The decision to try to get a transplant started with the complicated math sick people do when they dare. These are word problems really: If John is a 48-year-old man with four children, one wife and two dogs, and he has been living with type-1 diabetes for three decades, how many good years does he have left?
I started asking myself this question in my 20s. I asked it more intently at 30 when I married Laura and we started having children. I thought I would ask it less as the children grew older, but I am wrong. As they started to become teenagers, instead of feeling like I had done my job and sent them on their path, I only wanted more time with them. They still need me. I still need them.
As I, and they, grow older, my questions become more specific and more complicated. Will I be able to make vaguely inappropriate toasts at their weddings? Will I be able to babysit their children? When will I become a burden to my family?
I began to not like the answers. The math no longer worked.
Instead of watching them graduate from college, I was going to become their admissions essay as they detail the pain and embarrassment of taking care of their sick dad.
I was becoming consumed with the fear of getting sick. I was terrified of being a middle-aged man who sticks around a little too long, drains the life force from his family and then finally has the decency to die.
So I made a choice. I wanted a pancreas transplant.
I was a freshman in high school when I suddenly felt tired and thirsty and had to pee all the time. After about a week, I heard my mother speaking quietly on the phone to her friend Jan, saying she thought it was diabetes. She made a doctor’s appointment for me.
The doctor, an older guy, told me I had juvenile diabetes because my body stopped making insulin. He seemed to know little about the disease beyond that. He said I could expect to have a “normal life” until I was about 30 years old. I can still hear him saying it.
I did my best to control the disease. I gave myself insulin shots for 22 years and then used an insulin pump for 12 years after that. At the turn of each decade of my life, when I turned 20, 30, 40, I asked myself and God for 10 more good years. To hell with that doctor.
I knew complications would come. I could cite the statistics like I used to rattle off the batting averages of my beloved Red Sox.
Diabetics die from heart disease and stroke at twice the rate of other people. More than 60 percent of leg and foot amputations not related to an injury are due to diabetes. Diabetes is the leading cause of new blindness. Nerve damage happens in 60 percent to 70 percent of people with diabetes. People with diabetes are at high risk for gum disease.
In my future, I saw a footless, blind and impotent man having a stroke. And my gums would hurt.
After we got married, Laura and I lived in Phoenix for 14 years. My doctor there was tough and smart and forced me to be disciplined. I saw her four times a year for 14 years. At each appointment I asked her about a transplant. Each of those 56 times, she would shake her head, smile and say: “Maybe later.”
My control, she said, was too good to justify the risk of a transplant. But I felt that control begin to wane no matter how hard I worked.
In my mid-40s, I was sticking my finger 10 times a day, drawing blood and testing my glucose levels. I ate right, exercised and was disciplined. Managing this disease was consuming my life, but my lows were getting lower and my highs were getting higher.
When low, I could not think clearly, could be irrational and “difficult” – the nice way of putting it. Laura bore much of this and I could see the way my kids looked at me. Our son Theo, in particular, was wired in to how I was feeling. I could see him giving his mother a look and hear him whispering in her ear. “Is Dad all right?” “Is Dad getting low?”
More dangerous, when very low, I could lose awareness and then consciousness. I had been to emergency rooms.
In a healthy person, blood sugar levels, a measurement of the amount of glucose in the blood, should be in the fairly tight range of 60 to 90 milligrams per deciliter. My blood sugars began dropping down to the 30s and 40s. They were spiking into the 250s.
I was damaging my body.
I read everything I could to find ways to control my blood sugar better and stay healthy. Alpha-lipoic acids might protect my body from cell damage, so I should eat spinach. Polyphenols would promote glucose control and vascular health, so I should try green tea and dark chocolate.
Dr. Oz told me to eat cinnamon.
But nothing worked, and I didn’t like green tea. I no longer wanted to stay the course and evaluate my options. That was a path of diminishing returns. The only way to stop being a diabetic is to get a pancreas transplant.
Pancreas transplants are not experimental, but they are not common. In 2013, there were 16,894 kidney transplants performed in this country and only 256 pancreas transplants.
The failure rate in the first year for a transplanted pancreas is about 10 percent. I did not care. Life after transplant would require a handful of drugs every day for the rest of my life to suppress my immune system. I did not care.
In early 2012, Laura was hired as managing editor of The Enquirer, and I was hired as a reporter. So we moved to Cincinnati, put the kids in school, bought a home and I found a doctor.
Dr. Marzieh Salehi at the University of Cincinnati Medical Center worked with me to gain control. She tried to eliminate my low blood sugars and the highs but nothing was working.
At my second appointment, I told her I wanted a transplant, and I waited for her to shake her head, smile and say: “Maybe later.” She didn’t say that.
In December 2012 I have my first meeting with the UC transplant team. This is my first time in Room 6104. I arrive early, taking a seat at the front. I will know the most, I will ask the smartest questions, I will “win” a transplant. At the orientation, one of the patients, a woman in a black beret and a purple track suit, falls asleep during the meeting. I figure I have her beat.
