Sunday, September 20, 2009

A Journey's Full Circle

Three months ago I donated my kidney in what was the largest kidney domino swap ever accomplished. I gave my kidney in hopes that my friend and co-worker, Robert, could get a kidney and resume a healthy life free of the torture of dialysis.

This week marked an end of sorts in this journey. On Monday, Robert returned to work. He is healthy and happy. His body is showing no signs of rejecting the kidney he received from an anonymous donor in Oklahoma. I almost burst with joy whenever I see him around the Hospital.

Last week, I had the honor to meet the recipient of my kidney who lives outside St. Louis. It wasn't important for me to meet her - it was enough to know that she was healthy. But meeting her brought closure that I didn't know I wanted. She has a beautiful story that I may feel comfortable sharing with her permission later. She is a vibrant, beautiful woman who said that three months ago she spent her days sleeping. She could not even cook, clean house or shop for her family. Now she happily can do all of those things.

Everyday someone asks me how it feels to have gone through this journey. I have not found the right words yet and maybe I never will. I came across a quote from Martin Luther King, Jr that describes my feelings beautifully so I will use it until I find my own way to express it.

"Occasionally in life there are those moments of unutterable fulfillment which cannot be completely explained by those symbols called words. Their meanings can only be articulated by the inaudible language of the heart."

The journey has changed me. I wake up every morning feeling different - not physically different, but spiritually and emotionally different. It may sound like a cliche, but I feel more alive, unburdened and lighter (though I did gain about 7 pounds). I feel very confident of my place in the world and I want to experience everything life has to offer. The most inexplicable change I have experienced is that I have lost my fear - I don't seem to be afraid of anything or anyone. I suppose that may pass, but for now I enjoy my fearlessness. At the same time I have lost some of my patience and tolerance for what I see as unfairness and complaints by others about minor infractions, discomforts or inconveniences. But when all is said and done, I think I am a better person.

This portion of my life has come full circle. On Friday afternoon around 4:00, Robert stopped by my office with a big bunch of flowers for me. My heart nearly burst again. I asked him how his first week back had been and we shared how we each were feeling. As I walked him out into that same hallway where our fateful conversation had taken place a couple of years ago, I asked him if there was anything he needed, was there anything I could do for him. He turned and smiled, "No, I'm fine. There is nothing I need."

Tuesday, August 4, 2009


I planned to write a blog at least once a week and then I went back to work. What a whirlwind that has been! I was given six weeks of leave, but felt fine after four weeks and returned to work then. While I felt fine, I did tire more easily and found myself going to bed early. Then the days got back to normal and I just ran out of time to blog. But I am back.

It has been six full weeks now since my surgery and I feel great. I do not feel like I ever had surgery. I said to a physician in the hall yesterday that it just didn't seem right that it was so easy. She said, "you didn't suffer enough." That's right. I thought I would have suffered at least little. Don't get me wrong, I am happy and grateful that it was so effortless.

On my last day at the beach before I returned to work, I got up early to take one last walk on the beach. If you get out early enough, you feel you have the whole world to yourself. The Gulf is usually calm with the waves lapping in a slow steady rhythm. The water is a beautiful shade of green that is only seen in nature. Since I was nearing the end of my official recovery period, I was feeling particularly philosophical.

I am strong now, so it was a nice long walk. I thought about the experience I had just been through and how it had impacted me. I felt very joyful having finally done something I had wanted to do for so long.

When I turned to head back, I could clearly see my own footprints in the sand. I stopped to watch the inevitable process I knew was coming. My recent steps were distinct. When the first wave hit, I could still see them clearly, but they were fading. The next wave left them faintly visible. By the time the third wave washed over my footprints, they were erased from all memory.

As I walked toward home, I thought about the impressions we make in life. We have an opportunity to make a clear and distinct imprint on the people we come in direct contact with - our siblings, friends, neighbors, co-workers. The next generation of relationships is like my footprints after the first wave - we make an impression but it is not as deep. By the time we are three degrees removed, we are a faded memory at best.

