No, really, take it, I have a spare
Donating a Kidney: A Love Story
Being a Living Related Donor (LRD) for a kidney transplant... It's a good thing! It may not be the right thing for everyone. For me and my family, it worked. I'd like to share some of the things I went through so that you, kind reader, might benefit from my experience.
I donated a kidney to my mother, "Bunnie", on January 3, 1995 (Happy New Year!). The process leading to that day started about two years earlier, when mom's deteriorating health was finally pinpointed to her failing kidneys which were functioning at about 5 to 10% of capacity. Diabetes was the culprit. For the time being, dialysis was the solution.
At first, the doctors said that mom wasn't a good candidate for transplantation. There were other health issues they were concerned about. Even if she were a candidate, the waiting list was so long for a cadaver donor, the prospects did not look good. She was almost 70 years old. At that point, considering being an LRD was moot. She didn't qualify to receive. Mom and Dad trekked over an hour each way to Loma Linda University Medical Center (LLUMC) three times a week for her dialysis. Mom was exhausted, sick, weak and depressed. Dad was a champ and very supportive.
Later, the doctors determined that she would be a good candidate. That's when the fun began. All four of us kids were willing to donate should we be found to be the best match. I kind of knew (hoped? was resigned to the fact?) that I would be the one. I knew I had O positive blood type, the universal kind; I was the youngest; not married at the time; no kids, etc.; I thought I had a good candidate profile.
My three siblings were all tested and eliminated after the first basic blood test. No blood type matches. It came down to me. I matched type and three of six antigens. Pretty good stuff. I was elated. For me, it was a no-brainer. This is for Mom, for cryin' out loud!
I had heard that some folks really agonize over the decision, but that was not the case here. Finances are a factor for some, but I was fortunate that my job at the time had a great short-term disability benefit program (thanks again, Siemens ROLM!), so finances were not a consideration. This was something I truly wanted to do.
This brings up a point to consider: If more than one potential donor does match, how are you going to decide who will do it? We didn't have to deal with this question, since only one of us matched. But I tell you, it could have been a matter of contention. Mavis, my second sister, was so convinced that she was going to be the one, she was crushed when she found out she didn't match. I'm sure we would have worked it out. The Transplant Team is a great resource: the counselor, the coordinator, the surgeons (donor and recipient each have their own surgical team). Something to think about.
Mom and Dad live in Sun City, CA. I lived in Issaquah, WA at the time, about 20 miles east of Seattle. The surgery would take place at LLUMC if I tested out OK. We were able to arrange through the transplant coordinator to have much of the testing done in Seattle, at Virginia Mason. I even donated some of my own blood for the surgery in Seattle ahead of time, and it was shipped down and stored for the big event! I highly recommend this if you can do it.
I had more blood taken. I did a lung capacity test. I had x-rays taken. I did the 24-hour urine collection study. They give you this huge container into which you pour your collected urine over a full day. (Gain understanding of your housemates before embarking on this one!) There was the sonogram, the same kind of technology they use to look at babies-to-be in the womb, only they were looking for kidneys.
I had to go down to California for a couple of the tests. One was the renal angiogram. That's the most physically invasive of all the testing. They wait to do that one until all other tests have checked out. (Ideally, that is. We found out after the angiogram and after we were actually scheduled for surgery that they had neglected to order an AIDS test for me! I was mortified! Can you imagine? Anyway, be sure they do that real early - like as part of the first test would be good.)
My brother flew down with me for the angiogram. They prep you by shaving an area around the groin. They gave me a mild sedative, and wheeled me into the procedure area. After making a little incision, they insert this little tube into your big vein there (excuse all the medically technical jargon here, ha!). By injecting some special dye, the doctors can see the kidneys and all the related connections more clearly. It's through this process that they select which kidney they would like to have. This was a mildly scary and uncomfortable procedure. The doctors working on me had some difficulty getting the tube inserted and they had 3 or 4 false starts before it finally went in right.
After the procedure, you stay in the hospital for about 6 hours, in bed, as motionless as possible. My brother stayed with me most of the time, and Mom and Dad came to see me after Mom's dialysis treatment that day*. I was a little sore around the incision area, and achy the next day, but no big deal.
