A successful transplant story

FROM PKD Foundation:
Our former LA Chapter Coordinator, Clive Grawe, had a successful transplant and is now home! I've attached his story. ~ Dwight Odland

Dear Friends & Family:
I would like to extend my deepest gratitude and thanks to all our friends and family. I would
especially like to thank you for all the cards, emails, flowers, phone calls, and even a short sleeve
shirt for these 100 degree temperatures (individual thank you notes will come later)! From the
time I made it public that I had PKD and kidney failure to the day of transplant I have felt the
outpouring of support from so many of you (from support for the PKD Walk to just asking Gina or I
how I was feeling). Special thanks to Evelyn Cronin for helping Gina pack, Dick & Sandy for taking
us to the airport, and Lisa for taking such good care of our house and dogs.
This has been a life changing few weeks for me! I have tried to capture some of the highlights and
lowlights of my first Transplant week in the attached table and accompanying photos. The week in
the hospital was a tough battle, but finally I feel like I’ve won the war. Although the road ahead will
have its ups and downs (dealing with diabetes, stint removal this month, surgery to remove my
dialysis portal next month, and a biopsy in October), the future is so much brighter for me now!
My doctors and transplant coordinator told me that they had never seen a kidney function improve
so quickly from a sleepy state! As of today, August 14th, my creatinine is 1.43 (.7 – 1.4 considered
normal). I truly had a Benjamin Button’s moment when within a period of 1 week my kidney
function improved to levels it had been at 20 years ago! I’m sure it was all those prayers and well
wishes from all my friends and family that must have contributed to the miraculous recovery of my
new kidney. All my long walks at lunch downtown and the laps I swam in my pool probably also
enabled me to be in good shape entering the surgery.
I would just like to share with you my feelings of overwhelming gratitude for the “gift of life” I have
been given by someone at their time of greatest grief. Although many of you think I was waiting a
long time for this kidney, the truth is that my wait of 2 ½ years was much less than the average wait
of 7 to 8 years in Los Angeles. Although I had the knowledge and financial resources to take
advantage of this opportunity, I feel an obligation to help correct this inequity by sharing my
experience and encouraging others to sign up as donors. One donor can benefit up to 75 other
people with organ and tissue transplants. I ran into Vernon, the other guy that received the 2nd
kidney from my donor (unfortunately, as of last week his kidney was still in sleepy mode and his
creatinine was 9). I was looking at transplant/donor T‐shirts and ran across some very
inspirational sayings: “Don’t take your organs to Heaven….Heaven knows we need them on earth”
and another which said “I measure my life not only by the life I lived, but the life I give”.
For those of you who wrote on the card that you couldn’t wait to see the “new Clive”, I’m sure you
will see quite a difference! Already, I feel a lot more energy and with all these steroids I feel like I
could hit a home run out of Dodger Stadium (like Manny). I can’t wait to go skiing again and travel,
things I have put on hold while on dialysis. You will probably also notice a bigger smile on my face
and a glow of gratitude for the new life I have been given.
Finally, I would like to acknowledge my immediate family for their help and support. My wife, who
openly says she is not “Nurse Nancy”, has given me shots and changed my wound drain! Special
thanks also to my daughter, Larisa who came up to visit for a week prior to her PhD graduation
(fortunately, I was able to watch her graduation on the internet), and my son‐in‐law Derek who was
so helpful. My sister, Karen, whose own kidneys are failing, visited this week.
With deepest gratitude and thanks to all my friends and family, Clive

TRANSPLANT WEEK – HIGHLIGHTS, LOWLIGHTS, & FUNNY MOMENTS
DAY 1
FRIDAY
Jubilation Then Panic! – Day ‐1 is like Launch Day without the preparation, or like the
Amazing Race. So excited to get the call at 11 AM, but panicked when told I should get there by 3‐4
PM, if possible. Gina hastily packed, while Evelyn arrived to help calm her. Dick and Sandy picked
us up at 1:30 PM and we rushed to LAX & caught a 3:30 PM flight, arriving in Portland at 7:30 PM .
DAY O
SAT
No Turning Back, But A New Beginning! – Day 0 is like your B‐Day (this is what the
doctors called Saturday 7/25, when my new kidney arrived). After getting to the hospital at 8:50 PM,
the Doctors were lined up to greet me. Now there was no turning back, I was doing quite well on
dialysis. “Surgery will probably be tomorrow morning”, they said. “Is it good to keep the kidney on
ice all night” (what I meant was ‐ get it in ASAP!) Well to my relief surgery lasted from 12 – 4 AM and
the rest of Day 0 was hazy, except for lots of doctors checking in on me.
DAY 1
SUN
Oh My God It Hurts, Give Me The Pain Button! – Day 1 occurs when the pain kicks in
and anesthesia wears off. I hate to say it, but I was expecting a rather small incision < 3”, what I got
was >10” incision. The last thing I remembered before surgery was shaking Dr. Hamm’s big soft
mitts (MORAL: Hand size is directly related to incision length.) The one good thing they give you is a
pain button that will give you a shot of Narcotics every 6 minutes, until you get nausea.
DAY 2
MON
Sleepy Kidney, Will It Ever Wake! – Day 2 was one of some concern (30% go to sleep &
1/3 of those never wake up), I was in the minority! However, there was some good news by the end
of the day as urine output increased & I got 3 Sponge Bob Faces for taking my 3 walks. However, I
looked like a wounded soldier, carrying IV & catheter tubes & taking baby steps.
DAY 3
TUES
Heartburn Pain, & No Relief, But Family Arrives!– Day 3 was the most painful day!
I woke up at 2AM to the most pain I’ve ever had in my life, worse even then being fillet during
transplant! It was all caused by the high dose of steroids (Prednisone). That night my daughter, sonin‐
law & 4 month‐old granddaughter arrived. Kidney still sleeping, but urine output increases.
DAY 4
WED
Prednisone Nightmares, & My Persian Doctor!– Day 4 began with a smile from my
granddaughter amidst my continuing heartburn. Dr. Ali, my Persian Doctor friend, informed me that
the steroids may cause me to have vivid dreams. That night I dreamt about the worst NTM
community meeting ever, and awoke finally after a dog had bit me repeatedly! Kidney sleeping.
DAY 5
THUR
Kidney Awakes With a Fury!– Day 5 was turn‐around day as my new kidney started to kick
in and purify my blood (Creatinine dropped from 12.2 to 10.2). All my doubts faded and it felt like a
new beginning. Finally my catheter was removed and only my central IV line in my neck was left. I
walked about 10 times that day, even at 2AM, 4AM, & 6AM. Discharge tomorrow?
DAY 6
FRI
From Dialysis to Diabetes, a Hectic Day of Training !– Day 6 started with my drill
instructor chiding me that I hadn’t read my notebook and may not be prepared for discharge. This
followed with some hectic training on pricking my fingers, recording blood sugars, and insulin shots
(all due to the steroids). It ended with a shower & Gina getting soaked & a 7:30 PM discharge.
DAY 7
SAT
Finally At The Hotel, Now I Can Sleep, or Not !– Day 7 when I arrived at the hotel the
reality finally set in. I had a new kidney that was working and my life would be changed forever!
That night I couldn’t sleep as my joy was jolted by the thoughts of my donor and how he or she died.
Cardiac Arrest was the cause I was told, but little else. I’m eternally grateful!