I meet Dr. Tayyab Diwan. He is 38, handsome and confident. His suit is tailored, his eyebrows are perfect and he is the smartest guy in the room. It would be easy not to like him. I like him right away.
Dr. Diwan tells me about the surgery, that I will keep my original pancreas because it still performs some vital functions. He says all surgeries come with risk and that this is a long and fairly complicated procedure. He asks if I have any questions. I have three.
“If you had a family member in my spot, would you recommend this surgery?”
“Would you recommend he do it here?”
“There are a couple of places I would recommend. This is one of them.”
“Can you do this surgery?”
The question amuses him. “A pancreas transplant? Yes, of course I can do this surgery.”
I know enough. I want a transplant, and I want this guy to do it.
Before I will be considered for a transplant, I need a series of tests to measure my health. My heart is checked, my circulation, my lungs, and even my teeth. A transplant recipient must be sick enough to need one and well enough to withstand one. It is not a fine line, but it is not too wide either. All my results and my medical records will be evaluated by the transplant team at the University of Cincinnati Medical Center. Christmas passes and then New Year’s Day. This wait is excruciating and Laura and I tell nobody. On January 10, 2013, my phone rings while I am at work. I am listed.
Now that I am on this list, I start doing a different kind of math, looking for a pattern, an “x” and a “y,” so I can calculate a probable timeline. Trouble is, the list is not linear — it is not like taking a number at the deli.
To receive a pancreas, somebody must first die. And that person has to die suddenly, and he or she has to die while still healthy. In all likelihood, that means a victim of a car crash.
When nobody is looking, I look up numbers on traffic fatalities.
Traffic safety improvements including air bags, car designs and seat belt usage have dropped the fatality rate – reducing the number of potential donors. In 2013, 923 people died in traffic fatalities in Ohio, the lowest number since the state started keeping statistics in 1936. I feel like I should not know these statistics, not like this. And that I should be happier about it now that I do.
Other factors include tissue matches and blood types. The person who dies has to be a donor and close.
The process includes so many variables, each completely independent of the other, it feels more like randomness. Actually it feels more like Chaos Theory, which says seemingly random events have an underlying order. But there is no order I can see.
On the morning of May 13, the day after Mother’s Day, my phone rings.
The voice on the line is calm. “We have a pancreas for you.”
I am at my desk in the newsroom. This transplant will change my life, save my life, change our kids’ lives. But all I can think about is her tone. This is not an imperative sentence. It is not exclamatory, either. It’s a simple declaration: “We have a pancreas for you.”
I go to tell Laura; she knows when she sees my face. We race home, pack a bag and write a note to the kids. They will see it when they get home from school.
At the hospital, I learn the pancreas is being flown in, but nobody will say from where. After 4 hours, I am wheeled into an elevator and down for surgery. This is happening.
I meet the anesthesiologist. I meet with Dr. Diwan, who tells me he will check the pancreas as soon as it arrives. I ask him how he will know if the pancreas is not good. Will it look funny? Will it smell funny? Will it be like chicken that has gone bad in the refrigerator? He puts his hand at the foot of my bed and tells me to try to relax.
Just as I am about to be wheeled in for surgery, Dr. Diwan walks through the curtain and says he doesn’t like this pancreas. An artery to the organ does not look right. “Let’s not do this,” Diwan says. “Wait for the right one.” I am listening to hear if this is the start of a debate we get to have. It is not.
I look around the room, at the machines, my wife, the nurses. I ask Diwan if I should just put my pants on and go home. “Yes.”
From that day forward I am anxious. Every morning I am sure is the day. Every time the phone rings I map out routes to the hospital in my head. I also feel tethered; I have to be able to arrive at the hospital within one hour of receiving a phone call telling me there is a pancreas for me.
I miss my father’s 80th birthday party in Massachusetts. We cannot take the kids on vacation. We miss our annual trip to Fenway Park. My sister’s husband is sick in Chicago; we cannot drive up to help her out. I get to know every corner of Cincinnati, and I grow to love the city, but the leash feels tight.
Worse, I am just absent. I have always thought being a good dad is easy. It means being present and paying attention. It means sitting down in the kitchen while Theo has a bowl of cereal with chocolate milk and chatting about school. It means watching a football game with Henry and talking if he wants to talk, being quiet if he want to be quiet. It means kicking the soccer ball in the front yard with Luke or walking with Lucy to Graeter’s so she could get a scoop of cookies-and-cream.
I am not doing enough of that anymore. I am always preoccupied. I am waiting for the phone to ring.
The longer I wait, the more desperately I want the phone to ring, and it makes me feel guilty.
I know somebody has to die for me to get a pancreas. The donor already seems like a ghost to me.
But I can imagine the donor’s family. They are waiting for a call they do not want. Worse, they don’t even know they are waiting. But that phone is going to ring, and a stranger on the line is going to tell them about an accident or a stroke or a suicide attempt.
I know what those calls are like. I received one once.
My sister Maura died in a car accident when she was a junior in college and I was a freshman. We were the youngest of five children and close. She was spending a year in Europe and had left me as her emergency contact – a silly thing we did because we both thought it more likely to be arrested than get in an accident.