*(If you have any doubts about the value of being an LRD, hang out in the dialysis area with your relative for a while. It really gives you an appreciation for what that process is all about. Better yet, go with them often. See what it does to your schedule, energy, etc.)
I visited with the surgeon later, who said that they would take the left kidney. If they can take that one, they prefer to because the connecting vessels are naturally longer. There's more material to work with. He discussed with me the options for entry - either from the front or the back. He drew the incision lines right on my body to show me how it would be! He advised against the back entry for two reasons: One, although it's a more direct route, the recovery is more painful due to the splitting of the ribcage. Secondly, the incision scar on the back might be troublesome for all those sleek, low-cut in-the-back gowns that I wear. NOT! No, seriously, he asked me about fashion concerns of the incision! What a cool guy!
I asked him about the long-term effects of being with only one kidney. He advised that I probably should avoid activities that represent high risk for kidney injury, such as ice hockey, parachuting, and kick boxing. This is a little bit like the old joke, but doctor, will I be able to play the piano after the surgery? Sure, he says. Thank God, says the patient, I never could before! But seriously, with only one kidney left, you do need to be somewhat protective of it. He advised me to watch my weight, since I'm genetically predisposed to diabetes. That's about it. (I have had my share of Urinary Tract Infections before and since surgery - I consider these a major medical issue and my local doc has arranged for me to have a urinalysis on a drop-in basis if I suspect I may have a UTI.)
The other "test" I had to go to California for was to visit with the transplant team psychiatrist. We already had the surgery scheduled for October, 1994. Through conversations with the coordinator, the transplant counselor and some of the doctors, the team was concerned that there were "issues" that needed to be explored and resolved before we proceeded. The family was devastated. After nearly a year of testing, and passing all these difficult physical criteria, it came down to how we were feeling?
Mom and I met with the psychiatrist and talked about it. I think they were concerned that I was feeling pressured to do it. They also wanted to make sure that I didn't feel that by doing this, I was doing any "paying back" or anything. Doc said OK, and we rescheduled for right after the holidays. I would be 38 years old, Mom would be 71, the oldest recipient in the transplant program at LLUMC ever.
About this time, I began corresponding with a man I met in one of the chat rooms on America On-Line. We spoke on the phone and chatted on line until the first week of December, when he drove over the Cascades to meet in "real life". A few days after Christmas, it was my turn to travel to his side of the mountains. I was a mere 20 miles from my destination, when, HORROR! I ended up being the third vehicle in a five-car pile-up during a heavy snow storm on a mountain pass! As I felt the impacts - first from the front, then from the back - I thought, no, this can't be happening! We're only five days from THE DAY!
My friend drove up to the accident site and brought me down from the mountain, my car was not driveable. (I believe that being in my Ford Explorer saved me from major injury. It wasn't totaled.) He took me to the local hospital to be checked out. I had head & neck x-rays taken. I was sore, but I had no broken skin nor bones. But I knew I had to tell the transplant coordinator. I did, and she arranged for me to rush to Virginia Mason in Seattle the next day, so that I could have another sonogram. They had to be certain that I hadn't damaged my kidneys. If I had, the project would be called off.
Fortunately, on the Saturday before the Sunday I was to leave (New Year's Eve), they called with the results that I was OK. I didn't tell any of my relatives about the accident, only my brother and his wife knew, who I was living with at the time.
George (my brother) and I flew down to California on New Year's Day, a Sunday. On Monday, January 2, we all went to the hospital for the check-in ceremonies and final check-outs. A mild cold or flu symptom could have put the kabosh on the deal even that day. Mom and Dad, George, my two sisters, Betty and Mavis, and my uncle, Dad's brother, Mike were all there. It was quite the trick to explain what I was doing with an extra set of x-rays under my arm. "But Shelley," Betty, the nurse in the family said, "I thought all that stuff was done!?" By the end of the evening, my niece, George's daughter, Lisa, and a couple of Mavis' friends came to visit, too. Mom and I were in separate rooms, as she had some extra preparation procedures to do. It was mostly a light atmosphere, with undertones of the seriousness of the day to come. My brother and I were making jokes and planning something special for my surgical team.
