Chad’s Non-Directed Donation Story
Here’s a little information about me. I’m average. I’m a regular guy working a regular white collar job making a little above the median income for the United States. I live in a middle class neighborhood where my kids attend public schools. There’s really nothing uncommon or unusual about my life. As a Christian I see truth in many other sects and religions and welcome truth however it might be packaged. One such truth known to the Christian world is The Golden Rule: do unto others as you would have them do unto you. Many other religions have strikingly similar beliefs. This fundamental truth was the impetus of this journey. I attend a church every Sunday and give regularly to charities and volunteer as an adult leader in the Boy Scouts of America. I’ve been married for nearly 20 years with three children 17 and younger. I like gardening and enjoy backpacking, hiking, camping and generally being out of doors. I’ve been a regular blood donor for the past 22 years and still give blood every eight weeks. Perhaps two years ago I underwent testing and registered to be a bone marrow donor.
Quite a few years ago, probably four or five, I recall hearing radio advertisements for what was called “kidney cars.” These ads requested that instead of hauling a non-functioning car to the scrap yard you could donate it to the National Kidney Foundation. It was refreshing to see that something good was coming from what others would consider to be junk. What a great idea!
About a year ago I remember reading stories of what was called “live kidney donation” by spouses or family members. I saw a billboard of an NBA player who donated a kidney to a sister. There was even a US Senator who donated a kidney to his daughter. Then there were stories of friends and work associates donating a kidney to someone in need. I was touched by the kindness of such people and marveled at their courage and determination. As if that wasn’t enough I started seeing still other stories of strangers, so called “Good Samaritan donors,” giving a kidney to whoever needed it. It was at this time that the logic of such an act struck me. I have two healthy, functioning kidneys and someone else (79,000 and counting) is in kidney failure and needs one of them. Usually that someone else has lived a life of multiple serious medical conditions requiring prolonged hospital stays, dialysis and a poor quality of life. I, on the other hand, have lived forty-two years of nothing but health and activity with no serious disease or injury. I haven’t abused drugs or alcohol and my family’s health history is great on both sides with no incidents of cancer, heart disease, stroke, diabetes or other serious health problems. If not me then who should donate a kidney? The logic of it all still strikes like a lightening bolt. Given the advances in medical technology and the tremendous success of less evasive laparoscopic surgical procedures coupled with anti-rejection drugs and the significant difference in living donor transplants verses a deceased donor the evidence for me to step forward piled up. It was the right thing to do.
In November 2006 I went to my state’s donor registry and began reading anything and everything on living kidney donation. It listed a very clear step-by-step process of how to become a living donor. I sent off an email expressing my wishes and was soon contacted by a counselor who wanted to meet me in person. At this meeting the counselor, who is a coordinator for the state donor services, wanted to know why I wanted to do this and if I understood the donation process. When she was satisfied with my answers I was referred to the live organ donor coordinator with a state university who would become my primary contact for the next several months of testing and evaluation. This included complete medical and social history forms, medical and psychological evaluations and lots of blood tests. My journey through this process included the personal philosophy that if anything at all was even slightly abnormal I would back out. Given the thoroughness of the testing, that chance is quite high and few candidates make it to actual donation.
At about this time I brought my wife into the discussion and shared my intentions. She had some good questions I was able to answer, and some I could not. Being a husband and father of three children I did not want to jeopardize my health, well being or most importantly, my life. The surgery, though very successful, is not completely without risks. Here’s where my logic once again took over. I face a greater risk driving to work on the freeway every day than the risk involved with donating a kidney. Indeed there are many risks I took and continue to take every day. Life is not without such risks and few if any offered such a favorable outcome as this one – at the very least a human life would be significantly improved and at most could be saved. To me it just made sense.
One decision I made early on was that as few people as possible would know about this. Initially this included the future recipient. I didn’t want any strings attached to this and wanted to be certain my own intentions were solid and without any expectations of any form of compensation or recognition. This was to remain anonymous. One such Litmus test was the initial intention to use my own sick leave for the surgery and subsequent three to four weeks of recovery. This in essence put my money in close proximity to my mouth. Later I found out my employer grants up to 30 days of paid leave for organ or bone marrow donation. Once again, the evidence pile was growing.