So I got the call from the State Department telling me my sister was dead. And then I had to call my dad. He said nothing at first. That call was the hardest and worst thing I ever had to do. Now, every day I am hoping somebody will get the same call. I am losing my humanity while I am hoping to be made whole.
On the Fourth of July, thunderstorms make driving awful. I hear an ambulance and I wonder about the condition of the person inside. I am becoming a ghoul.
The summer passes, the kids go back to school, the Red Sox win the World Series. The weather begins to cool and the rain starts to fall. My listing anniversary is beginning to loom, and I am afraid of what this waiting is doing to me and to Laura and the kids.
I tell Laura that I regret being listed and that, when we get to one year, when it is time for more tests and to be reassessed, that I won’t do it. It is all too much, too selfish.
On the night of Friday, Nov. 1, All Saints Day, my phone rings at 10. Laura is upstairs putting Lucy to bed. I am in the kitchen with Theo and Luke. Henry is out with friends. It has to be Henry.
The woman on the phone has a calm voice and a southern accent. “We have a pancreas for you.”
She asks how I am feeling. I tell her I am fine. She asks if I have a fever, I do not.
Theo and Luke, apparently, have listened intently to every call I received for the past 11 months. They stand right next to each other. They look at each other and then at me. They know right away.
“Is this it? It that the hospital?” I nod my head and try to concentrate.
They stand on the stairs, each holding the other’s arm, looking like they are boxing each other out for a rebound.
“Can we tell Mom?”
“No,” I say to them, “not yet.”
The woman on the phone asks if there is a problem.
She tells me to come in. She wants to know if I could be there in an hour. I tell her I can be there in 15 minutes. She tells me to drive safely and to report to the emergency room and then the sixth floor.
“Go tell your mother,” I say to the boys.
Laura and I rush to the hospital, and then we wait. I cannot eat or drink, it feels impossible to sleep and it turns out I have very difficult veins to insert an IV into. I am grumpy and anxious and my arms hurt. A nurse tells us the donor “is downstairs.” I am no longer grumpy I just feel like a jerk.
The next morning, Kathy Daley, the transplant social worker, comes to my room. I think maybe she has come just to see me because she is that terrific. Turns out this is the first Saturday of the month and there is another transplant meeting. This is a special one: The family of a previous donor will be there.
I walk down the hall with my IV stand and return to Room 6104.
A couple sits at the end of the table. They are about my age. They sit quietly and then begin slowly, sharing the story of their daughter who died in an RV accident five years earlier. The mom has notes.
Her daughter’s name was Ellie and she was 10. They donated her organs because it felt right. “That’s what Ellie would want,” the mother said. “Her love language was gift-giving.”
One by one we go around the room to thank them. It is the same group from last time, minus the woman who had been put on hold. I wonder what happened to her.
When my turn comes, I want this family to know what it means to me. I want them to know that I have four children and a wife. I want to tell them what their gift probably meant to a person just like me.
But I can’t do it. I can’t say any of that. I say “thank you” and stop. I do not want to cry in front of them. I want them to be happy. And they have brought their daughter, Ellie’s little sister. I wonder if she looked like Ellie. I wonder if she could remember her.
I won’t cry in front of this little girl. I stand up in my hospital gown and try to leave, but my IV stand gets stuck on the chair, and I have to yank it free. I get to the door, say thank you again and leave.
At 10 o’clock that night, they wheel me in for surgery.
Two days earlier, on Oct. 31, at 4:40 a.m., a 27-year-old woman got into her car in North Bend. She took a right on Stephens Avenue. Then a left onto Lawrenceburg Road. She was driving alone and headed to the early shift at the post office. There were cornfields on both sides of the road.
She passed four silos, and the road began to bend left. Then back to the right again. She was just half a mile from her home when the back end of her 14-year-old Nissan began to slide out. The road was wet and her tires were old. It was 58 degrees.
She began to spin counterclockwise. She crossed the center of the road, now sideways, in the dark, at the mercy of chance and physics.
She was wearing a seat belt, but the utility pole was sitting just off the road.
Doctors would declare her brain-dead 12 hours later. She was a healthy woman with a strong body and a devastating head injury. A perfect organ donor. She was a wife and the mother of four children. Her heart kept beating.
I see a light and hear sounds. I do not know where I am. I fall back to sleep and wake again. Now I can distinguish voices and beeps. I am in a hospital.
I reach out for Laura, I know she will be there. In all the world I want to know only one thing. Did it work?
“Yes,” Laura says, “it worked.”
For the first time in 35 years, I am not a diabetic. I fall back to sleep, a new pancreas working inside of me.
The following morning I am in the surgical intensive care unit. I have a central line in my neck, an IV in my arm, a catheter in my penis, a tube down my nose, a drainage tube coming from my stomach. My incision is held together by 20 metal staples, and I am wearing “medical mittens” so I cannot pull any of it out.
The nurse tells me to get up. “Like, stand up?”
“Yes,” she says, “you must walk.”
