A Badge of Honor

Donating a Kidney to my Sister

San Francisco, May 31, 1994
by Charles M. Uzzell

"I wish neither to gloss over the difficult parts, nor oversell you on the gloriousness of this experience..."

My sister needed a kidney; I had a spare.

I had no trouble deciding. It was just a known fact in my mind, a given, a no-brainer. When I heard her kidneys were failing, I knew somehow that I would be the one to give her a new one. I appreciate the mixed feelings one has when deciding whether or not to give an organ. I am, after all, scared of needles and hesitant even to give blood, which I have done twice just to find out for myself that I really was afraid of needles. For twenty years, I watched my friend Tom Moore suffer with end-stage renal disease and through two transplants. End-stage renal failure is not usually fatal in itself.

There is, however, strong evidence that the recipient will be better off with a living related kidney instead of a cadaver kidney. In laymen's terms, the kidney will be fresher and probably a closer match, so will last longer with less drug therapy (and the drugs killed my friend Tom Moore). Also, the recipient, your relative, will not have the agony of waiting for a cadaver kidney.

You should know that there are people in the medical community that will not perform or sanction living related transplants because of the unnecessary risk to the donor (i.e., why operate on a healthy person?). Having been there, and seen the improvement in my sister's life, I think it was worth the risk. How often do we see our loved one suffering, and can actually do something about it?

IMHO you should weigh the factors and assess the situation on your own. Decide in silence without consultation with any other human being. The big issue, really, is can you afford 6 weeks off your feet while your body recovers from the surgery? When you decide to proceed, then you will get opinions from many different persons. It is similar to what pregnant women experience; they invariably hear a lot of good-and-bad birthing tales. A social worker, who can independently prevent the transplant, will ask if you are being forced into or paid for your potential donation. My interview with the social worker I found to be very helpful and confirmed my decision.

The right decision for you, however, might be NOT to donate. I fully uphold your right to decide on your own. I do not know of any donors that are not between the ages of 21 and 65, but they might exist. You must be in good health and not at risk for kidney failure yourself (one of my brothers had nephritis as a toddler). I am not supposed to play football now, but I can participate in any other sport. Since I run my own business, I needed a good excuse to take a 6 week vacation. My sister Monet lives in California and I still live in our hometown of Raleigh, North Carolina.

Finding out if you are a match involves a simple blood test. The local lab folks drew some vials of blood (one stick) and Fedexed the samples to California. I was the first to volunteer in our family of five. Then I turned out to be a perfect match! This moment was the most emotional one of the whole thing, when the results came in. My mom was there and we both cried. All six antigens matched, despite the fact that my sister and I have different blood types.

Then I got a super bang up physical. (The bill, paid by my sister's insurance, was over $900.) My doctor, at the start, asked if there was anything wrong with me. I said I was out of shape and a little bit overweight. They took blood and poop and urine and ....did I miss something?...and poked and prodded, etc. etc. I had never had such a good physical. After all that, he said, " You have no contraindications for the transplant, but...you're out of shape and a little bit overweight."

Our transplant was at California Pacific Medical Center in San Francisco. The hospital folks are great. All the procedures that I dreaded turned out to be nothing...the IVP, needles, etc. It was major surgery, however. The transplant coordinator is your best friend. Mine was Sarah, a 5th generation San Franciscan. Tall, beautiful, easy to smile and a doer. She got results. Dr. Bry was my surgeon. He is a shy, handsome man. Appears to be young, but if you look closely, he has been tired a lot, which is mixed in with a few laugh lines. He is confident, knowledgeable and pleasant. They answered all my questions both big and small.

I have really fallen in love with San Francisco . So gorgeous and sparkling; like no other city I've seen. My wife and I had a lovely trip down the coast of California. We went south from San Jose all the way to Hearst Castle, a cool place to visit. Then we stayed at the Ragged Point Inn 15 miles north of San Simeon on CA 1. Beautiful inn. Big Sur is awesome.

I had to be in the hospital for an IVP and arteriogram on the Friday before the Monday transplant. These two procedures I was dreading, but they were nothing other than boring. My wife stayed through that, but she was not interested in being at the hospital during the long-winded surgery and recovery. She flew home and took care of the kids and worked hard at our Montessori school. My mom arrived to take care of us, and I suggest you have some support available for the big day. Imagine though, how my mom must have felt, having two of her kids in surgery the same day. Meanwhile, we received some flowers from the Puryear's several days before the scheduled surgery date. These were wonderful while hanging out at Monet's house; don't forget to remember folks during the weeks leading up to the transplant.