The first time I saw the Tibetan Buddhist monks painstakingly make an intricate colored sand mandala only to watch them sweep it into an urn and pour it into a flowing stream, I did not understand their lesson of impermanence. My walk on the beach that last day reminded me of that lesson.

We do not live forever. So the mark we leave is not in things, but rather in the deeds we do and the lives we touch. And for most of us even our best will be unknown or unseen in three generations removed. So maybe our intention should be to do the best we can anyway with those we touch directly. Maybe they will then "pay it forward" with kind words and deeds to those they touch. We can start a wave of words and deeds that will ripple far beyond our touch. Maybe then our footprints will make a deeper and longer imprint in the world.

Sunday, July 12, 2009

Sunday at the Beach

Today I took the longest walk since my surgery almost three weeks ago. I am at my home in Florida spending what I expect is my last week of recuperation. I am spending the week on the beach at Seagrove Beach.

I walked all the way to the next warning flag. These flags are place on the beach about a half mile apart to warn swimmers of the water conditions. It uses a simple red, yellow, green system. Today's flags were yellow and my walk was about a mile round trip.

In the winter when I come here, I can make this same walk and see no more than a handful of people. Mostly, they are locals walking or fishing. But today is Sunday, July 12 - the height of vacation season - and the beach is packed. There is not a ten yard stretch that doesn't have people on it. I used to be annoyed by this invasion of people driving cars with tags from Alabama, Tennessee and Georgia, but I have come to accept it. Sometimes, like today, I actually enjoy it.

The beach sounds were like music. The waves keeping the beat with children laughing and squealing with delight. And everywhere the beautiful Southern drawl. Smiling families were taking pictures that will no doubt be on this year's Christmas card. Many appeared to be baby's first trip to the beach pictures as well. Oh my goodness, bikinis are still itsy-bitsy.

On the walk back, I counted nearly 50 children (and a couple of adults) building sand castles. Two kids were being buried alive. (With five brothers and sisters, I remember this activity well. We also made hundreds of "frog houses" constructed by covering your feet in a mound of sand and then pulling your feet out without it collapsing. It was more like an igloo and there were no frogs around, but it entertained us for many lazy hours.) The sand castles today ranged from the primitive to the sophisticated. I saw the dry sand method, the damp sand method and the sand-water drizzle method. Most castles had the requisite moat. I noticed that some kids build the moat first and others wait until the castle is finished. The younger kids just dig a giant hole, sit in it and build a wall around themselves. Others seemed to be trying to dig to China. I didn't want to burst their bubble by telling them that I had tried that unsuccessfully for years.

It appeared to be the first day of vacation for many of the families on the beach today. I had a few hints that it was their first day. First hint, most vacation rentals here are Saturday to Saturday with Sunday being their first full day on the beach. Second, no sunburns! People always underestimate the intensity of the Florida sun off this white sand. Even with all the warnings to reapply sunscreen, many will pay the price tomorrow. I also noticed that all the readers were on the first few pages of their new books. And, my last hint, little brothers were still playing with and listening to their older sisters. I only heard one boy say to a slightly taller girl with the same color eyes and hair, "You aren't my boss!"

So I enjoyed my long walk today and I look forward to returning tomorrow. No matter how long I live away, this will always be home to me. Tomorrow, the sand castles will all be swept away ready to be built again. Cheeks and shoulders will be red. And the sugar white sand and the emerald green water will be here to welcome us all back.

Friday, July 10, 2009

My Kidney Lives and Pees in St. Louis

My kidney lives and pees in St. Louis. Yes, that is my quote that was picked up by TV and newspapers at the press conference last week. Of all the great information shared that day, that was the sound bite the press was waiting for. Later, as VP of HR, I thought I might have to issue a reprimand to myself for saying "pee" in public. But then I remembered that I had just written a blog about my bowel movements. I guess I will let this transgression pass as well.