Less than 12 hours after surgery, I walk through the SICU, singing a song from the “The Brady Bunch” which falls into my head: “I think I’ll go for a walk outside, yeah, the summer sun’s calling my name.” The drugs apparently agree with me.
I say hello to each person I come across in the hallway like this is the greatest day in the world. I am standing up and I am walking. I am not taking insulin. This is easy.
Over the next few days I learn that having a catheter is bad, and that getting it out is worse. I also learn the benefits of morphine. I am not permitted to eat or drink anything in the first six days after surgery. I have an IV to hydrate me and give me medicine. I feel tired but good.
Dr. Diwan visits every day and each time asks me how I am feeling. One the third day I tell him I feel great; that I am not a diabetic anymore. I begin to cry and am immediately embarrassed. He nods his head, his face unreadable. He has seen success and he has seen failure. He puts his hand again at the foot of my bed, I realize this is a thing he does. He looks at Laura and then me and says, slowly, “This is going to be a hard road.”
I wrote a story once about a little girl named Amber who had cancer. Her mother noticed that Amber’s vital signs got better when her sisters were in the room. When my kids come to visit for the first time, I understand. Lying in my hospital bed, I can close my eyes and hear them and pretend I am at home.
Laura has warned the kids that I was sick, that I have tubes coming out of my neck and nose and arm and stomach, that I am not regular old dad.
Henry, 15 at the time, doesn’t visit the first day. I think he does not want to see me sick. I think he figures I would not want him to see me sick. I had told him I would be fine and that is good enough for him.
Theo, 12, does not want to look at me, but he wants to be near me. He stands next to the bed, places his hand on my head and looks away. He wants me to know he is close.
Luke, 11, walks in and gives me a hug. I do my best not to cry.
Lucy, 7, looks at me, assesses the room and starts asking the nurse questions. What’s that blue thing? What is in that tube? Where is his old pancreas?
Every couple of hours my blood sugar gets checked – the easiest way to make sure my new pancreas is still working. Two days after surgery, I start the day at 79, but then start creeping up: 79, 85, 112, 146. This feels like diabetes to me. I know this feeling. I hate this feeling.
This increase can mean only one of two things: my blood sugar is rising because of the trauma my body is experiencing or my pancreas is starting to fail.
Doctors and nurses are confident it is the first scenario. And, yes, they have actual training and experience, but I’m sure they are wrong. I begin to worry.
Two hours later, another blood sugar test. This time, I am 112. I fall asleep while Laura sits next to the bed.
Doctors are pounding me with anti-rejection medicine. My immune system is being suppressed so that my body will not reject the new organ. Three or four days in, and I begin to feel lousy from no food, bad sleep and heavy drugs. I tell Laura I feel like I made a mistake. I start to cry, again. I am 48 years old, and I have cried five times since I was a kid. I cried at the birth of each of our children. I cried when my sister died. I cry this day and tell Laura I fear I have made a mistake. For the first time I question why I did this. Dr. Diwan tells me the drugs will make me emotional.
Laura opens her computer and reads emails and entries from friends on Facebook. People are thinking of me. People are sending their thoughts. And people are praying. I mean, really praying.
Jennifer Wheeler tells me a group of Mormons in Mesa, Ariz., are praying for me. Rachel Greene has a friend of hers write my name on a piece of paper and put the piece of paper in the Wailing Wall in Jerusalem. Father Tom O’Hara, a longtime friend, says a prayer for me while saying Mass at St. Peter’s Basilica in Vatican City. The children of the Goodykoontz family and the Pichler family and the Fleury family all add me to their bedtime prayers. A group at a Methodist Church makes a prayer blanket for me. A Jewish temple in Phoenix prays.
I have never been a person who prays, but these prayers make me feel cared for, lighter. I don’t know yet how much I will need them.
I spend one week in the hospital. A week of optimism followed by certainty that I was failing, that my new pancreas was not going to work and I would let everybody down.
My parents come to visit and they look so worried. On their last visit, my father kisses my head and my mother stands next to the bed just looking at me. They are worried. I decide right then I need to get a mirror so I can see what I look like. It must be awful.
The kids come every night. Henry starts coming too. He is quiet and sweet and a little bit nervous. I am sicker than he expected: I am pale, I have already lost a lot of weight. Each night Laura takes the kids home and then returns. She is always here, sitting at my bed, trying hard to look not worried. She watches everything. I need her.
The doctors and nurses had told me I would feel awful after the surgery, but I thought the rules would not apply to me. I am exhausted and hungry and my cheeks are hollowing out, but I begin to make progress. Thursday the tube in my nose comes out and I get to have something to drink. Friday I get chicken broth. Saturday I am allowed real food. I order a ham and cheese omelet, and it tastes so good. It feels like I am in Paris.
Later this morning, one week after surgery, Dr. Diwan tells me I will go home the next day. That seems preposterous but he says the pancreas is working and that my body is handling the drugs well. I tell him how awful I feel, and he says that is normal for a person who had major surgery and is on a new drug protocol. Our positions are changing. I am beginning to think this will not last, he is beginning to think it will.
