PART TWO

LIVING WITH LIVER DISEASE

Liver disease is horrible. It’s a destructive force that ravages the body and mind, and caused my wife to lose so much weight that she was virtually nothing but skin and bone toward the end of her life. I hesitated to rub her back or hug her too hard for fear of hurting her.

Then there’s the ascites, a malicious offshoot that causes fluid to accumulate in the abdomen and elsewhere in the body. My wife’s ascites was so bad the doctor actually joked about her carrying twins. Tanya’s only relief was going to the local emergency room to have it periodically drained. Several times doctors took as much as six liters (1.58 gallons) of fluid from her belly — they couldn’t drain too much for fear of causing her kidneys to shut down. And every time Tanya returned from being drained, we had to worry about leaks from the drainage holes. We tried to bandage them the best we could, but the leaks were persistent and seemed ripe for infection.

Then there were the false starts. While waiting in the transplant mill, we had three. The first time they took Tanya to the pre-op area at 5:30am, where we waited several hours until the surgeons returned to tell her the liver was too fibrous. The second time, Tanya was about to check out of the hospital after being treated for an infection. The nurse ran up to me in the hallway and told us to wait, that they might have a liver available. So we did, for seven hours, only to find out this particular liver was too fatty.

Tanya said, “Let’s go to Popeye’s.” So we did.

But the worst false start came after we received a phone call at 11:20pm on December 22nd telling us to get to the hospital. Apparently, an 18-year-old had overdosed and was brain dead. We were told they’d have the liver in house between 8:00 and 9:00am, and that Tanya would be in the operating room by 12:30pm.

Tanya prepped and ready for a liver transplant, December 23, 2015

We arrived at the hospital and checked in to the “liver floor” at 2:00am on December 23rd. Finally, we thought, the organ she needed would be available. But 9:00am came and went with no word. Then 12:30pm came and still no word. Despite the lack of updates, the liver team continued to prep Tanya as though the surgery would happen. They gave her fluids and prepared her emotionally by having the surgeon come in to explain what would happen in the operating room. The doctor told my wife this liver arrived just in time, because her health was spiraling: She was getting sicker. Still, we waited, past 5:00pm and then past 8:00pm. Finally, some time after 10:00pm, the liver team came in to say the organ was no good.

We were devastated.

That night, my wife insisted on leaving the hospital so she could be home for Christmas with the family. But on Christmas Eve, her ascites was so bad I had to take her to our local hospital in New Jersey to get drained. The doctors removed another 1.5 gallons of fluid from her belly. Afterward, Tanya talked to me about “spiraling” and told me again she didn’t want to die. Again, I reassured her she would be fine.

A FINE LINE BETWEEN HOPE AND DESPAIR

Waiting for someone else to die so your spouse can live is an awful position. But that’s exactly what we were doing, hoping to take advantage of someone else’s misfortune. It wasn’t until later we discovered New York State ranks 50th out of 50 in percentage of residents who are registered organ donors — plenty of livers, lungs and kidneys that could save lives go to waste.

We had a lovely Christmas. Tanya took her traditional place on the couch and watched the kids open their gifts. Friends stopped by and she was happy. But the week after Christmas was bad. Tanya’s condition worsened each day with no check-ins or calls from the liver center about a new organ. On the way to a routine blood test visit, she was so weak, she had to sit and rest by the elevators before riding up to the second floor.

She spent most of that week in bed. Then on Sunday, in the middle of the night, she couldn’t make it to the bathroom by herself.

It had been 11 days since the last transplant false alarm and it felt like they forgot about her. But after another blood test the next day, she was told to get to the New York-Presbyterian Emergency Room immediately. Her kidneys were failing.

