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From MELD to Marathons

Maksim is one of nine individuals who will be running on the Chris Klug Foundation’s charity team in the 2018 TCS New York City Marathon on Sunday, November 4th.

“They must have mixed up the lab results,” said Annabella, reading the letter that had just come in the mail. A month earlier, my wife, Annabella, and I applied for life insurance and completed the required medical exams. The letter was from the insurance company. It was denying me coverage because my bloodwork had shown I had elevated liver enzymes—a sign of a compromised liver. I went to see a gastroenterologist and learned that I also had high cholesterol, which is another sign of a liver issue. At the time, I didn’t let this faze me and, after several more visits to the gastroenterologist, I stopped seeing him altogether. In my mind, I didn’t have any problems that warranted seeing a doctor.

Growing up in a small Russian town where cross-country skiing and outdoor activities are a lifestyle, I had never experienced anything more complicated than the common cold. I tended to keep my distance from doctors and medicine in general. Annabella was not happy about my decision to stop going to the doctor. Unlike me, she was concerned about my abnormal lab results and wanted an explanation.

Several years later, I experienced a sudden onset of jaundice. I went through extensive tests and bloodwork again and received a call from the doctor that my lab results were normal. I requested to see the results and Annabella turned to the Internet in order to further analyze and understand them on her own. It became evident that the results were anything but normal. From Annabella’s research, it looked like what I had was primary biliary cholangitis, or PBC. PBC is a chronic, progressive disease in which the bile ducts in the liver are destroyed. When the bile ducts are damaged, bile builds up in the liver and can lead to irreversible scarring and damage. PBC is an autoimmune disease, meaning that the body’s immune system mistakenly attacks healthy cells and tissue. It is also quite rare, affecting 4-15 people out of a million.

Doctors quickly confirmed that Annabella was right: I did have PBC and it had already progressed into the middle stage. PBC progresses slowly and eventually leads to cirrhosis of the liver (chronic liver failure). In my head though, this was in the distant future. I knew that I would need a liver transplant—the only known cure for PBC is a new liver—but I had no hopes for it.

The disease progressed over the next several years. It started to get worse in 2013 when I became unresponsive to my Ursodiol pills, the only treatment available at the time. I began experiencing strong onsets of fatigue, which forced me to stop driving as I was having trouble staying awake at the wheel. By the fall of that year, I had to stop running. By the end of the year, I could barely walk across the street. My muscles were gone and my body was full of fluid. The shortness of breath made it difficult to talk. The hospital stays were happening more frequently and lasting longer each time. In February 2014, I was told that I had cirrhosis of the liver and I was put on the transplant waiting list.

  

Five months after learning about my condition, I was admitted to the intensive care unit with esophageal varices bleeding, resulting from a build-up of blood pressure. The blood flow through the liver was being cut-off by its scarring. Doctors had a hard time stopping the bleeding because of my low platelet count—the result of my failing liver. They were afraid of losing me. After transfusing ten units of blood, the doctors managed to stop the bleeding. They conducted a TIPS procedure to allow the built-up blood to pass through my liver, by way of a shunt. This, in turn, led to hepatic encephalopathy, meaning my liver was so damaged, it couldn’t remove the toxins from my blood. These toxins were reaching my brain, which caused me to lose partial brain function. All this time in the ICU, I was unconscious with Annabella by my side. Many friends came to visit me at that time, after learning what happened. Annabella’s face was the first thing I saw after coming back to reality. I returned back home, where I was greeted by my dog, who was so happy I was back. However, I knew my days were still limited. I felt guilty because I knew it was inevitable and I was totally unprepared—which is typical of me. My mother and brother were in Russia and, until this moment, only my brother knew how bad I was. We kept my true condition a secret from my mom. I kept feeling that me dying was an easy exit and I was leaving everyone, especially Annabella, to deal with all the distress in the aftermath.

The news of an available liver was overwhelming. I couldn’t believe it. I was afraid that I was too weak for surgery and had real concerns that it was a fluke—that the organ would not be a match after all. However, I was cleared for surgery and the liver was a perfect match. Three days later, I left the hospital a new man.

I was eager to return to my life—to get back into running and exercising—but the doctors strongly insisted that I avoid any strenuous activity for six months. Two years later, I attended my first Transplant Games of America. I am now joining the Chris Klug Foundation team in running the 2018 TCS New York City Marathon. Chris Klug’s book, “To the Edge and Back”, was the first book I read after my transplant. It gave me a reason to believe in returning to a normal life post-transplant. Looking back, I don’t know where I would be if not for Annabella, her support, and her insistence to undergo all the testing and check-ups. Through her and through my transplant experience, I learned that there is no problem too small when it comes to one’s health.

    

I can’t thank my donor family enough for making that hard decision to donate their loved one’s organs at such a time of despair. I am alive because of the hard work and skill of my doctors and nurses but, most of all, because of the gift of life that was given to me by my donor and donor’s family.

*****

The Chris Klug Foundation’s charity team will be running in the 2018 TCS NYC Marathon this Sunday, November 4th. To review this year’s team of nine runners and/or donate to the foundation on behalf of a team member, please visit www.crowdrise.com/chris-klug-foundation-2018.

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