Norm’s Story

I typed this, and then I reread it and realized that it’s much too long to expect anybody else to read. However, I also realized that, at bottom, I really don’t care if anybody else ever reads it. In hindsight, I realized that I wrote this for myself. Not for anybody else. I’ve never before put many of these thoughts on paper, or even shared some of them with anybody else. And doing so has been good for me. So, here goes.

I was totally unprepared. I thought I was prepared. I had told my friends and myself that I was prepared. I had researched. I had read. I had visited donor websites. I had talked to friends and to family. I had even talked with a very old friend who is a cadaveric kidney recipient about her experiences. I had done my homework. But, what are the chances that I would be the one? Remote at best, I had thought.

But there I was, standing in the hallway of the National Institutes of Health in Bethesda, Maryland, when the transplant coordinator said, “You’re it. Are you still willing to do this?” Whoa! It took my breath away. I had to ask for the night to think it over. As if I hadn’t spent many nights thinking it over already.

I can’t begin to say now how many nights I had laid in bed in the middle of the night thinking to myself “How in hell did you get yourself into this?” But each time I had told myself that God wouldn’t put me in any situation that she didn’t think I could handle. After all, my whole life has been filled with situations where I had asked myself “How in hell did you get yourself into this?” I had endured Infantry Officers Candidate School as the Vietnam war heated up. I had served as a Military Intelligence officer as a Green Beret in Vietnam. I had appeared and argued cases in the United States Supreme Court. I had faced hundreds of eager and inquisitive law students as a law professor. I had represented murderers and other unpopular persons in the face of hostility from the victims, their families and the entire community. I had thought that nothing could undo my calm. But nothing could have prepared me for that moment at the NIH. Nothing.

It had all started so innocently. And it had come to this. Whoa! Simply put, I was afraid. I was afraid of the unknown. I was afraid of the surgery. I had never had major surgery before. I was afraid of what my future might hold after the surgery. I didn’t know anybody who had been through this as a donor before. I was afraid that I would never see or hold my children and my grandchildren again.

I had known fear before. But this was different. In the past, others had put me in harms way and I had no choice but to deal with the fear. I had no other way out. This time, however, I had put myself into this situation, and the transplant team kept giving me the chance to back out at virtually every step in the process. And each time, up to the point where I was actually “the one,” it had been so easy to say, “I’m okay. Let’s keep going.” But now, here I was. And I was afraid.

And, as I said before, it had all started so innocently.

It had actually started almost 30 years earlier at George Washington University in Washington, D.C. I was in law school and Val [not her real name, to protect her privacy] was an undergraduate. We met. We became friends. We became lovers. We lived together. We argued. We broke up. We went our own ways. We lost contact. We married. We had children. We divorced. We lived our lives. Then God intervened.

Val and I met again by chance in my hometown, a ski resort in the mountains of northwest Colorado where I live and work, and where Val had bought a condominium for ski vacations with her son. Over ten years had passed since I had last seen Val. I had never met her son. Then one evening I walked into a restaurant for dinner with friends in my hometown only to hear someone say “Oh my God. Norm Townsend.” It was Val having dinner with her son and with friends. We visited very briefly and exchanged telephone numbers at her table. After all, what do you say to someone you had been so close to so long ago but whom you haven’t seen in years, and especially in front of a table of strangers?

Over the next 15 years we slowly renewed our friendship. We visited each time Val and her son came to town to ski. We talked by telephone often in between visits. We put the pain and anger behind us from years earlier (not easily or quickly), and we developed a different relationship. We became friends. Not best friends, but very good friends. We live too far apart. I value her friendship. She is a wonderful person. This is a much better relationship than our earlier youthful relationship. We focused on what drew us to each other in the first place. We nurtured that part of our friendship, and we avoided the stuff that had gotten in the way of a real friendship earlier.

Then came a telephone conversation in the Fall of 2001 when my ignorance ran smack into Val’s desperation. This call changed our lives forever!

Val hadn’t said anything in any of our conversations until then about her kidney failure. And then, when she called this time, I innocently asked, “How’s life?” She answered, “Do you really want to know?” and I said “Sure.” That was the beginning. She said her kidneys were failing, that she was approaching total renal failure and dialysis, and that her doctors had told her essentially “Find a donor or die.” Not immediately, of course, because her life could be prolonged by dialysis. But I already knew that dialysis was only a temporary solution, and not a very satisfactory one at that.