The emergency room at NY-P is its own special circle of hell. Gurneys are everywhere: the hallways, the aisles and the “rooms,” which are about five feet wide and divided by curtains. Those who don’t get gurneys sit on hard chairs and wait. The cloud of sickness and disease is almost overwhelming—you want to wear a mask and wash your hands every time you touch something. And yet by some miracle, namely the place’s incredible staff, it functions. We were in the ER until 2:00am, when Tanya was transferred to a step-down room, which is between a regular room and the ICU. She was in so much pain she moaned the entire night, while a woman across the room shouted because she couldn’t understand why she was being restrained.

When morning finally came on January 5th, the doctor assured Tanya she was right where she needed to be. This was her “transplant admission.” Tanya was as sick as she would get, the doctor said, and she would not be leaving the hospital without a new liver. But no amount of seminars could have prepared us for what we faced over the next three weeks.

While I was at work, a friend who stayed with Tanya called to say she was being taken to the ICU. But when I returned to the hospital that night, she couldn’t speak — all she could do was grunt. I was told it was because of hepatic encephalopathy, which is the loss of brain function when a damaged liver doesn’t remove toxins from the blood. At 5:30am the following morning, doctors put in a breathing tube because they feared Tanya would choke on her own saliva.

And I was completely unprepared for what I found when they put her on dialysis. She had two long tubes coming out of her neck and running into the machine, which was purifying her blood.

My wife was in bad shape. Nurses were draining a lot fluid from her lungs, as she aspirated some vomit the previous day and had developed a lung infection. A nurse practitioner in the ICU told me she was very sick, and I should talk with our kids about their mother possibly not making it. I nearly freaked out. How was that possible? She was supposed to get a new liver, not die from an infection.

The next morning, our 19-year-old came with me to the hospital. He saw his mother, connected to a dialysis machine with tubes running into her neck, a breathing tube down her throat, a feeding tube in her nose, and all manner of IVs in what was left of her skinny little arms.

Tanya on breathing tube in ICU

That evening I returned with both boys to see her. Tanya was heavily sedated, but still managed to lift her head and open her eyes a few times when she heard our sons in the room. While I was telling the boys this was an encouraging sign, the nurse overheard me and said, “She’s been doing that all day.” I was livid. I was trying to give my kids some hope their mother would pull through this and she just shot me down. Later, I noticed our 14-year-old sitting on a chair in the room, a single tear running down his cheek. The memory still brings tears to my eyes.

The next day, we were told Tanya had to get better in the next 48 hours or the chances for a liver transplant were remote. Still, the doctor and social worker said my wife was right where they wanted her to be, and there were signs she was improving. She responded to a request, which meant she could still hear. It was a small sign, but I grasped at any improvements and breathed a sigh of relief.

LIFE & DEATH ROLLER COASTER

For three weeks, we went on the worst roller coaster ride ever. One day Tanya was transplant ready, then too sick the next.

After visiting Tanya one night, I had a conversation with my youngest, who said he didn’t want to see his mom the next day. I talked with him about the possibility his mom might not make it — it was one of the hardest things I’ve ever had to do — and that he should go see her whenever he had the chance. It’s extraordinarily difficult to watch your children react to a loved one in such a deteriorated state.

But the roller coaster continued, and Tanya continued to fight. Eventually, the nurses stepped down the oxygen levels, took her off blood pressure medicine, and lowered the sedation so she could respond to us more. The social worker said my wife had met half of the criteria needed to get her transplant. Tanya maintained a semi-awake state for a few days, with bouts of restlessness and aggravation due to the breathing tube. Each day seemed like another step closer to transplant, and I silently cheered her on.

But as the days passed, I grew more impatient. The social worker said doctors were pleased with Tanya’s progress, and that they were just looking for a window to do the transplant. But the waiting game was horrible, as I watched my wife swing between good days and bad days. From days where she was highly aware, answering questions, and very responsive to days where she developed infections, struggled to breathe, or tried to rip out IVs.

Liver disease is an experience I wouldn’t wish on anyone. It was emotionally and physically exhausting and I just wanted to make it stop. My wife was at death’s door and supposed to be at the top of the transplant list, but weeks later we were still waiting for an organ.