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.

Thursday, June 25, 2009

TMI - Too Much Information

I have worked my whole career in and around hospitals and doctors. We administrators joke affectionately about how nurses talk about bodily functions like we talk about spreadsheets. Very matter-of-factly, no sugar-coating.

Early the first morning (Tuesday, Donate Day +1) the transplant fellow checked my dressings and then she listened for bowel sounds. Hmmm? I wonder why she cares about my bowels? She knows they took my kidney, right?

After breakfast, I took a lap around the unit and came back to sit in a chair. The nurse came in and said I was looking good and then "Are you passing any gas yet?" Passing gas? I sound like a motor boat. It was so embarrassing. I asked Mack to talk real loudly when I had visitors so I could time my "episodes" to coincide with his talking. If I looked in pain, it wasn't pain - rather it was his queue to say something - anything. And say it now! I proudly reported my progress to the nurse. From her pleased expression, I knew I had passed the test - no pun intended.

Early the second morning (Wednesday, D+2) the fellow visited me again, removed the dressings and I saw my amazingly tiny incisions for the first time. As she again listened to my bowels, she said, "Have you had a bowel movement yet?" Wait a minute. Are you upping the ante? You didn't tell me I had to do that! I haven't eaten solid food since Saturday! I think my exact words were, "It ain't happening." I think I begged her to not make that a prerequisite of discharge. She said, "Well, we'll see how you do today." I was left unsure if I had to pass this new test before discharge.

Shortly after shift change, my new nurse came in and boldly asked, "Have you had a bowel movement yet?" OK enough already! What's up with the bowel movement?

She patiently explained that anesthesia slows your bowel functions and sometimes it takes a while for them to "wake" back up. They want to make sure everything is working again before I go home. She explained that getting constipated could be a very bad thing. Hello! You don't have to tell me that twice. I have four incisions in my belly.

When Mack and my sweetest best friend, Vicki, started texting each other about my "number 2" I knew it was time to take action. I asked for a peanut butter and jelly sandwich (purely psychological) and walked up and down the hallway several times. Late in the afternoon, I asked Mack to guard the door and say I was napping if anyone came to visit. I emerged a little while later and gave my nurse two thumbs up. Shortly after that I was on my way home. I guess I had successfully passed all their discharge criteria.

Thanks to the great transplant fellow and all the staff on Marburg 2. You made my stay very easy and pleasant despite the requirement to provide waaaay too much information about my bodily functions. Want to see a really cool spreadsheet?

Wednesday, June 24, 2009

Milk of Amnesia

There is a drug that anesthesiologists can give you that makes you forget all the unpleasant activity around the surgery. You are awake and able to respond and cooperate, but you don't remember a thing. If you have had it, it is pretty cool. It is a white, milky fluid and one of my wonderful doctor friends, Connie, told me they like to call it Milk of Amnesia.

The last thing I remember was the nurses unlocking the wheels on my stretcher and saying, "Here we go to the OR." According to Merrie, I was wide awake just talking up a storm. I like to talk. I apparently moved myself from the stretcher to the operating table and cooperated with all their instructions while bombarding them with questions of my own. Happily, I don't remember a thing!

The next thing I remember is a vague recollection of people coming and going from the recovery room. To me, only a second had passed, but it was really about 4 hours, I think. I have visions of Mack and Chris and Gail and Carol. I think I remember Greg and Pickle, too. My best doctor friend, Kristy, stood at the foot of my bed for a long time and then said, "She won't remember any of this. I'll be back in a little while."

I had no pain and no nausea (thanks Anethesiology, Merrie and Jeff). All I wanted to do was sleep a little longer.

Finally, I was ready to go to my room. I had two lovely ladies transporting me. When we got to the elevators I asked them if Robert was in surgery yet. They said his surgery was a little delayed and he was still sitting in the pre-op area. When I asked if I could see him, they did a quick u-turn and headed back. Everyone along the way just stared at us with quizzical looks wondering why we were coming back.

They pushed my stretcher in to the room where he was and I met his wife for the first time. He looked so happy. I think he was relieved to see me safe and well. We had a brief chat and I could feel how eager he was to see this day finally come.

I would not have traded that u-turn for anything. I am also glad that the Milk of Amnesia had worn off so that I can hold that memory forever.

Sunday, June 21, 2009

Monday, Monday ...

In about eight hours I am having a nephrectomy. I am voluntarily having my kidney removed to donate to someone else.

WHAT!? They are going to poke holes in my belly, blow it up with air and pull my kidney out through a little slit. I MUST BE INSANE!! WHAT WAS I THINKING??