At around 5:00 am on Tuesday, the family gathered around Mom's bed. Dad led us in prayer. Then they all came to my bed. Same thing. (It's making me get teary-eyed even now as I write this!) Then my brother & I went to work: We wrote little notes to the surgeons on little yellow sticky notes and put them all over my torso under my hospital gown. Things like, "Reclose carefully after opening." "This side up." "Lave los manos. (Wash your hands.)" I'm sure the nursing staff must have thought we were nuts in there, giggling like we were!
They wheeled Mom and I into the pre-op area, where our respective anesthesiologists chatted with us a bit. Then the oddest thing happened. They just left us there for what seemed like the longest time. I hadn't been given any pre-op sedative, I'm not sure if Mom had anything. So, there we were, just me and Mom. She expressed to me her fears, especially for me. I tried to joke a bit, make a date with her for shopping (her favorite activity) the next day. Soon thereafter, they came to take us away.
I remember being so surprised at how the operating room looked. It was smaller than I thought it would be, it was mostly yellow tile and it was cold. I expected white and stainless steel. The team asked me some questions to make sure we all knew who was who and what was happening. They asked again if I had any questions. I was pretty scared at this point, and started to cry a little. I thought about my yellow sticky notes and sort of grinned inside. They put the mask on me and I was out.
The next thing I remember, I was waking up to a woman's voice: "Michelle, Michelle wake up." I asked about Mom, and the lady said she was OK. Then I moaned in pain and said "It hurts!". Then I was out again.
Next, I was being transferred from a gurney to my hospital bed. My sisters were all there, and I remember Betty lobbying the nurses pretty strongly to get me my self-administered Morphine pump (I called it Dope-on-a-Rope). There was some sort of delay, the doc hadn't written the order or something, so they came and just gave me a shot in the bottom with the stuff. Then I was out again.
I don't remember too much about that first day. I remember lots of flowers in the room, my sisters, brother and Dad, Uncle Mike and nurses. Mom was OK, so the family was shifting between our two areas (she was in a different wing, but on the same floor. The recipient has to be quarantined for a bit.) I do remember the first night. They put these air cuffs on my legs that were filled with air by an electric (noisy) air pump about every 20 minutes. I hardly got any sleep at all. The nurse said I had to have them until I could get out of bed. That was surely motivation, and I was out of bed, with lots of help and only to the chair by the bed, the next day.
Very late that first night, I remember Daddy coming to see me. I think it was about 10:00 pm. "What are you still doing here?", I asked. He said that he just wanted to say good-night, and they would be going soon. What they didn't tell me until a few days later was that Mom was hemorrhaging badly, and they were rushing her back to surgery. It was a close call for Mom that night, but she made it!
The day after surgery, and it seemed like things were going to be OK. My sisters were visiting with me, and I told them the accident story. They about fell out of their chairs. Now Betty understood about the x-ray envelope! They promised they wouldn't tell Mom. We didn't want to upset her. (Unless Mom got internet access without my knowing it, she still doesn't know!) Also on that day, the surgeon stopped by to chat. He said that he and the team got quite the chuckle over the notes I left for them!
I used my Dope-on-a-Rope when I felt I needed it, although I remember telling my sisters that it made me feel dopey and really didn't relieve the pain. I was starting to walk around the hospital ward hallway, connected to IVs and with the catheter still in, on the second day. Third day, they removed the catheter, and with help, I could make it to the bathroom. The pain was pretty good, if you can call it that. It's interesting, because, here you are, a healthy person, going in for surgery, and coming out in so much pain. It's weird to think about sometimes.
My family was terrific, but then, we do really good hospital. They brought me little gifts and flowers and visited and called, and it was really supportive. Mavis has this infectious giggle. She was sitting on the end of my bed on the third day, and something set her off. I can't resist that giggle, and it hurt to laugh! I tried to kick her through the covers, but that hurt, too! It was miserably wonderful and funny!