In my ignorance and my comfort of good health and happiness, I nonchalantly responded to Val’s bad news by saying, “Kidney failure. I have an extra one of those, don’t I? You can have one of mine.” Total ignorance and total inconsideration of Val’s desperate situation. I didn’t know of or fully appreciate her desperation. And she replied to my off-the-cuff remark by asking, “Are you serious?” Whoa! This question was the first to take my breath away. But, as I’ve already said, it wouldn’t be the last.

I had checked off the block on my driver’s license saying I would be an organ donor upon my death. I had even put my name on a list of potential bone marrow donors. But this was different. That was theoretical. This was reality.

And I replied to Val’s question if I was serious by saying, “Well, I think so. What do I have to do?” Val gave me the telephone number for the Transplant Coordinator at NIH, and the next Monday I gave her a call. She asked what my blood type is, and the first step in the process was taken. We matched, and I was then given the first chance to back out. It would not be the last.

I had always assumed that, when looking for a living kidney donor, the doctors take everybody who’s indicated a willingness to be considered, test them all essentially at the same time, and then take the best match and go from there. On the contrary, I learned that it’s not like that at all. Instead, the potential donors step up one at a time as they learn of the recipient’s predicament. Then, the potential donors metaphorically start up a staircase one after another. At each floor the potential donor is subjected to one or more physical or mental tests and, after the doctors assess the test results, the potential donor is told either you are or you are not a suitable donor.

If the potential donor passes that particular test, they’re told, “You’re still a suitable donor. Are you willing to keep going?” At any floor, the potential donor can drop out either because the particular test reveals that they’re not a suitable donor, or simply because the potential donor decides at that point for any reason that they’re not willing to keep going. If the donor passes the particular test and says they’re willing to keep going, they get back on the staircase and go up to the next floor for a different set of tests. And then again, if they pass, they’re told, “You’re still a suitable donor. Are you willing to keep going?”

Val had several friends on that metaphorical staircase ahead of me, and several other friends on the staircase behind me. One by one the folks on the staircase ahead of me dropped out for one reason or another. I was never told why, only that they had. And I kept going up the staircase, being subjected to a variety of test on each floor (each seemingly more intrusive than the last), and each time being told “You’re still a suitable donor. Are you willing to keep going?”

Until I was suddenly at the top of the staircase. There were no more tests. And the Transplant Coordinator stopped me in the hallway several days after the last tests (days that were spent I learned later analyzing all the test results) and she said, “You’re it. Are you still willing to do this?” She assured me again (as she and Val had on numerous earlier occasions) that I didn’t have to do this; that there were others still on that staircase behind me still being tested.

This was a weird point in the process because, unlike every other time that the question whether or not I was willing to keep going was put to me, on this occasion after posing the question, everybody backed away from me leaving me totally alone with the decision. My doctors (Val had her own team of doctors who I never met before the surgery), the nurses, the Transplant Coordinator, even Val backed away for fear of unduly pressuring me. (I learned later that Val was told that she shouldn’t even talk to me for fear of undue pressure.) Just when I needed to talk, everyone else in the process believed that they shouldn’t talk to me. I felt like a leper. It was a lonely feeling.

I asked for the night to think it over.

That was a very long sleepless night. I was scared to death. I cried a lot. I called my son. He was so very far away. I missed him so. I cried some more. I talked to God. I asked why she had put me in this situation. I asked what she had in store for the rest of my life. I thanked her for all that she has given me in my life.

I recognized then as I do now that I have been given so much, and that I have been asked so little in return. I am blessed in so many ways. And I finally realized that fear was not a good enough reason to say no. Every donor is afraid. I was not alone in that. And, if I said no, then one of Val’s other friends on the stairs behind me would be put in this situation. If not me, then who? But God had given me health and she had given me a renewed friendship with Val for a reason. And this was it. This was my chance to give back for all that I have been given.

So, the next morning I told Val first, and then I told the Transplant Coordinator, “Yes, I am still willing to do this.” So surgery was scheduled for the next morning, 7:00 a.m. on March 5, 2002. (Actually, it had already been scheduled long before for that day, but with the understanding that it would be cancelled if I failed the last tests or backed out.) Then I went back to Val’s home for the night.

