By Kendra Bobowick

David Anderson’s favorite new bumper sticker says, “Don’t Bring Your Organs to Heaven With You, God Knows We Need Them Here.”

His “prayer” took much time and struggle to answer.

His ordeal with primary sclerosing cholangitis and eventual liver transplant began subtly. He just felt tired, he said.

Certain that age and not health was to blame, Mr Anderson said, “I have been a runner for years and noticed that since I turned 50, I was very fatigued.” He is now 59.

Regardless of stamina and training, he “would hit a wall” when he was running. Fatigue would set in. He also had to admit that other activities would tire him unexpectedly.

Since he left construction and now is a nature photographer, he often displays and sells prints at craft fairs in the region. His weariness encroached on his work. First his hobby, and now his livelihood were becoming compromised.

“Even at the shows as I was lugging things into or out of the truck, I noticed that I was very fatigued,” Mr Anderson said.

Today, he looks back at the last decade and points to markers in his journey leading to a life-saving liver transplant. He received a liver roughly four weeks ago. His doctor indicated to him that he may have had the liver condition for several years without seeing symptoms.

Inevitably, the symptoms did occur.

“I realized there was a serious problem about three years ago,” he said, when after an ultrasound and scans, his doctor told him he “saw something on his pancreas.”

The news hit him.

“I panicked,” Mr Anderson said.

Initially, his first of many medical opinions concluded that he may have pancreatic cancer. “I thought, wow, is this what people are afraid of, finding out they are going to die?”

Seeking medical attention in Danbury, he met the doctor that would soon make the life-saving and correct diagnosis. Dr Steven Brandwein, MD, determined that Mr Anderson was afflicted with primary sclerosing cholangitis. Other symptoms soon became manifest.

“A couple months later, I started itching like crazy,” he said. Mr Anderson’s liver bile ducts were clogged with “many small blockages.”

When the proper diagnosis came “a little less than two years ago, then I knew why I was getting tired,” he said.

His inability to run as far and the difficulty in doing his photography now had a weighty medical reason. With his hands splayed and palms up, he said he “resigned himself” to the news. Mr Anderson had already mentally prepared himself for a darker scenario, he explained, saying the prospect of cancer “made me reconcile with my mortality, which everyone has to do at some point.”

When his diagnosis changed, he maintained a cautious state of mind.

“I didn’t get my expectations up, and I didn’t want to think about the worst or the best,” he said.

With the operation now behind him, he explained that the transplant has “gone extremely well so far, but you’re not really out of the woods until about a year later.”

An Organ Recipient

“Getting on the list is a really big deal,” Mr Anderson said. He also understands the anxieties many experience when they “fear they will die or have complications before even getting on the list,” he said.

Dr Brandwein used stents to help drain fluids, and Mr Anderson was consequently “hospitalized five times for infections, which actually helped me,” he said. The stents and infections bumped him up on the donor list.

Yet he remained practical, saying, “I thought I would have to get really, really sick, but all of a sudden, I was within weeks of receiving a transplant.”

He got himself a cell phone specifically so the hospital could reach him. The operation that eventually took place at the NYU Medical Center was, however, preceded by two false alarms.

“The first time I got a call I found out I was second on the list [for that particular organ], but I never got the second call,” he said. Mr Anderson explained that the hospital had him “on-call” in the event that the first recipient’s situation changed.

The second time he received a call, he “got all the way to the hospital, into the ICU when they decided that the liver was too big,” he said.

Mr Anderson’s third call turned out to be the right call. “They told me to get to the hospital,” he said.

A friend, whom he now can’t speak about without emotion seeping through, drove him halfway to NYU before traffic interfered, and the friends opted for a train. Mr Anderson’s friend, Don Bryant, said goodbye to him at the station.

Looking back at his frantic trip into New York City, Mr Anderson said, “In retrospect I had plenty of time, but I didn’t want to miss my opportunity.”

When he exited the train, “my adrenaline was so pumped that I ran,” he said. His sister, Gail Anderson, met him at the hospital.

As he thought back to the day of his operation, lines of concern marked his face as he described the vivid trip to the operating room.

“The experience was surreal,” he said. “I was going down this long, empty hallway and into a room.” His next recollections are postoperative.