The press conference was held at Johns Hopkins to announce the historic eight way domino kidney swap, the largest every done. The star was Dr. Montgomery along with Mr. and Ms. Brinkman, newlyweds who were recipient and donor, respectively, in the swap. I also had the privilege to be one of the eight donors who gave our kidneys to eight recipients over a three week period at four hospitals in four states. Until the last pair of surgeries was complete this week, we were asked not to talk about it.

Now, I can shout to the rooftops. MY KIDNEY LIVES AND PEES IN ST. LOUIS!! My kidney was flown from Baltimore to St. Louis and transplanted into an energetic 60 year old woman. Her daughter in turn donated her kidney as the last donation in the amazing chain. This last kidney went to the still anonymous recipient who was the person in the chain who had no live donor and who would have died without this transplant.

When I started this process, I planned to donate my kidney to my co-worker, Robert. I never imagined that I would be a part of something so large and remarkable.

I was donor #7. The chain was made up of ten women and six men. Seven of the people were in need of a transplant and they each had someone willing to donate a kidney to them. However, all seven pairs were incompatible due to blood or tissue type. Donor #1 is the key to it all. Donor #1 was Thomas Koontz, a Virginia gentleman who wanted to give back something to honor his daughter's cure from brain cancer. He willingly gave his kidney to anyone who needed it. I am in awe of the generosity of such an altruistic gift.

He had no idea how big his gift would become. Like me, I suspect he thought that one person would benefit from his gift. Instead,Mr. Koontz's kidney went to Ms. Wolstenholme; Ms. Wolstenholme's sister gave her kidney to Mr. Brinkman; Mr. Brinkman's wife gave her kidney to Mr. Bruce; Mr. Bruce's wife sent her kidney to Detroit to Ms. Johanson; (Are you confused yet? We are only half way through.) Ms. Johanson's friend sent his kidney to Oklahoma City to an anonymous recipient; the anonymous donor there sent a kidney back to Baltimore for my co-worker Robert; my kidney went to St. Louis for Ms. Leffler; Ms. Leffler's daughter then gave her kidney for the final recipient who had no donor. This ended the chain.

Brilliant! Simply brilliant!

However, the complexity of the logistics is mind-boggling. Just figuring out the mix and match of donors and recipients, then coordinating sixteen surgeries in four hospitals is hard to imagine. Not to mention there were kidneys flying all over the place. Dr. Montgomery said, " The airspace around Baltimore was full of kidneys."

At the press conference that day, I wore a Hopkins blue dress and an organ donation green scarf. No one saw the symbolism, but it was meant only for me anyway. I have never been more proud to be a part of Johns Hopkins Medicine than I was that day.

While most of the sixteen people involved do not know each other and may never meet, we are forever linked by this amazing event. When I wake each morning I will smile knowing that Robert and seven others have new kidneys, but I will laugh out loud at the sheer wonder that my kidney lives and pees in St. Louis.

Monday, July 6, 2009

The Post-surgical Therapeutic Value of Pajamas

Today is D-Day +14. I donated my kidney to a co-worker two weeks ago today and I feel fantastic. I sit around all day resting, reading and visiting with friends. I take regular short walks and longer walks a couple times a day. Until today, I have been out of my pajamas exactly 3 times - to go to my follow-up appointment, a celebratory dinner with friends, and to visit my co-worker/recipient who is still in the hospital. I would have worn them to the dinner, but I didn't want to embarrass my friends.

I have often heard people talk about the beauty of leisurely days spent in their PJs. One friend says that she has one weekend day every couple of weeks when she makes herself stay in her PJs until at least noon. They use the time to read and talk, but mostly to quietly and slowly do nothing. They say that it is restorative.