At 3:30 I take my first shower since my surgery a week earlier. I want to make myself look better before I go home.
I still have a central line in my neck and a drainage tube in my stomach. Laura helps me cover them with an adhesive plastic. I take the shower and return to the room feeling weak and tired. I cannot get the plastic off my neck without pulling at the central line and need Laura to help untangle me.
Now I am standing naked in the middle of the room. I am dripping wet. I have lost so much weight. I feel awful and pale and dizzy. I am tired and I am wearing flip-flops.
“Get out!” I tell my wife.
“Get out, close the door!”
“John, no, you need help.”
“Get out. I’ve lost so much. I have no dignity left.”
Then I cry again.
I feel awful about everything. That she has to see me this way. That I have become so pathetic. That I have done this to us. That I am sick and she has to take care of me.
Laura smiles and leaves the room. I put on clothes, real clothes and sit for a while. When she comes back I tell her I am sorry.
Laura, kindly, says this is me becoming human again, a little spark of the actual me. That night I feel better. My sister Sally comes to visit from Toronto. Laura, Sally and I, plus all the kids, sit around the room while Theo, Luke and Lucy ask us riddles from a book.
Later, Sally takes the kids home. Laura climbs into my hospital bed and we watch TV. She puts her head on my chest and falls immediately asleep. I turn off the television so I can hear her breathing.
The next morning I walk out of the hospital. The air is crisp, the sun is shining and I cannot quite stand up straight because of the six inches of metal stitches running up my belly. I was nervous about going home, but now I am excited. Lucy comes down the stairs to the front door. Doctors have told me I cannot lift anything heavier than a gallon of milk for at least six weeks. I cannot pick her up, but she stands on the stairs while I kneel down and hug her. I try to cry silently, but she notices. She says: “Dad?” She has never seen me cry. A moment later, louder and more worried: “Mom?” Laura tells her these are tears of joy.
The boys and I watch football and I eat some macaroni and cheese, and then take Henry to his high school football banquet. It is a great day. I am better than I expect. I am better than the kids expect. The next day, Monday, I feel even better. I get a haircut, I go grocery shopping, which means I actually do something useful for the family.
I will go to the post-transplant clinic three times a week for the first few months. I’ll get my blood drawn and wait for my results to come back. I will be weighed and talk to the nurses and doctors and social workers and the pharmacist. I get the sense that doctors and nurses just want to get a look at me. The first day, my numbers look good.
Two days later, Wednesday, Nov. 13, my pancreas is still working, but I no longer feel good. There will be no grocery shopping or getting a haircut today. I just feel weak and tired. I figure it is my weight. I have lost 16 pounds in the 11 days since the surgery and am down to 161 pounds. I have been feeling nauseated and cannot eat. Maybe the drugs are getting to me, too.
After my blood draw, they let me go home. They say they can call me with the results. It almost feels like the flu. Great.
The kids are back in school, and I have insisted that Laura return to work. The house is quiet. I try to read and then I try to watch TV. I can’t do either.
Late that afternoon, as the sun is beginning to set, Dr. Gautham Mogilishetty calls me. He is smart and funny and likeable. He combines what he knows from test results with what he can see with his eyes.
I am struck right away by how serious he sounds. He gets right to it: “Your bone marrow is beginning to wake up. It is beginning to make cells that we believe will be used to create antibodies to look for your pancreas.”
He is explaining something to me but I feel so tired. I am looking for a word that makes sense, something I can grab on to. Then he says it, the only word I don’t want to hear: “This is the start of rejection.”
Mogilishetty says I need to get back to the hospital immediately. “We should not wait,” he says. “We would like to cut off the head of the snake.”
This is the news I have been both dreading and expecting. My body is turning against itself.
At the hospital I learn the medical field’s double-word trick. Mogilishetty tells me that I am experiencing “rejection,” but that this is not “rejection-rejection.”
Even though this is just one “rejection,” I will be treated with an aggressive drug therapy. It starts with plasmapheresis, which will remove the plasma portion of my blood where the antibodies are located. After the plasmapheresis, I will receive a drug cocktail of Rituximab and Bortezomib which will combat things on a cellular level. I am told this is a form of chemotherapy, but it is not “chemotherapy-chemotherapy.”
I will later realize that it does not matter how many times they say the word, those drugs will make me feel awful. Even awful-awful.
It is unusual to start plasmapheresis at this time of night, so a man needs to be called in. Lying in the bed, waiting, I begin to understand the scope of what is happening. My own body is trying to betray me. Nurses are hovering and Dr. Mogilishetty stays late. I get sent downstairs to get a port inserted into my chest because I need a series of treatments.
Joseph shows up with a machine that looks like it could be used in dialysis and in fact is. He is an older guy, bald-headed and reminds me immediately of Scatman Crothers. He tells me I am in his prayers and the prayers of his entire family. He puts his hand on my foot and says: “They know about you, and they are praying for you, too.” I believe him.