Over the next few months I shared my intentions with some very close family members and friends. This evolved to include first my children, then a sister, father-in-law, a brother-in-law, my parents and a couple of very close friends. The circle was very tight. Part of this was because I didn’t want people to worry unnecessarily and knew that at any moment in the process I could be excluded as a donor. Because of the leave I did have to tell my employer but did so with a confidentiality clause which was honored. Strangely, I did share this with one person on-line that I’ve never met in person. He donated a kidney to his sister. Prior to sharing this with him the many, many stories I had read of kidney donation seemed almost fictional. It helped me validate that there was at least one person who had really done this without any ill affect. I reasoned that as the time drew closer I would bring a few more people into this circle. My conversations were more informative rather than seeking feedback. Surprisingly this information sharing was met with unanimous support. There were a few questions and it was reassuring to know these questions were some of the same questions I initially had.
The meeting with the surgeon went well. I could tell there were/are still some philosophical and maybe even ethical questions in the medical community about living organ donation. He didn’t question nor doubt my intentions but offered that donating a kidney was something he could not do. I could understand his reasoning. It isn’t for everyone. I’m presenting myself as a healthy, completely functioning person to have a healthy, functioning kidney removed from my body. Such seems to run counter to the Hippocratic Oath to, “Never do harm to anyone.” Again, given the historical outcome, this procedure will do no harm to me or otherwise limit or shorten my life.
With only a few short weeks to go I began studying the actual surgical procedure and had some questions which I forwarded to the surgeon. My questions were answered promptly and I was at peace with how everything was going. I continued to browse the web for information and experiences. For whatever reason, I especially enjoyed personal first-hand accounts from people who have donated a kidney. I enjoyed the similarities and the differences. I appreciated their honesty and advice and made mental notes of what to do once the call came. It was helpful to write this story and recall all that has led up to this point. In recounting the process from the beginning it has reaffirmed the decision to proceed. While occasional very mild bouts of panic wash over me, none of it has ever caused any doubt. It’s a big thing and at the same time it’s a small thing. As the years pass and this becomes a distant memory it will become even smaller.
After my wife the first person I told was my sister. She wasn’t too supportive and at one point advised me to, “Let this one pass.” Over the next several months I kept her informed of all the tests and the entire process beginning to end. With time she became more accepting but I didn’t know why until just before surgery. Ironically, in the midst of this, a close friend of hers suffered kidney failure. About two weeks before my surgery date was scheduled, he died. He was 47 years old. She and her husband had urged him to contact his estranged family but he replied, “I would rather die than ask them for help.” My sister shared this with me after the funeral. She now needed no convincing. I’ve always operated from the perspective of my own family. If I needed a kidney I know all available candidates would step forward to be tested. Never had it occurred to me that someone wouldn’t have a family. More ironic still was the fact the eventual recipient was an only child. Where my own family is quite large with many potential donors, hers was as small as it could possibly be. It was a sobering piece of news. We just don’t know. Certainly my family was another piece in my ever-growing pile of evidence, both in terms of how I was taught and the examples I’ve been shown.
In early September, 2007 I officially scheduled the surgery date of October 5, 2007. It all came down to this date. Leading up to the actual surgery there was some final labs to be done the week before which consisted of more urine collection (by the gallon!) and blood samples. They called the blood samples a “rainbow” because they filled one and sometimes multiple tubes of every single color designation available. It seemed like they took a pint every time. I also had one last meeting with the surgeon which my wife attended with me. I would add that throughout this whole process everyone kept saying, “You know you don’t have to do this and can back out at any time.” Even as the anesthesiologist was putting the IV lines in my arm there was another nurse having me sign forms and confirming I was doing this on my own accord. Their puzzled looks were actually quite funny. It seemed strange to be laughing at such a serious moment but in a way it was also very comforting. In all I was asked that question probably fifty different times. Not once did I think, “Maybe I shouldn’t do this.” It was a decision with such clarity that there was zero doubt. Other than getting married I haven’t made too many decisions like that.
The week before the scheduled surgery there was an attempt at arranging a paired donation with a recipient who had another person who would also donate. It was a mad scramble to complete all the testing and work it out. This first recipient had been tested and was a match just three weeks before the scheduled surgery but then rather suddenly developed an antibody to my blood that would make the donation impossible. The blood tests were done twice to make sure and it still wasn’t a match. At that point I was asked if I wanted to proceed with the surgery on October 5 or wait for another possible paired match – this was on Tuesday, October 2. They told me they had another match and were prepared to move ahead so I said, “Let’s do it.”