Last week my old best friend, Mindi, and I went to dinner. I told her that I didn't understand why everyone was making such a big deal. It couldn't be worse than a hysterectomy or a C-section. My kidney is only about the size of my fist and that is much smaller than a baby. Mindi, in her dry way, said, "And just when have you had a hysterectomy or a baby?" I admitted that I had had neither. So she said, "So, Pamela, you have no idea what you are talking about."

My mother used to say that all the Paulk kids had the unique ability to speak with great authority about subjects we know absolutely nothing about. Well, except my older brother, Keith, who actually does know something about everything. We have yet to stump him.

Mindi is right. I don't know what donating a kidney is like, but the staff have done a great of preparing me. I go in tomorrow morning at 5:30 a.m. My brother, Mack, my nephew, Chris and two of my best friends, Gail (new best friend) and Carol (best friend from work) will be there. They will sit watch in the waiting room for the next several hours.

Merrie from Anesthesiology kindly called me yesterday to talk about anesthesia. When I explained that I am claustrophobic, she said she would make sure I was warm and comfortable and that nothing would be put over my face until I was asleep. That was incredibly reassuring. She even said she could put me to sleep in a comfortable sitting position. She did warn me that my side would get stretched a lot with my arm over my head, so not to be alarmed. Hooray, mentor Kathy, for encouraging me to stretch.

I will wake up about four hours later that will feel like two seconds with one less kidney. I will stay in the hospital for a couple days and go home to recuperate. My recovery will take 4 - 6 weeks. I measure full recovery when I can get back to the gym and my pilates and yoga classes. They say a full six weeks before I am allowed to do that. I have a wonderful support system of family and friends who have volunteered to check on me, walk with me and feed me.

Thanks to everyone for all their notes and words of support. It has already been an extraordinary journey and it really hasn't even started yet.

I am ready for tomorrow - Monday.

Saturday, June 20, 2009

I Know She Needed Fish

We lost our Dad early. I am the fourth of six kids and I was 17 when Dad died at the age of 56 - heart disease. Before he got sick he was full of energy and loved life. He and Mom loved nothing more than their six kids and he shamelessly bragged about us to anyone who would listen. But their love for fishing was a close second. We ate what they caught.

They went fishing every chance they got and if Mom couldn't go, one of us kids would go along with Dad. I did my share of fishing, but my younger brother, David, loved it the most and he and Dad spent many hours fishing together. David has Dad's same joie de vivre and when he walks into a room the volume goes up and people smile. David shared a story with me a few years ago that stuck with me.

He and Dad had been fishing when David was probably 9 or 10 and had a good catch (probably bass or brem). Dad drove a 1969 Volkswagen automatic stickshift - I learned to drive in that car. On the way home, Dad pulled off the road in front of a very modest house. Hearing a car drive up, a woman walk out on the porch. Dad yelled, "Get a pan. I've got some fish for you." She said, "I can't pay you for them." "No, I don't want money. I'm giving them to you. We caught more than we can eat."

When Dad returned to the car David said, "Dad, how do you know that woman?" He replied, "I don't, son, but I know she needed fish."

If you don't believe in legacy, here is the rest of the story. Years later, David pulled up to a modest house on the way home from fishing and gave an elderly woman some fish. She said, "You know, years ago a man in a Volkswagon used to stop every now and then and give me fish. I remember that there always a young boy with him." David's answer, "I was that boy."

People ask me why I would give my kidney to someone I am not related to. I just don't have a good answer. I just know he needed a kidney.

Though he has been gone 38 years next week, rarely a day goes by that I am not reminded of him in some way. He never knew me as an adult, but I hope he would be proud of the woman I have become.

Happy Father's Day. I wish you were here.

Friday, June 19, 2009

Starting the Conversation

As I walked across the Nelson-Phipps bridge this morning I could see a coworker and her son walking into the hospital entrance. I have worked with her for 9 years and have known her son since he was in elementary school. He is now taking college classes and works full-time here as well. He is a handsome young man with a beautiful spirit just like his mom.

She and I arrive on our floor at about the same time. She said, "Hey, funny to run into you. We were just talking about you. On the drive in this morning, my son said that he had read your blog last night and he asked me, 'Mom, could you do that? Could you give someone your kidney?'"

I don't know how the conversation ended, but I know that it started. Here is a young man who likely never would have had a conversation with this mother or anyone about organ donation. Now he has thought about it - thought about it enough to raise the question with his mother. A seed has been planted. Organ donation is now something real to him. That can never be erased.