The machine makes a rhythmic noise. I see the blood leave me and then come back. Joseph sits and watches the machine. Laura is there, watching him watch the machine. I am afraid, but I am tired. I fall asleep.
The next day I am released again. The beginning of a revolving door for me. This anti-rejection treatment calls for four treatments over nine days, and doctors warn that the side effects will accumulate. By Friday I can’t eat, read or sleep and Lucy has a violin recital. This is my chance to let her know I can still do dad things. If something is important to her it is still important to me. I got this pancreas transplant so I could be there for her, so I will take her to this recital.
It’s somewhere on the University of Cincinnati campus and I don’t know where. Now Lucy is getting nervous about the time, and I park on the wrong side of campus. We run to the building and I am sweating through my coat. We make it, but barely. Her instructor gets her on stage, and I collapse on the chair. I am terrified at how much it takes out of me.
After my second treatment, I begin to lose faith. The anti-rejection treatment is more powerful than I knew. I am exhausted and cannot sleep, I have diarrhea and cannot eat. I begin to feel less than human. I am surviving, but that’s it. I am back home but I can see the way the kids are looking at me. It feels like I am watching the world through a tube, and the tube is getting longer. I never expected to be this sick. It does not make sense to me.
It is mid-November and I know that if I am going to lose this pancreas, it is probably going to be now. Then, my blood sugar starts to feel high. I am certain the efforts to stop the rejection have failed. At 7:30 that night, my blood sugar is 252. It should not be above 150. Thirty minutes later, I am at 269.
Laura is crying, the kids hear us whispering and I feel like I have failed, that I have let everyone down. All the people who prayed for me wasted their time.
“I won’t do this again,” I say to Laura.
I need to talk to Dr. Amit Govil. He is in charge of my post-transplant care and he is smart and compassionate. He is a man of faith and science. “When I am here, I believe in medicine,” Govil will tell me. “But I do believe in karma.”
Govil agrees that a blood sugar level of 269 is far too high, but he tells me I am looking at just one indicator of a pancreas’ health, and he is looking at many. These feel like empty words to me. I go to bed, exhausted and defeated.
I wake at 3:42 in the morning. The house is silent and asleep. I slip out of bed, walk downstairs and sit at the dining room table. I have a blood-test strip in my hand. One drop of my blood will tell me everything. But I do not want to use it. I already know the pancreas has failed.
I sit at the table thinking what words I can say to Laura to express my gratitude and how sorry I am. What will we tell the kids? They have been through so much. How do I explain this to all of our friends, all the people who prayed for me?
Then I start composing a letter in my head to the unknown family of the person who had donated the pancreas. I have taken this gift and ruined it. I have failed them. I do not know the words to tell them that I appreciate their gift and that I have screwed it up. How do I write a letter to this family to say thank you and I’m sorry at once? Will it be like another death for them?
If my blood sugar is high, the pancreas has failed and I am diabetic again. I feel like I am the only person awake in the world.
Why have I done this? I had been healthy, or healthy enough, and now I am up in the middle of the night composing a letter in my head.
I take the test.
My blood sugar is 103. The pancreas is working. I sit at the table and cry. I am embarrassed. And relieved. I climb back into bed and tell Laura I am fine.
I still can’t eat. Laura keeps asking me what I want, she says she can make anything in the world. But I cannot get myself to eat. A friend who knows I am sick and not eating brings me brownies laced with marijuana. I hope the pot will stop my nausea and spur my appetite.
An hour later I learn that pot is much stronger than it was 20 plus years ago. I do not get high, I get very high. I do want to eat, but I am not capable of making food. I go to the kitchen and become a sitcom. I am hungry and giggling and cannot figure out how to make food. I eat chips because I can open a bag. I text Laura and ask her to come home. I tell her I ate too much brownie.
I decide pot is not for me. I am always tired and always cold. Each day I get up, put on a hat and scarf, a T-shirt, long-sleeved shirt, and a sweater, long underwear and pants, and go downstairs and sit on the big orange chair in the family room. I will stay there until I go back upstairs for a nap. I have lost 20 pounds in 20 days. I am coughing worse than ever. It is a hacking cough that begins to hurt my back. The next day I break.
On Friday, Nov. 22, after my blood draw, I put my coat over my head under the fluorescent light and fall asleep in the exam room. Jane Revollo, the transplant pharmacist, wakes me, and I start coughing and cannot stop. Then I cannot catch my breath. Finally the room is quiet, I hear the white paper crinkling underneath me. I am not in control of anything. I start to cry. I do not feel like much of a man. I say: “You have got to help me.”
Revollo knows me by this point. She looks at me, writes something down and says she will help me. A string of doctors and nurses comes in and asks me questions. They order an X-ray for my lungs. I have pneumonia.
For the first time I begin to think I might actually die. Not suddenly and dramatically, but just kind of become a sick guy who eventually catches something and fades away. It doesn’t feel scary to me, just kind of pathetic.
That weekend, the kids start very getting nervous around me which makes me feel awful. They don’t want to make noise in the house. They are checking to see how much I am eating and drinking. I mix my food up on the plate like I’m avoiding eating my vegetables; I fool nobody. Each time I cough, the kids look at me anxiously. Laura is becoming a caretaker. I had this transplant so they would never have to see this. I am a fool.