That night was much easier for me but, as I learned that evening, it was much harder on Val. Val, several friends and I had dinner together at Val’s home in Washington, D.C., only miles from the NIH transplant center. Neither Val nor I had much of an appetite. Then, all the friends went home and Val, her boyfriend and I were alone. I needed to talk. Val needed to cry.

I told Val that this was my decision and that, whatever happened, I would never blame her. I told Val that I needed to do this because, despite how poorly I had treated her years earlier, she had let me back into her life and she had allowed me to be her friend again. I told Val that, once I give this kidney to her, it is hers to do with as she pleases. She owes me no explanations or apologies. Ever.

Val told me that, until that morning when I said “Yes,” she had prepared herself for the negative answer that she had received so many times before as one friend after another dropped out for one reason or another. She had gotten her hopes up so many times before that she wouldn’t allow herself to get her hopes up again. And then I said “Yes.” And then it was a reality for her too. And I learned that she too was afraid.

She was afraid to do the surgery, but she was more afraid not to do it. We cried. We hugged. We held each other until we were exhausted. Then we went to our own rooms where we waited for the sun to come up. And it did, as it always has, and as it hopefully always will.

We were at the hospital at 6:00 a.m. The whole ward was abuzz with activity. I was prepped and put on a gurney. My best friend’s wife Mary had agreed to stay with me in the hospital for the surgery and for as long thereafter as I needed. She would sleep on a small cot in my room at the hospital.

As it turns out, this was the very best decision that I made in the whole process, asking Mary to be with me. I will forever be grateful to Mary and to her husband (he stayed home with their 3 youngest children) for this. I don’t know how anybody can go through this without a Mary at his or her side. God again was taking care of me, and Mary was the Angel God sent to look out for me and to take care of me.

At my request, Mary and I had the day before been given a tour of the side-by-side operating rooms because I didn’t want to see it for the first time as I was wheeled in for surgery. So I was prepared for it when it happened. I recall talking to a couple of operating room nurses who I had met the day before, and I recall speaking briefly with the anesthesiologist who I had met earlier as well. And then I don’t remember anything until I awoke in the recovery room over 4 hours later. This part was easy.

Then I was wheeled back to my hospital room where, an hour or two later, a nurse told me that Val was back from surgery, and that she and our kidney were doing well. But, at that point, I was selfishly unconcerned with Val or with anybody else. I was totally focused on my own pain. It hurt like hell! Nobody had told me that it would hurt so badly. Nobody had prepared me for this.

But Mary, bless her heart, held me and caressed me and cared for me. Not that the doctors and nurses did not do their very best to comfort me, but they were far too busy. Mary was my Angel. The first night after surgery when my pain was at its peak, Mary would literally get in bed with me and hold me. I will love her forever for this act of friendship and compassion. When I introduced her to the new nurses who came on duty that night and the next day as my best friend’s wife, we raised some eyebrows on the ward. But we didn’t care. We did what we had to do to get through it.

And we did get through it. I stopped using any pain medications two days after surgery, and I haven’t used any since. It was interesting to watch. I went into the hospital totally healthy, and Val went into the hospital gravely ill. The day after surgery, I was a basket case. Val, on the other hand, was soon able to walk to my room (very slowly, mind you) and hold my hand. She was even able to eat a grilled cheese sandwich (which, as it turns out, was a mistake). Then we went the other direction.

My recovery was very quick, and Val went back to being gravely ill. Not from kidney failure (it started pumping piss the instant it was connected), but from the nasty meds the doctors were pumping into her tiny body to avoid rejection. From that point on, she suffered as I got well. But her color was so much better than the day before surgery. I could see immediately that she was better than before the surgery.

My stay in the hospital was prolonged by one day because I couldn’t pass gas or have a bowel movement (others have described the details of the surgery and recovery, so I’ll stick to other aspects of “my story”), and then because I developed a partially collapsed lung from laying on my back for several days (although I was up and walking the ward the day after surgery, and even went outside a few times before my discharge). They made me repeatedly suck deeply on a plastic apparatus, keeping a ball balanced on a stream of air. This forced fresh air into the depths of my lungs, opening them up and drying them out.

