In Your Area
Joe Rosario was diagnosed with cirrhosis of the liver in 2004. This is his story about the battle he fought, and won, against liver disease.
In 2003, I began experiencing extreme fatigue. I would park my car at work and struggle to get to my desk. I was bloated and pale but believed myself to be a little out of shape; never did I attribute these signs and symptoms to being ill. I joined a local gym to get back in shape. However, instead of getting stronger, I was becoming more fatigued. I was going backwards, not forwards. I realized there was something seriously wrong with me and I made an appointment with my doctor.
My doctor put me through a series of tests—a stress test for my heart (which I failed) and blood tests. I went back to work to wait for the results. I was convinced I had a heart condition. A short hour and a half later, my doctor called to inform me I was dangerously anemic. My red blood cell count was incredibly low and I was sent to Maine Medical Center (MMC) for a blood transfusion. The mystery remained, what had caused me to lose blood in the first place?
I was referred to an internal medicine specialist for even more testing. I was shocked to learn I had cirrhosis of the liver. I could not understand how this could be, I don’t even drink alcohol! I was informed I would need a liver transplant in the future but probably not for another ten years. My doctor monitored me closely but my condition continued to deteriorate.
In August of 2004, I woke up feeling very nauseous and began vomiting a lot of blood. I was bleeding internally again. I returned to MMC and learned that I had developed esophageal varices. Esophageal varices occur when blood flow through the liver is reduced due to the scarring, or cirrhosis, resulting in increased blood through the veins of the esophagus. The extra blood flow causes the veins to balloon and possibly break, leading to heavy bleeding. The doctors performed a procedure to band the veins and arteries in the hopes of preventing further bleeding. I spent a week in the ICU, receiving multiple blood, plasma, and platelet transfusions. Finally, I was discharged with new prescription and informed that I would need endoscopies every three months to monitor the veins in my esophagus.
Throughout 2005, my health remained relatively stable. Unfortunately, the plant I worked in for 28 years was shutdown. The timing could not have been worse: I found myself facing unemployment and the loss of insurance all while having a daughter in college and battling liver disease. I began searching for a new job. During this time, my wife noted I had times where I was “loopy.” I learned that I was experiencing hepatic encephalopathy (HE) as a result of my liver failure. HE occurs when ammonia levels increase due to lack of liver function. The ammonia poisons the brain leading to personality or mood changes, mental confusion similar to dementia, increasing fatigue, and possible coma.
Finally, in the beginning of 2006, I was offered a job and was somehow able to pass the physical. However, on March 31, I began to show signs of internal bleeding. I went to the emergency room at MMC and my worst fears were confirmed: I was bleeding again but this time in my stomach and there was no way to band the veins or arteries. The doctor’s only option was to perform a TIPS procedure—they would create a tunnel through my liver in order to connect my portal vein (carries blood from digestive organs to liver) to one of my hepatic veins (carries blood away from the liver back to the heart). The procedure was a success and saved my life. While the blood would now flow through my liver, my liver would still not be able to remove toxins from my blood. My disease had progressed to the end stage and I would need a transplant sooner rather than later.
I was now faced with a very important decision: there is no liver transplant center in Maine so my transplant would need to be done out of state. My doctor explained to me what the process of waiting for a liver would be; I would be given a MELD score (Model for End-stage Liver Disease) to track how sick I was and thus how badly I needed a transplant. He then explained how the country was divided into different regions for organ allocation, each with its own list. While I could select any region, it was with the knowledge that some regions experience a much longer wait time due to organ availability. For example, in Florida they transplant people with a MELD score of 16 to 18 while in Massachusetts, the typical MELD score at time of surgery is 27 to 30. Another consideration was that not all transplant centers are equal in terms of success rates. Considering all the factors, my doctor and I decided that Lahey Hospital and Medical Center in Burlington, MA would be my best option. This was the beginning to another long leg of my journey.
Following my initial appointment, I underwent a battery of tests: liver scans, biopsies, MRIs, and a lot of blood work. I had to meet with a psychiatrist, financial advisor, social worker, doctors and surgeons. Thankfully, I was accepted into the program and placed on the transplant list. The staff at Lahey was incredibly supportive. We set up a meeting with my family to discuss what to expect before, during, and after transplant. We also discussed the option of live liver donation. A live liver donation means they take about 60% of a healthy person’s liver, place it in the person who is ill, and both portions will regenerate back to full, normal sized livers in each the donor and the recipient. While there are risks to both parties in a live donation, Lahey’s success rate is high (93%), a portion of people do die while waiting for a transplant (25%), and a live donor transplant can be performed sooner, while the recipient is still in good health, versus waiting on the list.