Our friend Megan comes to visit. She takes me to a doctor’s appointment, sits with me, holding my hand while I close my eyes and fall asleep. She is quiet for perhaps the first time in her life. I am sicker than she expected.
On Monday Nov. 25, three days before Thanksgiving, I wait again for my blood tests. Mogilishetty walks into the room and pauses. He gives me a hard look and says: “We need to readmit you. You look awful.”
I am back in the hospital, and I am not sure what I will be thankful for. The new pancreas, certainly, but it feels like I am getting sicker, not better. Turns out I have pneumonia and it is in both lungs, and it is bad. The doctors bombard me with antibiotics for two days and on Wednesday allow me to go home.
My family was coming in for Thanksgiving because we were going to have so much to be thankful for. I ask them not to come, which feels like a defeat. Every year I cook the turkey at our house and make a big production out of it. I look for the latest methods, I consider brining and dry-salting, going with super-high temperatures or going low and slow. This year I just kind of stick it in the oven. When it is done, I ask Henry to carve. He is gracious and grabs the knife, but this feels sad to me. I should be able to cut a turkey, but my hands shake from the drugs and I am just so tired. I cannot do it.
During grace, we say a prayer for the person who gave me her pancreas. That night I start getting an odd pain in my lower abdomen.
The next 10 days are more of the same. My weight is now into the low 150s and I remain cold from morning till night. Laura buys me a heating pad to sleep with, which means I am now officially elderly. On Dec. 6, a Friday, I have another appointment. When I am finished I walk through the basement at the UC Medical Center.
By now I know each of the 226 steps to the lobby. But this day I cannot make it. I see a bench across from a vending machine. It is only 72 steps to that bench, and I have to concentrate to get there. Now I am sitting, and I am despondent. I am more than a month out of surgery, and I feel worse than I ever have.
Dr. Govil happens past the bench and stops. “Can you not walk from here to there?” Govil says, pointing to the lobby. “Today I cannot,” I tell him. He says he will arrange a meeting with all the doctors on Monday. It is time, he says, for me to get better. He says not to worry, but he looks back when he walks away. He looks worried.
Two days later, at 3 a.m. Sunday, I wake to a stabbing pain. I have not ever felt a pain like it. I am doubled over in bed, and Laura begins to panic. She has never seen me like this. She wants to take me to the emergency room.
I say, let’s wait. I have an appointment with all doctors on Monday. This night in bed, when the pain stops, I tell her that sometimes I think about going off my anti-rejection medicine. My body would turn on the new pancreas, the organ would fail and I would go back to being a diabetic. This now feels like control. Laura reminds me that I am not thinking clearly. I remember the person who died and gave me this gift and realize I could never do that.
At 5, the pain returns. Laura says we are going to the ER. I am admitted and assessed. I am asked to rate my pain level on a scale of one-to-10. Out of pride I have never said anything above a four. This morning I say “10.” Doctors put me on Dilaudid which is described as “hospital heroin.” After the drugs I relax, and get scans of my abdomen.
A couple of hours later, the ER doctor comes to my bed and says: “Your pancreas does not look right.” It is swollen and surrounded by a “fluid.” This is called pancreatitis and stranding. That’s all he knows. They are going to send me upstairs when a room is available. The words echo in my head: “Your pancreas does not look right.”
This is my fifth stay on the sixth floor. My children are seeing me as weak and old. I tell Laura I am sorry for sitting in a chair all day. I tell her I hate that orange chair. Some person gave me a pancreas and I am blowing it. The kids try to stay quiet in the house and they never squabble anymore because they don’t want to bother me. What kind of dad is that?
The same night, in our home, Lucy has had enough as well. She tells Laura she is afraid and confused. She thinks they are going to take my pancreas back. Laura picks her up and they both cry.
I know my pancreas has failed inside of me. But three days later, the pain goes away and the hospital releases me. Govil says my pancreatitis was likely because of an imbalance caused by a fast arterial flow to the organ and a slow venal flow from it. Perhaps my body finally achieved balance. He smiles.
But I still cannot eat. For my weigh-ins, I start keeping my coat on, and I wear boots to my appointments because I do not want to see the scale drop below 150. But I know the truth. I am 6 feet 1 inch tall, and my weight is now in the 140s. All I am is sickness. Until the day I wasn’t.
When the change finally happened, I did not even notice it. For a few days in a row, I didn’t get better, I just didn’t get worse. And then I stayed there until the morning of Dec. 20.
I wake that morning with a feeling I cannot recognize: I sit at the edge of the bed and realize I am hungry. By the middle of the day I don’t just want to eat, I want to eat a cheeseburger from Terry’s Turf Club. We go that night, and Laura smiles through the whole meal. Terry’s makes a delicious burger, and a big one. And I eat the whole thing. With bacon. I feel like an actual human being, and I am eating a cheeseburger.