Check-in time at the hospital was 6 am. Monet lives an hour away from San Francisco, so we spent the night at Bill Grove's house in the city. The fellow in admitting at 6 in the morning was a kind, graying gentleman, directing people this way and that to the proper place. Otherwise, the whole lobby was quiet and subdued at that early hour. He checked me in. Then he stood, like he had done with 3 previous patients, walked out to the hall, and said, "You go down to Same Day Surgery. All the way down the hall, last door on the right, take the elevator to the 6th floor." He sounded just like a scene from the Monty Python movie Life of Brian, "Crucifixion? Good. Line on the right, one cross each." He was sweet, polite, but routine. I thought it humorous and it put me in a good mood for the preparations.

We said good-bye in the lobby. My sister and mom had a difficult wait-time while I was in surgery. Tina visited them and was very upbeat and talkative, which helped to pass the time. I was in surgery too long, an extra 2 hours or so. The doctor, when finished, went out to them in the waiting room. He said it took extra time because I was a big fellow and had an extra vein leaving the kidney; but all was fine.

Then Monet was prepared for surgery; Dr. Bry did both of the operations. I used to think, perhaps because TV portrayed it this way, (read the newsgroup or see FAQ bit.listserv.transplant ), that both people are there in surgery together, and the doctor rips it out of one person and dumps it into the other. Really, there is a couple of hours delay between the two operations. They finish the donor, flush out the loose kidney with some solution, and keep it fresh with some TLC. Then the recipient goes into surgery and ...that is another story.

I was quite jovial going into surgery, during prep. In retrospect, I was probably kinda' weird. It is said that humans going into religious martyrdom have elated emotions. There was a woman going in for a hysterectomy that was just about in a scream. I, the patient in the next wheelchair getting prepped for surgery, was able to calm her down and we had a good chat. So if I am ever accused of any sort of magnanimity or something, it is for helping out this woman. It was nice to have somebody to talk to; I was rather talkative, I think, but not physically shaking. This part goes by very quickly. I was taken into a room just outside the operating room, got on a gurney, and had an epidural inserted and then was anesthetized. The doctor and nurse later said I was telling Bill Cosby jokes at this point, but I have no recollection except the nurse's smile. I have always loved the tape, Bill Cosby "Himself."

My next memory is someone shaking my shoulder, saying, "It's over. You're in the Recovery Room. It's over." And being nauseous. This was probably while being wakened for a check-up. I think it is very odd that we humans seem to have a sense that time is missing, even when we've been completely unconscious. (Like what happened in this Star Trek TNG episode when Data tries to get them out of a jam.) In other words, there was only an instant in my mind between the nurses smile and 6 or 8 hours later waking up briefly in Recovery, but something else in me acknowledges the missing time. Wonder if I was still talking? Lordy, and we worry about pooping on ourselves and that sort of thing.... BTW, they always insert the Foley catheter while anethtisized; this actually the only request I made of Dr. Bry. It was already in the plan. There is no pain at this time. It's sort of foggy, really.

At 6 p.m. the same day, they put me in a room. The gurney bumped on two sides of the doorway going in at an angle. This did not hurt, but it is a memory, and I woke up and pretended to help. I was conscious of a roommate. My mom and Barb squeezed my hand and had brave, happy faces, but I could tell they had been tense, like staying up for two days studying for an exam. Tina was there somehow, and my other sister Holly arrived from South Carolina.

Nausea is the big problem at this point. Some nurses helped me move and I stood up next to the bed! But this made me dry-heave. I felt not pain, but a tightness around the waist. Like having a belt on 2 notches too tight. I am not fond of throwing up, so this is the thing I hesitate to report to you. I hope this report will help others to donate blood, kidneys, portions of liver, and marrow. I wish neither to gloss over the difficult parts, or oversell you on the glorious experience. I was given medicine for nausea and slept.

At one am, the IV type drip into the spinal epidural ran out and beeped. The night nurse changed the bag and re-started the machine. The new bag of drugs did not work! The epidural had stopped functioning. The pain was on my left hip, very near the waist line towards the outside, a good 4 or 5 inches from the incision site. The incision site did not hurt, but the bandages or something continued to give a sensation of tightness. The pain was from the superficial nerves that are cut during surgery that serve the leg. I think this is called referred pain. Blissfully, I remember that I experienced pain but do not have memory of the pain itself.

The night nurse hourly gave me pain shots that helped a lot, but I was not very comfortable this first night. The other side of my body was "asleep" and sending messages to turn over, but I couldn't lie on the bandages' side either. The doctor had said that I would be in so much pain the first day that I wouldn't worry about the Foley catheter. Right he was! A nurse, Charlene, saved me at 9 am the second day when she checked me then immediately called the doctor. The anesthesiologist puzzled over me for a bit, and checked piping, etc. Then he injected some stuff and said I should immediately feel a big difference. Nothing. He un-taped me. Man, I was wrapped like a mummy. Then he put me on a morphine pump, via the IV tube already in place. RELIEF. I did not have any more pain, normal by comparison. Morphine, I guess, would be my drug of choice (LOL). Really, the morphine pump is a fabulous invention. For a positive experience with spinal epidurals, see Steven Blakeman's account on TransWeb .

