A Slow Learner

Life is a succession of lessons that must be lived to be understood.
Helen Keller

In September of 1998 we got one of those calls that every parent dreads and fears – your child is ill or injured and you need to come. We’ve had a few of these, this one concerned our oldest, Melissa. She was in extreme pain from some sort of kidney issue and was in the emergency room in Menominee, Wisconsin. Jan and I rushed over and transported her to a better equipped hospital in our insurance system in Eau Claire. They determined that she had a severe kidney infection, the first of many, and put in a stent. She was hospitalized for two days until she was stable, and we were referred to Methodist Hospital in St. Louis Park, MN. After several exams and a CT scan there, we learned that Melissa had a “duplicated renal system”, and one kidney was malformed and had little function. Her first surgery was in January of 1999. You don’t expect a diagnosis like that for your twenty-one-year-old, but we reasoned that one could live successfully with one kidney.

Unfortunately, this was only the start of Melissa’s long journey of kidney issues – issues affecting both kidneys. There were times that she was so full of stones that the urologist stopped counting, so many that removing them would have caused even more damage to the kidney. After lots of treatments and surgeries over the years, in 2018 she was advised that while not imminent, there would come a day when she would need a kidney transplant. She, her husband Chad, Janice and I attended a daylong seminar at the M-Health Fairview Clinic on the University of Minnesota campus. They felt that Melissa would be able to postpone the procedure for perhaps four to five years. Although from time to time she still had issues, we felt that we had been granted a reprieve. Two years ago, her kidney markers fell to the level at which she was eligible to join the kidney transplant waiting list. We were taken aback and there were tears, but we knew this was coming. You could say that this was bad news, but you need to remember that it is not automatic that a kidney transplant will help the patient and that the patient is a viable candidate. We were blessed in that Melissa was declared eligible.

In the US, the National Kidney Foundation working with the United Network for Organ Sharing (UNOS) maintains and manages the kidney transplants waiting list. There are about 25,000 kidney transplants per year with several hundred thousand patients on the transplant list. Kidney transplants come from either living organ donors or deceased organ donors. A live donor kidney transplant is considered the best option for people with kidney disease. As you would imagine UNOS carries an awesome responsibility with keeping this priority list – literally life and death responsibility. They work very hard to ensure that deceased donor organs are distributed fairly. Decisions on who should get what kidney are based on a combination of blood-type and antibody matching, time with kidney failure, and a few other factors that give people priority on the list. One of those factors is how “sensitized” the kidney recipient’s body is. Melissa was highly sensitized.

Once you are added to the national organ transplant waiting list, you may receive an organ fairly quickly or you may wait many years. In general, the average time frame for waiting can be three to five years at most centers, but it is longer in some parts of the country. Obviously wait times depend on how many donors are out there and how hard you are to match. In some cases, a patient who needs a kidney can find a donor on their own who is a match for them, and the process can go very quickly thereafter. Sometimes a recipient can find a donor, but the donor’s kidney is not a match for them. In these situations, a kidney “paired exchange” or “paired donation” may be possible. That is, the donor gives their kidney to ANOTHER recipient whose identity is unknown to them, and their paired recipient is elevated on the list, to find a matching kidney from an unknown donor somewhere else in the US.

As Melissa’s blood markers fell to alarming levels, several family members stepped forward to see if they could provide a kidney for her, her biological sisters and a cousin. Unfortunately, from that group only Melissa’s biological sister Becky was an eligible donor, and she was NOT a match for Melissa. But she was willing to enroll in a variation of the “paired exchange” program, called advanced donation/voucher. In this process the donor goes first, and the recipient receives a voucher for a transplant later. This greatly sped up the process of finding a match for Melissa. Shortly after Christmas, as Melissa’s blood markers fell further the process began to accelerate. Becky was scheduled for her donation surgery on March 13 and Melissa’s transplant surgery was scheduled for April 2.

As you can imagine there was a flurry of planning, vacation and sick leave days scheduled, finding a place for Becky’s kids to stay etc. etc. March 13 arrived, and Becky was admitted early in the morning at the M-Health Fairview Hospital also on the U of M campus. Family members gathered in the waiting room for the five-hour surgery. It was a great success, and all of the waiters breathed a sigh of relief. But there was this other emotion, for that kidney went from one operating room to another where it was received by a forty-eight-year-old woman from somewhere in Minnesota. And as I write, I really can’t tell you what that emotion was, other than to say that it was humbling, heart-warming, joyful but somehow solemn. Becky was discharged just a day after her surgery, perhaps a bit too quickly according to the nurse that I sleep with. Becky’s recovery was/is slow in coming. She struggled with pain and nausea for several days. She is on the right road but it’s a road that is longer than any of us thought it would be.