The next day is the first of winter and the shortest day of the year, but at 11 in the morning the sun comes out and the temperature begins to rise. I decide when I see the sun that I am going to ride my bike. I love to ride. I am not a serious rider. I don’t wear a racing shirt or obscene shorts. I just love the feeling of a hard, 45-minute ride.
I promise Laura that I will just go a mile or two and turn around the moment I feel tired. Theo needs convincing, too. I tell them I need to start doing things to actually get stronger, that waiting around will not do it. Theo gives me the green light and Laura relents.
I bring out my bike and go into the house for my helmet. When I return, our neighbor, Horst, has his bike parked next to mine. He walks out the door, his pants legs already rolled up. I see that his jeans are lined. “I will come with you,” he says.
I make an effort to say no. Horst puts on his helmet. We turn out of the driveway. Horst stays behind me. The sun is strong, the wind is brisk and I am propelling myself, dependent on nobody. I go faster than I should.
I make it to Delta Avenue, all of 1.2 miles and my legs are burning, my lungs gasping. Horst says maybe we turn around now.
I turn around and Horst stays behind me, saying nothing. I am not sure if he is protecting me from traffic or just letting me be alone.
I understand now the network of people who have helped me. Not just my family, but my neighbors, and my co-workers, my friends close and far. They have brought food and prayed and dropped by. They have called and emailed and driven our children to school.
After the ride, I walk into the kitchen, out of breath and already limping. Theo is glad to see me. Henry smiles at me, and Luke asks if I need Mom. Yes, I say, tell her I am back.
On the morning of Christmas Eve, Laura reminds me that we have a large dollhouse that needs to be built for Lucy. I go up to our room, lock the door and open the box for the Barbie beach house. This dollhouse has four stories and an elevator and a three-car garage and outdoor staircases and a working toilet.
More than 60 pieces are held together by 119 screws. Teeny tiny little screws.
My hands still shake from the medicine, and they always will. I need to focus when I pick up a glass to drink, but I am going to do this. Placing the screws on the head of the screwdriver is difficult. Getting them in the holes feels impossible.
I call Henry up to help and he says he is glad to help. He sticks out his hand for the screwdriver and I change my mind. This is something I need to do. I am the dad, I make the presents for Lucy. It takes me half a day and it nearly breaks me, but I do it. I am so proud of myself.
Christmas morning feels normal. We wake up early, go through stockings and then down for presents. Lucy loves her dollhouse. We eat a big breakfast and then, late in the morning, the house gets quiet.
I begin to see what I have gained. I had spent so much energy the past 35 years trying to manage my diabetes, and I am not doing that any more. I had a series of bad breaks after surgery, but I have remarkable care. I have a family that loves me. I have made it through, and so has this pancreas. It is working. I felt my body coming back to life.
On December 30, I get my blood drawn again. Now I am well enough to appreciate all the people who have taken care of me. Three days a week Brian Lewis has been sticking a needle in my arm. When you are sick, when you are getting poked and prodded and going from appointment to appointment, you begin to appreciate people who do their job well. The ones who make you feel human. He is one of them.
Lewis is known in the hospital as a good “stick” man. He glides that needle in and it doesn’t even hurt and he treats me like a human being. Today I can finally appreciate it. I thank him, Lewis smiles and says: “Nothing to it but to do it.”
Dr. Mogilishetty walks into the exam room for another routine appointment. He stops again at the door and looks at me. Looks at my eyes. He asks me how I feel. I tell him I feel strong. I tell him about the burger and the bike. He says my blood work looks good. He looks at me again and tells me, “It is time for a change.”
He tells me this is no longer about survival, he says now I am in recovery. I can eat what I want, do whatever I feel capable of doing. He tells me to stay away from sick people, to gain weight and to get stronger. I ask if I am still restricted about what I could pick up. “Pick up what you want,” Mogilishetty says.
That day, for the first time since I left for the hospital I pick up Lucy. It feels like I had never done it before. It feels like I did it yesterday. Later I find Theo. He still lets me pick him up sometimes. Just before, he says: “Are you sure?” I am sure.
One month later, The Enquirer arranges a photograph of me and all the people who helped to take care of me at the University of Cincinnati Medical Center. Dr. Diwan and Dr. Mogilishetty are here. Dr. Govil and Dr. Cuffey. Crazy Kathy, Sweet Jane, Brian Lewis, the woman who called me to tell me I got a pancreas. People whose names I never even knew. People who took care of me when I was so sick I could not remember how well they treated me, but I know they did. I take Lucy with me because I want her to know them. All of them.
I am going to stand in front of them and show them that I am healthy. They are going to see what they have done with their medicine and their compassion. I am going to tell them how they changed me and made me better. That I believe in my future and that I am not afraid anymore.
I am going to thank them and I am not going to cry, because I am strong. I want them to be proud of me. And then, before I can say a word, I start to cry.
I tried again and I stopped. They all looked at me. Dr. Diwan says I cannot blame this on the medicine any more. I try again. I want them to know that they have changed everything for me. But I cannot do it.
I turn, instead, and introduce them to Lucy.