It would be great if all families had this conversation. Signing your donor card and having it designated on your license is the first step. But make sure your loved ones know your wishes firsthand. If a tragedy strikes and your organs are available, even if you have that little heart on your driver's licence, the hospital will consider the wishes of your family. At their time of lose, this may be a painful decision. If you have told them your wishes, then just maybe they can find some comfort that your wish was to help someone else.

Later today, someone pulled out their wallet, pointed to the heart on their driver's license and asked me, "This does mean that if something happens to me, they will use my organs, right?" I said, "It tells the healthcare providers that that is your wish. Please go home tonight and tell your family so that they know it, too."

It may be an awkward conversation at first and I am not sure how to start it, but please start the conversation somewhere, anywhere. And please sign a donor card if you have not already.

Thursday, June 18, 2009

My Inspiration

Is it a coincidence that I want to be a donor and I have two friends who have kidney transplants? Probably not. More than likely their friendship planted the seed in my mind without me or them even knowing that the seed was being planted.

My old best friend - I also have a new best friend, a best friend at work, a best friend at the gym, a best guy friend - you get the idea. Anyway, my old best friend moved to Baltimore a few years ago with her husband and they called to get a recommendation for new doctors. Specifically, he needed a nephrologist. That was when I learned he had a transplant. He had a rare condition as a child that caused both kidneys to stop functioning. Luckily, both his parents were a match and at the age of 21, he received his dad's kidney. You would never know that he has a transplant. Hmmmm... people with transplants look and act just like people without transplants.

I am on the board of a local non-profit that works on policy, legislation and programs to help remove barriers for lower wage and lower skill workers to open avenues for them to get and keep jobs with good pay and benefits. (I am doing them a great disservice by not explaining further, but it is Donate Day - 4 and I can only write so much.) I became close with one of the staff. I am not sure when, but somewhere along the way she told me that she had a kidney transplant. I never asked her the details, but I know that she received a cadaveric kidney when she was only 12 years old.

He is 43 and she is 36 now. They both have transplants that are over 20 years old. Without these kidneys, they would have died tragically young.

They are my inspiration. Whenever I get the least bit uneasy, I think of them. I felt the need to reach out to both of them this week when I needed a little dose of reassurance. They are the living proof that kidney donation gives back life. I value them in my life and know my life and others' lives would be less complete without them in it.

Everyone Needs a Mentor

Shortly after I volunteered to be a donor, the Transplant Office at Hopkins asked me if I wanted a mentor. I know and promote the value of mentoring in career development, so it sounded like a great idea. The coordinator said they would try to connect me with someone who I could relate to. Well, they weren't kidding!

In a few days they called me and gave me her number. They said she was about my age and had donated her kidney to her husband 3 - 4 years ago. The following Sunday I called the number they gave me....

"Hi, this is Pamela, Hopkins Transplant Office gave me your number as my mentor. I am considering donating a kidney and was wondering if we could talk."

In a loud, distant voice I hear. "Oh, Hi! I was expecting your call! But I am in Snow Mass! Right now I am at the top of the run about to come down! Can I call you when I get to the bottom!?"

The coordinator had hit a home run. Here was a woman full of life who had just donated a kidney. Her response was better than any brochure I could read.

We did talk when she got back to the lodge. She gave me some great practical advice including to do as much side stretching as possible before the surgery. She said she did not know why but her mentor (her uncle if my recollection is correct) had warned her that you would be very sore because your arm is over your head for most of the operation. She said she had not stretched as much as she should have and was definitely sore.

She said to walk as much as I can after the surgery even if it is only around my apartment. In a week, she could walk a block. She reminded that for the first few weeks I would have good and bad days and not to get discouraged. She emphasized over and over that my life would not be harmed in the least after the recovery period. And she is living proof of that.

I called her again last night to tell her I had a date scheduled for this Monday. First thing she said was, "Have you been stretching." I have! I got lots of encouragement and support and repeated cautions about following doctors orders to rest from her. Hmmmm....I wonder why she thinks that would be a problem for me?

I am learning that the donor/recipient community is larger than I expected. As I talk about it publically I hear of more and more people in my own extended circle who have given or gotten kidneys. I also hear too often of people who are waiting for a kidney or of people who have died waiting.

Thank you to my mentor for her encouragement. I need to go stretch now!

Tuesday, June 16, 2009

My Co-Worker Needs a Kidney

Robert reminded me today that we first met in 1996 or 1997 when I was a consultant working in his department. I was managing a re-engineering project at the time and I doubt that the workers there were particularly happy to see me. (If it were relevant, I would explain that it was not really re-engineering, but that is the easiest way to describe it that most will understand.)

