The following account was written by Linda Baker, former assistant to the editor of Word&Way. She agreed to tell her inspiring story of liver disease and subsequent liver transplant to our readers. During the months and years leading up to her transplant, Linda inspired many people with her faith and dependence upon God. She closed every e-mail message, note and letter with “In His hands.”
The telephone finally rang at 10:45 p.m. on Dec. 6, 2008, with a call we had been waiting on for a long time. On the other end of the line was the transplant coordinator from Nahzi Zuhdi Transplant Clinic informing us a donor organ was available. We needed to be at the hospital within the next hour.
With our bags already packed and in the car and our emotions in high gear, we made our way to Integris Baptist Hospital in Oklahoma City, hoping and praying this was the night that would bring the answer to so many prayers.
Our odyssey began in September 2001 while on a family vacation in South Carolina. A routine check of our answering machine back home revealed a message from my family physician regarding tests performed during a recent routine physical. Results from lab tests revealed elevated liver function numbers. Further testing was needed to determine the cause. Needless to say, the trip home was one of concern for the whole family.
Over the coming months, several tests were performed to either rule out — or rule in — the cause of my abnormal liver tests. One final test, in January 2002 at St. Louis University Hospital (SLUH), confirmed a very rare liver disease, Primary Sclerosing Cholangitis, or PSC. It is a disease that has no standard treatment and no cure, which means liver transplantation is the only option. Because the disease is so unpredictable, it was impossible for the doctors to give us any idea as to when a transplant would be needed. The answer was always “somewhere between five and 10 years.”
God’s guiding hand to Oklahoma
For the next four years, my husband, Steven, and I made several trips to St. Louis to have required, periodic tests done to check the progression of the disease. Just as we were getting used to the routine, a change in jobs by Steven sent us moving away from Missouri to the state of Oklahoma. We were very fortunate to be close to one of the premier transplantation hospitals in the country located at Integris Baptist Hospital, the Nazih Zudhi Transplant Institute. While we had excellent care during our time at SLUH, we were blessed to find a group of doctors and nurses that were among the best, in our opinion. We commented often on how we felt God had a big hand in guiding us to Oklahoma City.
We began a new routine of visits to Integris over the next couple of years until Steven noticed changes in my appearance that warranted a closer look by our hepatologist. The diagnosis was the PSC was accelerating more rapidly than expected and I needed to be placed on the waiting list for a transplant. Consequently, in late spring of 2007, I began a series of tests to check the condition of just about every organ in my body, along with my teeth and the density of my bones, plus a constant checking of my liver numbers through numerous blood tests. The tests are performed to determine whether you are a viable candidate for a transplant and placement on a list regulated by a national organization, UNOS (United Network for Organ Sharing). After all the tests, and what seemed like forever, I was finally placed on the list on Oct. 11, 2007.
Life on the organ transplant list
Placement on the list is regulated by a numerical score called MELD (Model End-Stage Liver Disease). My initial MELD score was 17, which placed us approximately ninth on the list. The higher the score, the higher you are on the list and closer to getting a transplant.
Now the real waiting began.
Over the next several months, we lived through many highs and lows that only daily prayer seemed to get us through at times. Because I was on the list, and due to a compromised immune system, we were not able to venture far from home. With new grandchildren and Steven’s job, which requires a lot of travel, we weren’t always able to do as we wished.
We were called in for a transplant in March 2008, but the donated organ wasn’t good when it arrived. Tests done during that period indicated a spot on my lung, which subsequently turned out to be nothing of importance but still had to be checked out before a transplant could be performed. Further tests from that indicated a major infection in my spine, which ultimately kicked me off the transplant list. We spent the next six weeks doing an intravenous regiment of antibiotics followed by six weeks of oral antibiotics to kill the infection.
Sandwiched in between was a fall that caused a fractured sternum that led to several days in the hospital and a skilled nursing facility. But through it all, God continued to watch over and bless us as we faced each new crisis and stood with us during our battles as He said He would.
Need for a new liver becomes critical
In July, I was able to get back on the list but several other transplant patients were now in front of me. As the waiting continued, my health began to rapidly deteriorate. Weight loss, jaundiced skin and eyes, muscle weakness and reduced mental acuity all manifested themselves quite rapidly during the latter part of summer and early fall. Steven’s concern that I was not going to make it to my next doctor’s appointment took us to the emergency room in mid-November. Upon admittance to the hospital, it was determined that a transplant was needed sooner rather than later because my MELD score had jumped to 24. Once discharged from the hospital, the wait lasted only three more weeks before the call finally came.
While the surgery was a success, I had to deal with other problems while in the hospital. I developed pneumonia and an intestinal infection, and had a partial lung collapse that caused my stay to be longer than usual. If you followed my escapades on www.caringbridge.com, I’m sure you remember all the descriptive details of my hospital stay, thanks to my husband. Earlier this year, on Feb. 9, I was released from the hospital after a nine-week stay.
Deep gratitude for the gift of life
As a good friend once told me, “You married well, Linda.” Steven has been my rock throughout this ordeal. He was there with me every step of the way, even when I didn’t like his “tough love” approach. Part of the journey was as difficult for him as me, maybe even more difficult.
I also had many people constantly praying for us. Many of these people we will never know personally, but we are indeed grateful for their support. Our family support was wonderful…our sons and their families, parents and siblings, and church family all provided us with the support and caring we needed while I recovered. My recovery has been a miracle and all tests for liver function have been normal since the transplant.
Somewhere in Oklahoma, a family made a decision to give life, my life. We hope we have the opportunity to meet this family someday and to thank them personally for their sacrifice. There are currently many people, young and old, waiting on transplant lists, hoping and praying for a chance at life. Unfortunately, many will die due to a lack of donors.
Electing to be an organ donor is major decision that each person and family needs to make. Please pray for that decision in your life and be sure to update your driver’s license should you choose to be a donor. For more information about organ donation and transplantation, please visit: www.unos.org.