I went to Mavis's house when I was released on the fifth day, Saturday. It was pre-arranged that I would stay there for a week or so, before I could travel back to Washington. Betty stayed for most of that week, too (she lives in northern California), helping Mavis and getting Mom settled when she got released on the seventh day, Monday. On the tenth day, Mavis took me back to the hospital to get my staples out. It didn't hurt too much, mostly an odd sensation.
OK, get ready for some pretty base stuff. Because of the anesthesia and pain medication, you get kind of constipated. Here it was, over ten days since my last "movement", as they say, and I was pretty miserable. Finally, I think it was on Thursday, I got relief. It's hard to explain how satisfying that was. Hope that wasn't too gross. It's real.
My sister-in-law, Sue (George's wife), traveled down to escort me back to Washington. We all went over to Mom & Dad's house the night before I went home for a big farewell dinner. Tears were shed, thanks, hugs and kisses. It was pretty neat.
The trip home was uneventful, except for the fact that I was being pushed around in a wheelchair. I felt very vulnerable in public. I was afraid that someone would bump into me. We sat in the bulkhead seat and played Travel Scrabble.
I had eight weeks off to recuperate. In the first week I was back in Washington, my mountain friend, John, came to visit. He came to visit the next week, and took me home with him to visit for a few days. I could lay around on his couch as well as on my own. I ended up spending most of my recoup time there. By mid-February, we both knew it was a done deal. We were married in July of that year.
I can't tell the kidney story without telling my love story, the two are so intertwined. But one could say that they are both love stories, and I would have to agree.
Two years later, Mom was doing well. She had a rough time in the first year, but they resolved most of those issues. They were not kidney-related, but other things. Fifteen months after our surgeries, Mom and Dad celebrated their 50th wedding anniversary, surrounded by friends, family and some of the transplant team members. They didn't think that Mom would have made it without the kidney.
I feel great, never have any problems. I miss ice hockey and kick boxing, but the parachuting was really never my thing. (Right!) There is still some numbness around the incision and even my belly button, but it's not a bother.
If any of you are considering being an LRD or are already scheduled and have questions or concerns, drop me a note. I'd be happy to help if I could. Take care and good luck!
UPDATE, July 2001 (6 years after the transplant)
Mom died. Two small words, a moment in time, and our lives will never be the same. She's gone!
In mid-May, 2001, Mom underwent surgery to replace the atrial valve in her heart. The decision to do this was a difficult one to achieve for both Mom and Dad. The doctors had told her that the chances were better that she would benefit from the surgery than not, but the risks were high. Without the surgery, the doctors didn't think she'd live to see the new year.
All of us gathered at Loma Linda University Medical Center again. The doctors couldn't do as much as they hoped for her atrial valve, there was so much damage. Her mitral valve was "shot", too. Things were not going as well as they hoped, but they were still optimistic. The first couple of weeks after surgery were pretty bad. Mom just wasn't coming around. Finally, things started to turn around, and she began to take a few steps with the support of a walker. The cardiac unit at LLUMC could do no more for her at that point, and authorized her transfer to a convalescent home.
She was there for a couple of weeks, taking more steps with the walker. I talked to her on the phone about 3 times a week. I had plans to travel from my home in north central Washington State to southern California for a visit with her over the weekend of July 13.
The Friday before that, the 6th, Mom was taken back to the hospital. She had developed a urinary infection and her kidney wasn't working. On Tuesday, the 10th, I got the call that she had 12 to 36 hours to live. I got a flight out and met my sisters at LLUMC around midnight. The three of us sat around her bed and shared memories and talked to mom. I will never forget Betty cleaning Mom's fingernails. "Mom would be mortified to be seen like this!!!!" It was so sweet and tender. Mom's breathing got slower and weaker until she simply did not take another breath. It was a little after 2 a.m. on July 11, 2001. She was a month shy of her 78th birthday.
Mom worked hard to take care of herself and the kidney after the transplant surgery in 1995. It wasn't easy. The immuno-suppressant medicines (anti-rejection) were very expensive. All four of us kids donated to the "Bunnie Fund" to help with the costs when benefits ran out.
We all miss her so. She's gone, yes, but will live on in us. She was a great lady and taught us all wonderful things. Most of which, is our love for our family.
I miss you, Mom.