculosis in the last ten years, and due to my compromised health, my doctors and I thought the risk wasn’t worth it. (At that point I was thinking they only call in the middle of the night!) My third and final call was a voicemail, which I still have saved today, that came at 10:30 a.m.
Through everything I had to go through, the worst part of my kidney transplant recovery wasn’t the surgery, but the pain from my migraines and heavily bruised fistula arm from dialysis. (I sure wish I knew if migraines were related to PKD.)
During the time of my dialysis and transplant, my 4-year-old daughter, Kaley, was experiencing some headaches. Over the next year, these seemed to become more regular. I silently prayed I had not passed on my debilitating migraines to our precious little girl. Linda and I never dreamed the headaches were due to polycystic kidney disease.
Kaley was five when we took her to her pediatrician, who ordered an ultrasound. We then got the call no parent wants to receive: “Please take your daughter to the E.R., where the neurosurgeon will meet you.”
What was causing her headaches? We were told Kaley had a large cyst attached to the base of her brain and she would need surgery.
No, I hadn’t passed on my migraines to our only biological child, but I was responsible for passing on my ADPKD.
For those of you who have experienced this, you know the guilt can, at times, be overwhelming. It tore me up inside, even more, when I had to literally hold her down while she screamed in pain as the nurses repeatedly attempted to insert an IV into her little arm.
Today, thank God, Kaley is a beautiful 13-year-old girl who is ready to take on the world, even with kidneys covered with cysts. She certainly does live by the Herman motto of: Never Give In! We pray you do as well.
Next time, our “Journey” really gets captivating.
If your child is suffering or has suffered, with PKD, please share your story in the comments below.