I will be forever grateful too to one of the nurses (Pam, I love you to this day) who, as the doctors were trying to convince me to take laxatives or other meds to cure these problems, told me in a whisper (probably for fear of being overheard by the doctors) that I had the right to refuse any medications or any treatment that I didn’t want. Nobody had told me this before. (The consent forms said that I had the right to “refuse treatment,” but I thought this meant I had the right to back out altogether, not that I had the right to refuse a pill if I wanted to.) It was incredibly empowering to know that and, much to the doctors’ dismay, I exercised this power telling them that I am confident that my body will do its own thing eventually. And it did. I needn’t get too graphic here, but my body did work as it was designed, and after 5 days in the hospital, I was discharged.

And my Angel Mary walked me out of the hospital and took me to her home where she continued to care for me. I spent a week with Mary and her husband and 3 youngest children near Charlottesville, Virginia recuperating, and then I returned to Washington, D.C. to Val’s home where I stayed for two days before flying back home to Colorado. Val was not out of the hospital yet, so it was somewhat lonely and melancholy in her home. I visited Val in the hospital a few times, and then I flew home.

The flight was uneventful. (I had never flown first-class before, so that was a treat.) I recuperated at home, and then, 5 weeks after surgery, I returned to work. At first, I got tired each afternoon, and had to take a nap. That lasted for only a couple of weeks, however, and then…. Nothing.

I feel absolutely no different now almost 5 months after surgery than I did before surgery. I can feel my incision now and again. Sometimes it itches. Sometimes it pulls or tugs. I occasionally feel a pain or a pull somewhere in my body that I probably felt and ignored before my surgery, but that now causes me to go “Huh. I wonder what that is.” Other than that, nothing.

Val is recovering. Our kidney is working like it is supposed to, and she is learning to tolerate the kidney and the meds. This weekend she has traveled to Florida to visit friends for the first time since our surgery, although she had to line up a nephrologist in the area to be on stand-by just in case anything happens. And life is good. For both of us. And that is good.

In hindsight, as has been discussed by others on the Bulletin Board, I was not provided with as much information up front as I should have received. Moreover, I was much too ignorant of all this to know all the questions I should have asked. And I have not heard a word from anybody at the hospital since I left.

As I have said, I was totally unprepared despite trying my very best to be fully informed and prepared. But, all things considered, and given how incredibly lucky I have been, it all went very smoothly. I would not hesitate to do it again (although I’ve run out of spare kidneys). Aside from having children and grandchildren, it was the most life-affirming thing I have ever done.

But another thing about this that nobody told me about or prepared me for is just how this experience has changed me. Forever. Nobody told me how the experience would always be so close to the surface of my consciousness. Not that I am consumed by, or preoccupied with it. On the contrary, life goes on now as before – in some ways even better than before – except that the experience is never far from my conscious mind. It takes only an itch or a tug at or near my incision, or the sight of the high school where my son attended and where Val’s son now attends, or the smell of a particular flower that I received as a get-well gift in the hospital for it all to come to the surface and occupy my consciousness again.

This is not a bad thing. In fact, it’s a good thing. I believe I am a better person for the experience. I am happy that I did it, and I would be happy to talk to or exchange email messages with anybody considering this step.

Friends and acquaintances upon learning of my experience have said things like, “you’re a saint” or “you’re a hero.” I totally reject these labels. Thousands of folks have done what I did. I don’t want folks considering doing this to feel that they have to be “a saint” or “a hero” to do this. That is putting the bar much too high, and may cause some to decide that they can’t do this because they’re not “a saint” or “a hero.” I know that I am not. We are just common folks who have been faced with a difficult decision, and who have done what they felt they had to do for a family member, or for a friend, or even for a total stranger. Thousands have gone before, and I hope that thousands will come after me.

There is so much more that I could say about the experience, but this has gotten way to long already. And I have just scratched the surface. What an experience! I only wish that everybody’s experience as an organ donor could be as easy and as rewarding as mine. (I feel for those whose pain and suffering I have read about on the Bulletin Board. I am sorry your experiences were bad, and I hope your suffering ends soon.)

As I thought would be the case when I made my decision to go forward with the surgery, a few days of pain and a couple months of discomfort are a very small price to pay for perhaps years of quality of life for Val and for her son. I couldn’t be happier for them. I hope to see them again soon.

This is my story, and I’m sticking to it.

Norm Townsend

Steamboat Springs, Colorado