I have never appreciated the true value of a comfortable pair of pajamas. I am one of those people who pops out of bed and gets dressed ready for the day. I am no good at sitting around and never in PJs. So when Sharon, the discharge nurse, told me that I would be in the hospital for a couple of days and then ordered me to rest at home for a couple of weeks, I headed to Target. I selected a couple pair of snazzy cotton drawstring pants (expecting a tender belly) and a couple sleep shirts in complementary colors. My best girlfriends brought me a couple of very hip sets from Anthropologie.

I think I did pretty well in my selections for a PJ novice. After I was home a couple of days, I apologized to a friend who was taking me for a walk that I looked so sloppy. He said, "I think you look adorable in your tie-dyed baggy pants." Adorable? I haven't been adorable since the second grade at Lula J. Edge Elementary School in Niceville, Florida. I few days later, a genius designer (truly genius) was sitting with me and said, "Did that top and bottom come together or did you do that?" I looked at my orange and yellow plaid bottoms and my turquoise top, stuck out my chin and said, "I put them together myself." "Hmmm..." he said, "I wouldn't have thought of that combination, but somehow it works."

So here it is 14 days after surgery and I am still in my pajamas. Day in and day out, I wear my PJs. I have stopped thinking about regular clothes. My best doctor friend, Kristy, dared me to go to the local ice cream shop in my PJs. Don't ever dare me. I had the peanut butter cup delight. I have friends who come everyday to take long walks with me - I call them my dog-walkers - we walk all over the Canton waterfront in my pajamas. It is shocking.

A few days ago I got up and decided it was time to get back to real clothes. I was greeted by my niece, Katherine, who is living with me. She is a fourth year medical student at the University of Miami spending a year here getting a Masters of Public Health from Hopkins. She asked me why I was putting on clothes and I said I felt like I was committing one of the seven deadly sins - sloth. She said, "Aunt Pam, don't you know that pajamas have a post-surgical therapeutic value. Clothes restrict your belly and will put pressure on your incisions. I recommend you put back on your pajamas." Eureka! Bingo! Jackpot! Permission from an almost-doctor to stay in my PJs!

After 14 days, I now understand the allure of staying in your PJs all day. PJs send a message to your brain that you are in relax mode. No need to run errands or clean the closet or vacuum the floor. Just sit down and read or talk or write a letter. It is restorative.

I am going to suggest that the transplant center modify their discharge instructions. If they seriously want donors to rest and recuperate, the instructions could state: WEAR YOUR MOST COMFORTABLE PAJAMAS ALL DAY UNTIL YOU ARE READY TO RESUME NORMAL ACTIVITIES.

I guess I should start weaning myself off my PJs starting tomorrow.

Tuesday, June 30, 2009

A Diversity of Blessings

Within the span of a few days before and since my surgery, I received an overwhelming number of well-wishes - far more than I ever imagined. I have recorded each one of them and will reflect on them over the days of recovery to come. Each wish and blessing will be cherished and there are three that particularly made me pause to think.

A few days before my surgery, two different friends - the transplant follow-up nurse, Sharon, and my doesn't-know-how-pretty-she-is best friend, Judy, both sent me a saying from the Talmud, the Jewish book of teachings. Judy and Sharon have never met, but each spoke of the meaningfulness of the gift I was giving and the quote they both shared was "if you save a single life, it is as if you have saved the whole world." I truly appreciated the sentiment, but felt they were overstating the significance.

The night before surgery I received a number of heartfelt e-mails that helped me fall asleep feeling especially well loved and cared for. One of them came from Nancy. I met Nancy through her brother, Bob, who serves on the Community Mediation board with me. Their father was in the hospital with a terminal illness last year. After my first visit to his room, I fell in love with him. He reminded me so much of my own father and I visited him until we lost him at home a few months later. Nancy sent me a beautiful note that included the Prayer of Saint Francis of Assisi. I have omitted portions, but it goes in part as follows:

Lord, make me an instrument of Thy peace;
where there is hatred, let me sow love; ...
... and where there is sadness, joy.
Grant that I may not so much seek to be consoled as to console;
to be understood, as to understand;
to be loved, as to love;
for it is in giving that we receive ...

