Monday, October 5, 2015
This is the abridged story of my family's two-year journey to a successful liver transplant for our mother. In the months leading up to October 2013, I would call my mom in Colorado from my home in New York. No matter what time of day it was, my mom would sound like she was just waking up. I would ask her if she was sleeping and she would deny it.
In November 2013, my mom started mentioning that she was putting on “weight”. So much weight in fact that she told me she could no longer fit in her Audi TT, wear her pants, or tie her shoes! Mom had always been holistic in her approach to health; she preferred a more natural route. So when I questioned why she wasn’t going to a doctor, she told me she was seeing a chiropractor. A chiropractor? As I grew more and more concerned for her, she would tell me to not share my concerns with anyone. With each conversation more glimpses of what she was going through came to light: extreme fatigue, a swollen abdomen, legs & feet, the inability to walk.
I carried this burden with me, silently, until one day when I ran into my sister-in-law, Joan, at the grocery store. Joan is a R.N. and when she asked me how my mom was doing, a routine question, I just broke down in tears. I shared with her my mom’s condition and my grave concern. Immediately she directed me to do anything and everything I could to get my mom to a hospital. Hearing Joan’s concern, made mom’s condition real. I went home and used Google to research all my mom’s symptoms and 'Liver Cirrhosis' was all over the screen. I called mom and asked if her chiropractor had mentioned cirrhosis of the liver; she hung up on me.
A week before Christmas, my mom woke up because she couldn’t breath. For the first time since her symptoms began, she took action and drove herself to the hospital 2 blocks from her home and was immediately admitted. The doctors diagnosed mom with stage-four Primary Biliary Cirrhosis (PBC). After opening our Christmas gifts at home in NY, I left my three kids and husband and flew to be with her.
I spent the two weeks of the holiday with mom. We set up doctor’s appointments and enjoyed each other’s company. Mom started seeing an actual doctor for the first time in fourteen years. There were many thoughts between us about the severity of her health issues and how she was going to get through it. Mom's attitude never waivered. She was determined to live for her kids and grandkids and refused to accept any other prognosis. Even when her body was shutting down and her blood pressure was dangerously low, she remained positive.
In February 2014, my husband, kids and I took our yearly ski vacation to Colorado. While my husband and children were on the slopes I was attending doctor’s appointments with mom. I asked her new doctor to 'give it to me straight' and to tell me what exactly we were facing. He told me that mom had 6-18 months to live.
Just days into our vacation, mom's hemoglobin count was shockingly low at five and she was admitted into Boulder Community Hospital. When it was time for us to return to NY, mom was still hospitalized. My husband, Mark and my oldest son, Mitchel took their return flight home and my two-younger children and I stayed in Colorado. I instantly became my mother's voice, her caretaker. I spent endless hours talking to doctors and nurses. I spent hours at her bedside to comfort her. My sister would come get the kids after work each day to give them a break from the chaos. Those eighteen days in the hospital were a roller-coaster ride. It seemed like each day the doctors would tell us she wouldn’t make it through the night. She didn't just have PBC anymore, the side effects started to literally kill her. She had continual internal bleeding in her distressed intestines, she was experiencing high spikes of ammonia levels in her blood, which made her act out of her mind, and she was retaining over 100 pounds of fluid.
Even though the doctors told us their opinion on her time left on earth and also thought her chances of being transplanted were slim due to her age of sixty-five. We took a chance and set up an appointment with the liver transplant team at Porter Adventist Hospital in Denver. They discharged her from Boulder Community so she could go through the required 2-day testing at Porter. We were surprised and excited that they accepted mom on their Colorado region transplant list!
The kids and I stayed in Boulder with mom for the following three months. Mom couldn’t drive and her appointments and procedures were getting more and more frequent. She had too many blood transfusions to count! She had an endoscopic procedure to stall her internal bleeding done almost twice a month! That June, my cousin, Jill came out from Illinois to care for mom and give me a break. This allowed the kids and I to go home and see my husband and son. It was awesome to be back in our house and all together again, but within two weeks mom went into septic shock and had to be hospitalized again; I returned to Colorado with my young ones.
I didn’t know what the future held or when I was going to be able to go back home. My new life as her caregiver was as uncertain as her life as a terminal patient. The kids and I made the best of our time anyway we could. My brother and sister would take care of mom on the weekends and the kids and I would spend time with our friends in the area. But the grim outlook into mom's recovery was haunting. It's nearly impossible to lead a normal life away from your home while dealing with a dying parent.
Mom's condition got worse by the day. They tried to place a stint in her liver to relieve the pressure on her intestines but it failed. The doctors told us, they had never seen a case like hers and didn’t know what else do. She was still bleeding internally and they were becoming uncertain if a liver transplant would even help anymore. On top of all that, the team of doctors broke the news to us that she would likely not live long enough to see a transplant in Colorado. This was obviously devastating to all of us, all of us except mom! She was steadfast in her belief that everything was going to be okay. She said any bad news she heard was "just noise" and that she was going to get her new liver and live for 25 more years! Mom believed this with all of her heart.