But I really got to know Robert in 2000 when I negotiated my first union contract at the Hospital. I came to Johns Hopkins in 1998 as an employee and moved into the Vice President role in 2000. One month after I was officially appointed to that job, our bargaining union contract expired. I led the Hospital’s negotiation team and Robert was one of the union delegates who “sat across the table” as they say. I remember him being strong, persistent and representing the needs of his fellow union members well. I developed a great respect for him.

After the negotiations were over, I learned that he was also on our employee recognition committee and served as the photographer at all our employee events. In that role, I got to know him even better. He even was the photographer at my assistant’s wedding. On one of my work-days, I shadowed him and we painted a patient room together. That day, he went out of his way to make me feel welcome and to introduce me to as many of his co-workers as possible. I was impressed at how well liked he seemed to be and how many people he knew by name. He is a very quiet, hard-working person. He is liked by everyone – seriously, I don’t know anyone who has ever spoken ill of him.

About two years ago, I didn’t see Robert for a long while. When I did finally run into him in the hallway outside my office, I mentioned that I had missed seeing him around the hospital. He told me that he had been ill. The way I remember the rest of the conversation is that I asked if there was anything I could do. He jokingly said something to the effect of “Only if you have a kidney.” I told him that I happened to have an extra one and that he could have mine. In retrospect, I don’t think he believed me. (I asked him today if he believed me that first day. He said, "Well, I didn't not believe you." Ever the diplomat!)

I went straight to the transplant office and told them I had found my recipient.

Note: Robert gave me his permission to share this part of the story. He even jogged my memory about when we first met. It is important to me not to violate his privacy without his support and in the healthcare world we would not violate the privacy of a patient.

Monday, June 15, 2009

Getting Approved to be a Donor

I knew that being approved as a kidney donor would be a lengthy and detailed process of medical examination, but I was completely wrong about the reason for the scrutiny.

I work in the medical field. For thirty years, I have been in and around hospitals. But as I went through this process, I began to realize how naive I was. I thought the tests to approve me as a donor were to determine if I had a kidney healthy enough to be of value to a recipient. I worried that I was too old and no one would want a 55 year old kidney. Would my kidney be big enough? I could be described as petite.

So I first met with the Social Worker. I am a Social Worker so that was comfortable for me. She asked about my emotional makeup and living arrangements. She seemed to be determining if I had the resources and support to aide me through the surgery and recovery. I met with the Psychologist next who I assume was making sure I wasn't a wacko. Just kidding. He seemed to be determining that I was stable and was not being coerced in anyway. There also was an ethical issue to consider in my case. My designated recipient was a co-worker. Was there anything I might gain from giving my kidney to this person? For example, if the recipient were my supervisor, I might think by giving my kidney, I could get better hours or raises, etc. But since, I hold a higher position in the organization than my recipient, I have nothing tangible to gain.

I actually found these interviews helpful and not at all intrusive. It was really the first time I had talked about donation in detail. By talking about it, I was able to clarify for myself my concerns and motivations.

Then the medical tests started. Twenty-four hour creatinine - every drop of urine for 24 hours has to be collect in a jug and refrigerated. That was gross. There was lots and lots of bloodwork, but our phlebotomists are the greatest. I had a CT scan with contrast of the abdomen to get a clear look at my kidneys. Two interesting things happened with the CT. The technician had my same birthday (though years younger) and his first and last name where my younger and older brothers' first names. I love discoverying silly connections like that and I will not forget him. And, my left kidney has two arteries. That is not so unusual, but most kidneys only have one artery enering it. If my recipient has only one artery, then my two arteries will have to be joined into one so that it can be sewn to the recipient's one artery.

The most challenging test was the cardiac stress test with an echocardiogram. I hate doing cardio exercises in the gym so I was afraid I would not do well. I had never had an exercise stress test, so I didn't completely know what to expect. I knew I would walk on a treadmill but that was about it. Yes, you walk on a treadmill, but at certain timed intervals, I think it was every 3 minutes, they not only increased the speed, but they also increased the incline. You start off nice and slow and flat. After about 12 minutes you are running up a steep hill!! When you absolutely can't go anymore, you jump off the treadmill and roll onto the exam table on your side as fast as you can so that they can get an echo image while your heart is at its most stressed. Oh my gosh, it was stressful and I'm glad there are no video cameras. I guess I passed.