Nancy highlighted that last line. I had heard this last line many times in my life, but usually as a child when you grudgingly gave a gift you really wanted to keep for yourself.

The first morning after surgery that I woke up at home in my own bed, the reality of it all hit me for the first time. I lay there and thought, "They actually took my kidney out of my body and it lives in another human being now. And I feel perfectly normal just like waking up any other day." It felt other-worldly. I don't know that I have the words to describe it but I will never forget it. A little while later I reached for my blackberry and saw that an overnight email had come from my friend, Hamed, in the United Arab Emirates. Hamed told me that he and his family were talking about my experience and discussing organ donation as a family. That made me feel so wonderful. Then he too went on to talk about my gift and shared with me a saying from the Prophet Mohammad - "You will not believe before or until you wish for your fellow human being and neighbor what you wish for yourself."

I am so fortunate (dare I say blessed?) to have such a wonderful diversity of friends who care enough to share their blessings with me. But I was mostly struck by the fact that these three different religious traditions all hold as basic tenents the importance of giving to others and treating others as we treat ourselves. I am sure that my sister, Sarah, who teaches world religions could give me teachings from the other great religious traditions that are along the same thought.

We have heard all our lives - it is better to give than to receive. I think we all understand this saying intellectually and try to practice it, but do we really believe it? Well, I can tell you beyond a shadow of a doubt that it is true.

I don't know that I have saved the world as the Talmud suggests or have given my fellow being what I wished for myself as the Prophet Mohammad said but I can tell you that I have received back in a few short days far more than my kidney could ever have been worth. As Saint Francis said it is through this giving that I have been the one who has received immeasurable blessings. Thank you to everyone who has reached out to me in so many ways so far during this journey.

Friday, June 26, 2009

Guest Blog: The Gift of Life

Guest Blogger: Jessica Traskey, previous Johns Hopkins patient & a networking colleague of Pamela Paulk

There are few incidents in life which can give you instantaneous goosebumps.

Pamela is a member of the board for a nonprofit at which I work in Baltimore. She has served for a number of years and it was not until awhile ago that I stopped her after one of our meetings. I wanted to let her know how happy I was with the excellent care and fast treatment I was getting from doctors at Johns Hopkins.
I have had a kidney transplant.

I will not forget the brief exchange that we had at that time. I explained my situation and history, Pamela appeared in awe, and immediately said something along the lines of, “Well should you ever need another let me know.” There was something in her delivery of that sentence that I believed.

Time moved on, and at a board meeting in September last year, she beckoned me to a corner of the room and said, “I have some news to tell you.” Then she announced with a light in her eye that she had made the decision to donate one of her kidneys and that the process was in the works.

Her telling me this gave me the instant goosebumps and, amazing even myself, I was filled with tears. I felt completely overwhelmed, in a positive way. It reminded me of the life-changing changes that someone was about to experience. It reminded me that for someone an end was coming to many complications. It reminded me of the second opportunity of life that someone was to be given.

Jessica's Story
We can survive on one kidney. I do, and have been surviving on a transplanted kidney for 24 years. Yes, I as a recipient take medication daily, and suffer some minor hurdles now – which are closely monitored – mainly due to the two decades of taking the immune suppressant (anti-rejection) drugs. Yet I will be first to holler from the rooftops that life now compared to pre-transplant days is so much better, and at last leaps and bounds away from the illness and weakness that preceded the life-changing surgery.

The Diagnosis

I was two and a half when I first showed signs of repetitive illness, which largely came in the form of excruciating bladder infections. There were years of appointments and visits to and from local hospitals in southwest England, which was home. And, it wasn’t until a family visit to Baltimore in 1981 to spend an Easter holiday with my father's family that I was struck with an infection again. As always, they would hit in the middle of the night, and my parents and brother became all too familiar with the cries of pain that would wake them.