While we were waiting to get mom’s blood drawn one day, I sparked a conversation with a couple in the waiting room. They shared their story how the husband received his new liver in Atlanta, GA. They told us that the wait time for liver transplants were shorter in the southern states.
My mom would repeat over and over how she wanted to live, so that’s the direction we headed. I looked up the hospital in Atlanta that the couple had told me about and I read that they didn’t accept patients with internal bleeding. As I continued to search for transplant centers in the south, I thought about how my favorite bluegrass band, Balsam Range, had been nominated for a bunch of awards through the IBMA. The awards ceremony, which takes place in October in Raleigh, NC, was an event my mom attended every year before she became ill. Just for fun I searched the Internet for transplant centers in North Carolina in the hopes to combine the appointments needed to get on a transplant list with a chance to attend the music ceremony. How awesome would it be if mom and I could look forward to something we both wanted to do?
The Carolinas Medical Center in Charlotte popped up on my screen. Internal bleeding was listed as the number one reason to get a transplant. I called to inquire about setting up the appointments necessary to get mom on their transplant list and tried to schedule them around the time of the IBMA's. I was able to schedule the necessary appointments, but making it to Raleigh for the IMBAs was not going to be possible. Mom was becoming weaker and weaker and an event as big as IBMA was just going to be too much.
After having my family live apart for six months, mom and I decided it was best that she move in with me, in LaFayette, NY. We packed up her house, put it up for rent and in August 2014 we all were together in my home.
In October it was time to fly to Charlotte for our first appointment with their transplant team. The night before in the hotel both mom and I were feeling empty. We were at each other’s throats because we were questioning why we were even here in North Carolina. Mom described it as ‘the blind leading the blind’. It was like we were playing doctor because neither of us knew what the hell we were doing, we uprooted her from her home, moved her 2000 miles away and now were chasing a dream.
When her new doctor entered the room, he sat down across from us. His first question was, “Why did you choose our transplant center here?” We both were coy and then I replied embarrassed, “I was following a bluegrass band.” What he said to us next could only be the work of God. He said, “Well you came to the right place. Here in North Carolina we award MELD points to patients that have historically low sodium levels like you have. We can get you a new liver in a few weeks.” WHAT?!?!
See mom’s MELD (Model for End-Stage Liver Disease) score had always been between 8-14. In the state of Colorado and also in New York State they are short on donors, so patients have a MELD score of 30-33 (death-bed sick) before they’re at the top of the list and can receive a life saving liver transplant. In the southern states they are transplanting patients with a MELD score around 22. In North Carolina they realize that although a MELD score can calculate low some patients, like my mom, have all the symptoms of stage four liver cirrhosis and if a patient has a historically low sodium level they grant you MELD score points up to 22, putting you at the top of their list. Who knew?
Elated, we left his office filled with hope, joy, and pure shock! We would return to New York and begin packing our lives up again. We needed to be local to be able to be at the hospital within hours of getting the call that they had a donor liver for her. Mom rented a furnished apartment in Morrisville, NC and my two younger kids and I left Mark and Mitchel once again and drove to NC with mom.
Once in North Carolina, we had to get acquainted with the area. It was tough being there as we didn’t know anyone. At the beginning of December we looked forward to seeing my cousin Molly Tuttle open for Balsam Range (the band that lead us to NC originally) in their hometown of Canton, NC.
Back in July when I saw Balsam Range in Lyons, Colorado, one of the band members had asked when they’d see us again. At that time, I didn’t know my mom would even be seeking a new transplant center. I replied to him, “I’ll see you with Molly in December in North Carolina.” Why would I have said that? I had no intention of traveling before Christmas; at least I didn't think so! Our drive up the Blue Mountains to their show was surreal. I had spoken my plans into fruition six months prior. We took it as a sign from God that we were exactly where we needed to be.
Time seemed to stand still for the next few weeks. We were told mom was at the top of the list, but it was hard not to be discouraged. The kids and I missed our family and our normal lives. Mitchel and Mark came to us for Christmas, but after that things just went back to our 'new' norm. The only time I could get mom out of the house was to go see Balsam Range. We were able to see them a total of three more times until February 2nd when the phone rang and we got the news the hospital had a donor.
It had only been nine weeks we were in North Carolina and mom received a healthy young liver from a generous 20-year-old donor. Everyone has a journey. You must decide to walk it. You must trust that God will guide you each step of the way. He will use people as vessels and give you signs to follow. Don’t give up.
I dedicate my story to the Caregivers who get their loved ones from sickness to health. I stand with you. Also, to the Coalition for Organ Distribution Equality (CODE), who are advocating for transplant equity – ensuring that where you live does not determine whether you live or die waiting for an organ.
Lastly, please celebrate with me, that just a year later, Julia’s Grandma Got a Liver! #dontwasteyourinsides