Once all the tests were complete, I met with Dr. Hamid Rabb to go through the results. That is when my eyes were opened. His job was to look at my current health, the health of my parents and siblings, my lifestyle and my tests. Then to look into a crystal ball and predict my future. Was there any reason to think that my remaining kidney would fail? Was there any reason to believe that my health would deteriorate and place stress on my remaining kidney? Would I develop hypertension or diabetes?

Dr. Rabb said, "My job is to make sure we end up with two healthy people. The worst thing would be if you, the donor, went from healthy to unhealthy." At that moment, I was blown away. All this was not just to make sure I had a healthy kidney to give to someone, but to make sure that I would remain healthy. No matter how badly someone needs a kidney and how willing someone is to give them theirs, they will not jeopardize the donor's health.

I was ready.

Am I Nervous?

Everyone keeps asking me if I am nervous. I am not – at least not yet. I have been going through a weird process of putting my life in order. I feel like I have to have everything organized and complete just in case ... I really do think that everything will be fine, but I like to think that I live with no regrets. A surprising inner calm has come over me since I got the date; although you would not know it if you were around me manically trying to get things done before D-Day – Donate-Day, June 22.

I was approved for donation a couple of months ago. It was a very extensive process and I was very happy to be deemed healthy enough to donate. They asked me when I would like to have the surgery. That seemed strange to me - that I got to give the time of donation - within a range, of course. They said that the donor had a lot of say in what happened next. So I told them my preference was to do it over the summer because I teach at Johns Hopkins University in the spring and fall and wanted to sandwich this in between my classes.

As the days passed, I began to think that it was not going to happen this summer. And then, out of the blue, they called and asked if I was free on June 22. I did not even look at my calendar. I knew I would make myself available.

So suddenly I had a month to prepare to take off from a demanding job for up to six weeks and to arrange for someone to come and stay with me. Oh, did I say that I had my kitchen gutted a week before the call I was so sure the surgery would not happen?

But with all the activity, an inner peace has come over me. I am not sure where the calm is coming from. This certainly isn’t a calm event. Maybe it is because I am at peace with this decision. I hold the ability to save another's life or at least restore some of their health. The miracle of medicine. I don’t see how I could not do it.

Oh, just to prove that I am not just in denial - I had some tests run today and my blood pressure was 127/76 and my heart rate was 58. So biometrics support my sense of calm!

Why I Am Donating A Kidney

In about a week, I am donating my kidney. It will be transplanted into a complete stranger, but in doing so, one of my co-workers will get a kidney as well. There was not a single event that brought me to this decision, but rather it was more like a journey - a journey that began 10 years ago in a Fell's Point bar with a phone number on a napkin.

I am the vice president of Human Resources at The Johns Hopkins Hospital and Johns Hopkins Health System. It is an extraordinary place in the heart of Baltimore. My job brings me in contact with many of the over 9000 people who work at the hospital. So I was in a position to hear about one specific employee's need.

How Did I Make This Decision

About 10 years ago, ABC did a documentary called Hopkins 24/7. I was invited to the wrap party and started a conversation with one of the physicians featured in the series. The physician was Bob Montgomery, Director of our transplant programs. I told Bob that I had spent time in the operating rooms and would love to see a transplant. He took a napkin from the bar and wrote down his beeper number. He said that most Tuesdays they did a live donor transplant and I could come and watch. (Observers are discourage in the ORs, but at that time, it was allowed). He said I could beep him when I found a free Tuesday and he would arrange it. So the week between Christmas and New Years that year I beeped him and was able to watch this extraordinary procedure.

I remember that day in great detail. I literally cried when I saw the transplanted kidney "pee" for the first time. I was even more impressed when I passed the recovery room and the donor was already sitting up talking while Bob was still closing the recipient. I still remember asking how the donor was related and hearing them say that he was a friend of the recipient. I always thought of donors as being a family member.

It made a big impression on me that a friend would give his kidney.

A few years later, I was asked to be the speaker at a minority donors' celebration. In order to write my remarks, I had to do some research. For the first time, I learned about the extreme need for kidney transplants and the lack of donors. So I mentioned to Bob that I might be interested in being a donor. He said that I would make a good altruistic donor. An altruistic donor is one who gives their kidney to anyone who needs it without designating anyone as their recipient. Altruistic donors give in the purest way imaginable.

I thought about it, but decided that I wasn't ready for that. It was important to me to have some connection to the person to whom I was donating. So I began to wait and wait and wait. I am not sure how I thought I was going to find someone who wanted my kidney. Maybe I wasn't truly ready yet.