“I woke up, and realized that all my efforts to stay in shape paid off,” Mr Anderson said. His breathing tubes were removed because he could quickly breathe on his own, he explained. He also was comforted to know that his disease “has a very good survival rate,” he said.

But frightening news greeted the Andersons after the surgery.

“The surgeon told my sister that the liver was in bad shape and looked cancerous,” Mr Andersons said. Testing proved his liver was cancer-free, however.

He recalls the days following his transplant with a renewed appreciation for his sister, and offers a glimpse of his sense of humor saying, “It was amazing to have that surgery and be up and walking in three days. It’s amazing that my sister, who cooked and fed me, within a week could sleep late when I made her breakfast.”

Surviving To Tell The Tale

Mr Anderson spent at least a year in part wondering if he had pancreatic cancer, which was soon ruled out, and then waiting for a definite diagnosis.

He said, “It was a long time for [doctors] to decide what was wrong with me. Dr Brandwein was my best bet.” The odds were daunting, nonetheless. “When I learned the doctor’s suspicions, I had time to adjust but things happened quickly,” he said.

His disease has no known cure, he explained. Mr Anderson said, “[Dr Brandwein] told me that we don’t have any treatment and that the only thing that’s going to save me is a transplant.”

Despite his situation, Mr Anderson never lost hope. He said, “I knew I had to have the transplant so I resigned myself and just decided that it’s what I had to do if I wanted to live. I just had to put my faith in medical science.”

Now, just four weeks after his transplant, Mr Anderson said he is “just itching to get back outdoors and do my photography again and to do shows by next summer.”

He also struggled to express his feelings for his friends.

“I can’t believe how good my friends have been, and my sister,” he said. Pausing to steady his voice, Mr Anderson continued, “One friend, Dianne, I met 13 years ago, she is so special, she came over every day. She paid my bills. She and her husband even visited me in New York.”

Folding his hands and taking a moment before he went on, Mr Anderson then said, “Other people have helped me financially, I have also gotten cards from people I had not heard from in years.”

He also spoke of his housemate, Robbie Dubroff, who he referred to affectionately as his “communication center.” Ms Dubroff handled many of his calls and correspondence while he was ill, he said. “And Carol, she sold some of my calendars for me, really helping me out.”

Thinking of the efforts of his sister and friends, he said, “You can’t underestimate your friends. There is so much power in friendship.”

Lastly, Mr Anderson contemplated his donor. Who was the donor? Would the family want to reach him? Would he ever like to know about this person?

He said, “I am not obsessed with finding my donor, if it doesn’t happen, it doesn’t happen.”

Inquiries must be made through the donation bank, and after a time inquiries are forwarded to the donor family, which can choose whether to contact the recipient.

“They may or may not reply, and you have to respect that and respect their privacy,” he said.

The transplant’s aftermath has him on many medications, some of which are designed to prevent his body from rejecting the new liver.

“Some people look at me and think, ‘The poor guy, look at all those pills,’ but it’s nothing, nothing compared to having a life-threatening illness,” he said. Mr Anderson is now taking more than 20 pills each day.

Although some of his prescriptions are meant to prevent rejection, he said, “Everyone’s body at some point rejects” the transplant. However, he also is informed by his doctors that he is “doing as well as could be hoped, and should continue to do well. I was told that if I do well in the beginning, I will do well all along.”

Placing importance on his attitude as well as his medication, Mr Anderson said, “The doctor told me that you have to be your own advocate. You’re the one going through this and no one will look out for you like you.”

Primary Sclorosing Cholangitis

According to liverfoundation.org, primary sclerosing cholangitis, or PSC is a disease in which the bile ducts inside and outside the liver become narrowed from inflammation and scarring. Bile therefore builds up and can result in a damaged liver. The exact cause of PSC is not known, but genetic and immunologic factors appear to play a role.

PSC is considered a rare disease, but approximately 70 percent of patients have associated inflammatory bowel disease, particularly ulcerative colitis. The disease’s course is unpredictable, but for most is slowly progressive. Many individuals have no symptoms and the disease is detected because of abnormal lab test results. Liver failure may occur after 7–15 years or possibly longer. There is currently no specific treatment.

Transplant recipients have about an 87 percent one-year and 77 percent three-or-more-year survival rate and a good quality of life after recovery.