Somewhere in Colorado, early in the morning of April 2, a donor whose identity we may never know, unselfishly donated a kidney. That kidney had quite a day. After leaving its previous owner it was transported, perhaps by ambulance, perhaps by helicopter to the Denver airport for a ride to the Minneapolis St. Paul International airport. From there it was taken by helicopter to M-Health Fairview on the U of M campus. Melissa was admitted at noon and was in surgery by 2:00 PM. Members of the same family waiting group watched for updates on the automated charts and also waited breathlessly as the transplant team relayed progress to Chad on his cell phone. Reports first came when Melissa entered the operating suite, then later reports that the kidney was on-site, later on when she was ready for transplantation, when the organ was in and connected, when it actually started to produce urine and finally when she was ready to be moved to recovery. There were shouts of joy and high-fives all around.

Melissa must be breaking all of the good records for kidney transplants. So far, her surgery has been a great success. She was discharged in just three days. Her kidney markers are better than they have been in fifteen years. Her pain is manageable, she is recovering very nicely. Yes, she has a long road ahead of her. She will be on anti-rejection drugs for the rest of her life. Especially for the next year she will need to be very careful about contracting illness, especially water borne illnesses. But at this point it is hard to see how things could possibly be going any better.

Melissa and Becky have both given rave reviews for the transplant team at M-Health Fairview. These people are world class. But in a wider sense, Becky was reflecting on the amazing level of effort it has taken for this miracle, the facilities and equipment yes, but especially the people. This must be a cast of thousands. Of course, our unknown heroine in Colorado and the heroic sister that we know in Minnesota have to top the list, but Dr. Ramanathan and his staff at the University were also heroic in their own way. Also consider the people who our daughters have consulted with at the National Kidney Foundation and UNOS. And there were hundreds of other doctors, nurses, laboratory technicians, certified nursing assistants, records keepers, nurse practitioners, physical therapists, kitchen and facility workers, schedulers, cab drivers, airplane and helicopter pilots and on and on. It is truly amazing what a concerted effort it was and humbling to consider how blessed we were by these people.

On April 2, after receiving the great report on the surgery, we held on for a while in the waiting room, awaiting the notice for when Chad would be able to go back to see his wife. As we were seated in the waiting area, we heard an announcement over the intercom summoning everyone who was available to participate in a “Walk of Honor’” on one of the wings of the upper floors. We were reveling in all of our great news and didn’t really pay much attention to the announcement, except for Janice. Our eyes met and she said, “Do you know what that is?” I said no and asked for an explanation. She told me when a very ill patient who has agreed to be an organ donor has reached the point at which they can no longer sustain life on their own, they are wheeled down the halls of the ward, with all of the hospital personnel and family silently standing by in tribute to them as they are transported to the operating suite for the removal of their donated organs.

Amidst all of our joy, it occurred to me that there was another family just like us, in another part of that hospital that was having the opposite emotions. They weren’t joyful and hopeful, they were broken, grieving, sad and despairing. I wished I could touch them and take some of that pain from them by telling them what a gift their loved one was making to perhaps MANY families. Would knowing that have made a difference to them at that moment? I’m not sure. I doubt that at that moment it would. It didn’t for me.

You see, my first wife Pam died unexpectedly thirty-five years ago. Our family was gathered in a waiting room, just like those at M-Health Fairview and there was no rejoicing there. Recently my sister-in-law and I were searching for some records regarding her death. We found the notice from the Minnesota Lions Eye Bank that both of her corneas were transplanted to others giving them the gift of sight. Pam’s mother faithfully copied down the words of another letter from the Hennepin County Medical Center addressed to me over thirty-five years ago. The letter noted among other things that both of Pam’s kidneys were transplanted to patients, one to a forty-two-year-old female and one to a fifty-two-year-old female both of whom were doing well.

It is amazing how long it takes me to learn some of life’s lessons. For thirty-five years ago there were families who were rejoicing as ours wept.

After all of these years, I think knowing this DOES help. It sometimes takes me a long time and the right circumstances to learn life’s lessons.