We awoke at 4:30 a.m. to get ready and make the forty minute drive to the hospital. My wife, twelve-year-old son and I made the trip. We arrived right on time at 6:00 a.m. and were taken to a surgery prep room. I was given the usual hospital gown that ties down the back and told to remove all clothing, jewelry, etc. After a brief wait nurses, doctors and surgeons began flooding the room. Each one had a form to sign or a needle to stick in me. They even had me use a blue magic marker to write on the left side of my stomach which kidney to take; again, more comforting laughter. The anesthesiologist again appeared and stuck a syringe in the IV line and said, “This will help you relax.” The sides came up on the operating table and after kissing my wife and son goodbye we were off. It didn’t take long for the relaxing to begin. I vaguely remember the ceiling lights in the hallway whizzing by overhead, the elevator doors opening, the circular operating room lights looming over me like big UFO’s then a mask was placed over my face and that was it.
The next memory is hearing a woman in the recovery room moaning and groaning very loudly. I kept thinking, “Can’t someone give her something – I’m trying to sleep here!” She gradually settled down and I remember a nurse leaning over me and saying, “You’ve done a great thing.”
It has been four days since my surgery. It was tough; two, inch-long incisions about three inches apart at my waist line for the laparoscopic instruments and one four-inch incision around my navel to extract the kidney. Though tough, it all went as expected with no complications or problems. The donated kidney began working immediately and the recipient was making progress as well. Men who donate kidneys usually make a big deal out of the catheter. I was grateful to have it because once removed I had to get up and down to make it to the bathroom which was a new experience in pain. I began walking around the day after surgery. Between the morphine pump and a local anesthetic at the incision, the pain was not too bad. By the second day (Saturday) the catheter was gone and by the third day the IV lines started coming out. By day four I was taking Tylenol for pain and ready to go home. My movements were slow and at times exhausting but with each passing day the pain diminished and I could move a little faster. My first night at home wasn’t too bad and I awoke with an appetite but soon was feeling quite nauseated. This was followed by clothes-drenching cold sweats and chills. Something was amiss. A trip back to the hospital revealed a bladder infection most likely coming from the catheter. Within a few hours of taking the antibiotic I was feeling better. By the next day the appetite was back and I was craving a McDonald’s cheeseburger and fries.
The most lingering discomfort was a constant side ache that left me wondering if perhaps I had a hernia where the laparoscopic instruments had been inserted. Sneezing and/or coughing proved to be the most painful experience. While bracing my stomach with a pillow helped, a pillow wasn’t always at hand for those unexpected sneezes. Then one day I sneezed and nothing – the knife in my side was gone! Over the next several weeks the side ache slowly diminished before vanishing completely. One month post-op I took a business trip across the country with no ill affects.
It has now been two months. What a journey! I feel absolutely the same as before donating. No pain, no discomfort, no lack of energy – 100 percent! Even the scars are fading nicely. The last blood and urine tests revealed a creatinine level of 1.0 (compared to .8 pre-op and 1.2 one day post-op). I’m scheduled for three, six and twelve month blood and urine tests to verify my lone kidney is functioning properly. After that it’s once a year for at least five years. Absolutely none of this has cost me a dime. The recipient’s insurance has paid for it all.
Twelve days after the surgery my wife and I met the young lady that got my kidney. She was back in the hospital because she had caught the flu and was unable to stay hydrated. Despite not feeling well we had a wonderful visit with her, her mother and her husband. We laughed and we cried. It was a beautiful moment together. I left her room knowing I would do it again. A little over a month after surgery we met in a restaurant where it was wonderful to see she had gained strength and once again we had a wonderful visit with lots of laughs in comparing hospital and surgery stories.
It has now been two months since the kidney was put in place. It has functioned perfectly for the recipient and all her labs have been very normal. I’m grateful that since surgery she has maintained contact with me through email and we’ve shared some very wonderful moments as she progressed in her recovery. No more daily dialysis, no more dietary limitations and most of all hope – hope for a normal and long-lived life. It has been a remarkable journey for us both and yes, I’d do it again.
Over the last several weeks I’ve heard bits and pieces of the recipient’s story; some from her and some from her mother. For everyone involved this has been an act of courage and faith. I don’t believe mine to be any more or greater. Indeed, her hope and courage as she faced the ravages of kidney disease have inspired me and most assuredly placed my meager problems in proper perspective. Knowing her and her family, I am a better person.
While I started this process wanting to remain anonymous I’m ending it wanting to increase awareness – hence this story on the web. Too many people are needlessly suffering and dieing waiting for a kidney. That isn’t something that changes by people being quiet about it. Gandhi said, “Become the change you want to see in the world.” I believe there are enough people out there to make this change in the world. Whether the motivation for donating is from a religious, humanitarian or clinical perspective – I don’t think the people waiting for a kidney care,