I was blessed by an outpouring of support from family and friends who were willing to be my live donor. My donor would have to be in good health, approximately the same size and weight as myself, and match my blood type. Any potential donor would need to go through a battery of tests themselves. It was decided we would explore the avenue of live donation as a possibility. My health was deteriorating rapidly—I was becoming increasingly fatigued, forgetful, and was often incoherent as a result of my HE.
In September, I was diagnosed with a low level grade of skin cancer on my lip. This would need to be removed before any transplant could occur. A few months later, I had the cancer removed. During all of this, my brother, Jim, determined he was going to be my donor. Although I had initially agreed to do a live donor transplant, I struggled with the idea of putting my brother and his family through all of this. That Christmas, when it had been decided he would be my donor, I approached his wife and kids individually and assured them I would completely understand if they were opposed to Jim donating a portion of his liver to me. They all replied “if the situation was reversed, you would do the same thing for him.”
In early 2007, Jim called me and informed me that he was officially approved to be my donor. After multiple meetings with the transplant team, surgery was schedule for April 18th. I was beginning to seriously doubt going through with the live donor transplant. Two weeks before my scheduled surgery, I talked to my doctors about postponing the transplant. This, they said, would be a mistake, possibly a fatal one, so I decided to stick with the plan.
The morning of Wednesday, April 18th arrived and my wife, children, and I met my brother, his family, our parents, brothers, sisters, and other family members at Lahey. It was incredible to see all of them together and to feel their support. While my brother and I prepped for surgery, I realized just what a gift he was giving me, the gift of life. That night, my family was finally allowed to see me, much to their relief. Just as my wife was returning to her hotel to get some much needed rest, she received a call saying I had started to bleed internally. The next morning they located the source of the bleeding and were able to stop it.
After a few days in the ICU, I was transferred to a regular room to begin my recovery. I was able to walk down the hall to visit my brother. He was doing fine, already lobbying for his discharge home. I thought I would be joining him in no time. As the days passed, and the doctors continued to delay my release, I began to realize something was wrong. I was not growing stronger, but weaker; even brushing my teeth exhausted me.
On May 10th, the doctors informed my wife and me that I would need a second transplant. They were putting me back on the list. I told them I was not ready to die and to do whatever they needed in order to save my life. I asked them what my MELD score was. I was shocked to find it was 36—not only had it almost doubled since being admitted to Lahey in April, but I knew if I reached 40 I would be too sick for the doctors to save. This was my worst moment. I did not think I was ever going home.
I asked my wife to make sure my brother knew this was not his fault. I grieved to her that I might see neither our son’s wedding nor our daughter’s graduation; I mourned over the idea that I would never know any of my grandchildren. My family helped me realize I needed to adopt a more positive attitude otherwise my worst fears would come true. The next day, I was scheduled for an endoscopy as my doctors suspected I may be bleeding again. During the endoscopy, I started to cough blood which then entered my lungs. I was put into a medically induced coma and placed back in the ICU. Nothing could be done other than hope and pray a liver would become available. Time was running out, but still nobody gave up hope.
On May 14th, the medical staff told my family they had a liver for me and I would be transplanted that evening. I can only imagine how difficult all of this must have been for my family. Four days later, I finally woke up. I remember waking in the middle of the night and hearing Jerry Remy, the Boston Red Sox announcer, talking about a “mother’s day miracle.” Having no idea what that was about, I immediately went back to sleep. The next day, I learned the Red Sox had a miracle win on mother’s day. Later, I learned that my donor was a 56-year-old mother of five and grandmother of four. She had died unexpectedly on mother’s day. She too was a big Red Sox fan. She was my mother’s day miracle!
My new liver started working immediately. I was soon transferred back to a regular floor with the hopes of soon going home. My wish came true on May 25th. I didn’t care I was going home with a feeding tube and tubes still protruding from my stomach. The only thing that mattered was that I was going home.
Since my transplant, I saw my son’s wedding, celebrated my 30th anniversary with my wife, watched my daughter graduate from college, and even participated in the Transplant Olympics this past July. I am so thankful for the gifts of life I was given—from my brother sacrificing a portion of his own liver, to the countless units of blood and platelets I received, to my mother’s day miracle which saved my life. I cannot begin to express how grateful I am for all the hard work of my transplant team and the entire medical staff.
If you are interested in sharing your story of living with liver disease in our next patient spotlight, please contact Lindsay Ventura, Community Outreach and Education Manager, at firstname.lastname@example.org.