I was taken to Hopkins Hospital. Over a two-week in-patient stay the hospital did every possible test under the sun. The Hopkins doctors did not know me, my history or my insides from Adam, and under the superb care of a Dr. Robert Jeffs (who died in the last year) the picture was clear to him and his team. There was no doubt about it; my kidneys would indeed fail in time and I would need a kidney transplant. There was a double whammy, though: my bladder was causing dramatic reflux and infection, and so would need reconstructive work before I could receive a transplant.

On my return to England I was sent to Guy’s Hospital in London, a high flying city (training) hospital, which seemed leagues ahead of the rural town hospitals that we had been used to nearer home in Dorset. I had excellent pediatric care at Guy’s. In time I was under the care of a urologist, Tony Mundy. He made clear what he wanted to do, and that I would be the first pediatric patient in Europe to have this particular bladder reconstruction, to which a transplanted kidney could be hooked up at a later date. In 1984, my bladder was partially reconstructed from part of my cecum. I was 12 years old. The recovery was long and there was the added difficulty of having to learn to catheterize.

It was in February 1985 that my kidneys finally packed up and I was put on hemodialysis. My mother and I had to live in London five days a week, while my father and brother remained in Dorset – two and a half hours away by train. It was an awful strain all round, although I am sure that (at 12) I was oblivious to their own dealings with the situation.

Brother & Sister

A kidney became available for me in August 1985. I had gone on a ‘Dialysis Holiday’ with the pediatric unit, my parents had been ‘sent away’ for a break of their own and were in France, and I think my brother was staying with friends.

There were 12 of us dialysis children on the holiday with a number of nurses. We were in a caravan park on the Kent coast, and would get the train up to London every other evening for dialysis through the night before, and returning to the park the following morning to get back to our fun fair, beach, and crazy golf-filled holiday.

Over the first few days I think four children were called back to London for kidneys. It was an unreal thing because I just remember that we, as children, were elated for our fellow dialysis buddies. They were being called back to Guy's to get their kidneys. A couple more days passed, and another two were called. By then the rest of us were wondering, “Who’ll be next?”

Then within a few hours a boy called James and I were called – matches had been found. It was an extraordinary time, and even the nurses and doctors were amazed by the sudden availability of donor kidneys that month. It was unusual and rare. James and I were accompanied back to London on the train by a nurse, my parents were called back from France, and James and I were reunited with our parents prior to the surgery due the following morning.

Much is a blur, yet some memories are as fresh as yesterday. James and I became ”kidney” brother and sister. We both had a kidney from the same cadaver - in the 1980s receiving a kidney from a live donor was, I think, very rare - and through surgery and recovery we were toe to toe in ICU rooms; our bond seemed destined to last forever. But it was a tough few weeks following. My kidney needed a jump start with some dialysis, and I was still getting bladder infections. James, who had other complications, unfortunately died of septicemia. It was an awful time, and very scary for a 12-year-old.

New Life

I am a kidney transplant patient. I was fortunate to receive a kidney. The donor was a young man, — a son, a brother, a grandchild — who was killed in a motorcycle accident. His family made the decision to donate so that I and others could live. I owe it to that family to look after this kidney for as long and as best I can.

To receive a live donation is also a staggering privilege and honor. That someone makes the decision to give a part of themselves so that another can be free of debilitating illness, a life led by machines, and separation from family and friends, is an almost incomprehensible gift.

Now, nearly 24 years on, I’m living in the U.S. and leading a productive life, thanks to that gift and to the doctors at Hopkins and elsewhere who monitor my progress.

The Gift of Life

Pamela’s decision and her journey really begins this week. She will be giving someone a second chance at life, and that person will have the very special honor of saying that they know their donor. Above all, may others understand and be inspired by this extraordinary, selfless gift of life.