The Foley catheter was bothering me, not because it hurt, but because it would flop around and pull leg hairs. A Doctor came by with a group of about 5 students (residents?), and asked how I was doing. I said, "Okay, but the Foley was bothering me could I have a little piece of tape?" He turned to his students and asked what they would do, but before they could answer he said, "Take it out!" And I said, "No!" because I couldn't imagine going to the trouble to pee. The students were slightly amused that anyone would say NO to that doctor, but Doc was not phased by my request. The nurse came in after a few minutes and took out the Foley. It does not hurt in the least to have it removed, but is a weird feeling. It took the rest of the day before I could pee, and I feared that they would put the damn thing back in if I complained, so I didn't. Later I would fully realize that I was receiving excellent care, and they would concede to just about any request.

This was June 1, my second day after surgery. I was able to walk down the hall and visit my sister. She was doing great! You know my big fear in all this was not that I would die, but that the transplant might fail or the kidney be rejected. She had some drug dosage issues, but few surgery related difficulties. And she had a VIEW. Man, her window was like sliding door size and looked out over the most beautiful city....

Other than hurting my back at 6 weeks post-surgery, which lasted a couple of days, I did not have any more problems.

Living-related kidney donation is beyond any experience I have ever had before, and is difficult to properly describe. Perhaps blasting off in a rocket is comparable. It is something for which you train, test, practice, and think. It affects many people in your life, and could be dangerous. When the moment finally arrives, it goes by so fast that it is almost anti-climactic. The end result is the enrichment of another, and consequently, your own, life. The event has a certain routine and known result. Circle the moon and return safely to meld back into a normal life. Always the knowledge is there, but I am no different or better than anyone else. I have a lovely scar to show off, my badge of honor. And as my friend Brad said, "All badges of honor with women involve big scars."

Charlie was my roommate in the hospital. He was in for gall bladder surgery and ended up in the transplant ward because of overcrowding on another floor. He was 86 years old and the liveliest trick you ever met. He and his wife Bea have been married for 60 years and 7 months. "What do you do on your 50th wedding anniversary?" she asked, and was going to tell about their month-long world cruise, but Charlie piped in and said, "Go to bed." Smile. Monet and I visited them after leaving the hospital. We had a fabulous lunch, saw Bea's paintings, and laughed heartily. They traveled a lot. Got dysentery in India, and were mystified by the burial practice of letting the vultures eat the dead, and all that. Bea told about their trip into the Grand Canyon on donkey-back. Charlie said she got off the donkey in the same shape that she had been riding. Couldn't move. Completely paralyzed. They are a fun and happy couple. Bea was born in the Mission District in 1908. Charlie was born in Nebraska but lived whole adult life in San Francisco. Charlie met Buffalo Bill and Annie Oakley when they were doing their big show. Other quotes from Charlie: "You know what's wrong with your generation? You think you invented sex." ..."Golden Gate Park used to have squirrels, and little rabbits, but the hippies ate them." "I thought the hippies were vegetarians." "I guess not." We were standing on Twin Peaks, looking down at the Slot, Market St. Everybody either lives North or South of the Slot. ...When about to go down for his gall bladder surgery, Charlie said, "Here I go. They're gonna' make me swallow a speedometer cable."

Thank you to the following folks:

Gary Garchar for love, support, and the ride to the hospital
Susan Goff (another LRKDonor) for the ride home from the hospital
Charlie & Bea, George & Betty
Barbara Langworthy for plants, meals, love circle, helping momma
Tina Scott and Cecco at the Dolphin Club
Gael Sullivan and all the circle friends
Andrea. Mom & dad, Holly & my folks
B3 & Grammie
Charlene, Lousie Clemmer, Margaret Dale, Becky Beston, Martha Brown & Mark, LA & Tripp, Mary Faith, Scott & Karen, Chris, Kay, Bryce, Becky, Armand. Mary Ann & Mark, Barry Harmon, Chris, Karen, Cindy & Anna, Jim Jam, Clay & Mary, Jack & Connie, Temple for the bike pump, the book, & watching the kids
The Puryears and the Pettys, Ruth Bailey, Mary Louise Uzzell, Susan, Albie & Jonathan
GG who is most likely now enjoying heaven
SPC and Claris, Joan & Ed, Toler, Ann Bibb, Terry & Doug, and my sweet kids, Molly, Puff n' Pete

Hey. I always wanted to thank these folks in some way other than the traditional card I sent. Feels like an album cover or something.