Organ donation is not something the average person wants to think about. In fact, it is a subject that is avoided by many, and totally ignored by most.
It was much the same with Mona Daniel of Van Buren prior to her life-saving liver transplant on Jan. 23, 2010. She admits that she had never thought much about organ donation, and in fact the subject bothered her.
“Now that I am an organ recipient and have become more educated about it, I see it completely differently,” she said.
The Donate Life America organization designates each April as Donate Life Month in an effort to educate the public and help clear up many of the myths and misconceptions surrounding organ and tissue donation.
The goal of this month-long awareness campaign is to emphasize the message that each individual has the potential to make life possible by registering as an organ and tissue donor and to celebrate those who have saved lives through the gift of donation.
This year’s theme is based around American author and poet Maya Angelou’s quote, “Be a rainbow in someone else’s cloud.” Just as a rainbow provides optimism following a storm, organ donation can provide the means to bring comfort to one family in mourning knowing their gift is bringing healing to another.
Having just celebrated the eighth anniversary of her successful transplant, Mona feels extremely blessed that the gift of life was made available to her through the generosity of her donor who took the time to register.
Even though 95 percent of Americans say they are in favor of organ donation, Donate Life America statistics show that only 54 percent actually make the next step toward registering as such.
Becoming a donor is a very easy process and can be done when a person renews their driver’s license, or by registering online at www.donatelifearkansas.org.
Over 34,000 transplants were performed in the United States during 2017, and over 100,000 people are currently on the waiting list to receive organs according to statistics provided by the United Network For Organ Sharing (UNOS) and the Arkansas Regional Organ Recovery Agency (ARORA).
Mona, who has become an advocate for organ donation since her own transplant, pointed out that statistics show that on average, every 16 minutes someone is added to the national transplant waiting list, and sadly one third of those will die simply because there is no organ available to save their life.
“I had no idea how many lives can be saved by just one donor,” she said.
According to ARORA, a single organ donor can provide a heart, liver, two kidneys, two lungs, and pancreas. Tissues that can be donated include the cornea/eye, bone, skin, cartilage, ligaments, veins, and heart valves.
“This was the only option for my disease,” she pointed out, “and if I had not received the liver, I would have just had to live with the disease until it killed me.”
Mona’s journey to her transplant began in the latter months of 2008 when she began experiencing pain and discomfort in her abdominal region. She didn’t think too much about it at first and continued her busy schedule, juggling the demands of a full time job and her role as a single mom to two active teenagers.
When February of 2009 rolled around and the pain was still bothersome, she mentioned it to Dr. David McClanahan during her yearly checkup, who sent her for a CT scan.
She learned that there were “spots” on her liver and was referred to a gastroenterologist, who did not seem overly concerned since she was young and had a history of good health. He told her it was probably just a musculoskeletal issue and advised her to get a good supportive chair at work and take Ibuprofen. This assessment was somewhat frustrating she said, since she still did not know what was causing her pain, but she did not pursue anything further at this point.
After rolling over in bed one night some six months later in mid-August of 2009 and feeling an extremely sharp, shooting pain in her side, she knew something was not right.
The following morning she scheduled an appointment for a consultation with Dr. Jeffrey Hamby at his Van Buren clinic, who quickly scheduled her for an MRI.
With the results of the MRI in hand, the doctor called Mona into his office informing her that after comparing the MRI to the CT scan done earlier in the year, it appeared there were more spots on her liver, and they were larger.
Wanting to move quickly, he scheduled a nuclear medicine study which revealed “hot spots” that were possibly malignant. A liver biopsy was then ordered which would determine what they were dealing with.
Mona’s father, Lawrence Daniel, accompanied her to Dr. Hamby’s office on the afternoon of Aug. 31, 2009, to receive the results of her biopsy. Sitting in his office and hearing the news that she had Hepatocellular carcinoma and that she should “get things in order” was one of the darkest days of her life, and yet she remembers her main focus was on her 17-year-old daughter and 15-year-old son.
“The first thought that went through my mind was that this couldn’t happen because I needed to be here for my kids. I was in pure shock and felt totally numb,” she said.
Dr. Hamby discussed with Mona and her dad the option of seeking treatment at a specialty hospital and suggested MD Anderson Cancer Center in Houston, Texas, a highly renowned facility sought out by patients from all over the world.
She was able to get an appointment with local oncologist Dr. Daniel Mackey very quickly, and he also encouraged her to seek treatment options at MD Anderson. He monitored her condition in between trips to Houston and was compassionate and helpful, she said.
Looking back at this particular point in her journey, Mona says she is very thankful for the support she received from the three local doctors (McClanahan, Hamby and Mackey) who made themselves available and went above and beyond the call of duty to answer questions and help guide her in her decisions.
“It was overwhelming going from one doctor visit or test to the next and waiting on results,” she said. Knowing that she could call any of the three doctors and ask for advice or have them answer questions was extremely helpful, she said.
Her first visit to MD Anderson on Sept. 25, 2009, was extremely emotional she recalls.
“The facility was huge, and it wasn’t until I was there surrounded by all the other patients that it really hit me that I had cancer,” she said.
Dr. Ahmed Kaseb took her case and agreed to see her just three weeks after her cancer diagnosis, and on his day off. Mona chooses to see the speed with which she was able to get in with both Dr. Mackey and also at MD Anderson as just one of the many divine favors shown to her during her time of searching for answers and treatment options.
After reviewing her records, Dr. Kaseb ordered an additional CT scan and liver biopsy and determined that Mona’s actual diagnosis was Hemangioendothelioma in which the blood vessels in her liver were being attacked by extremely aggressive and malignant tumors.
“Dr. Kaseb was a wonderful doctor,” she said. “He told me he took this (her case) very personal and would give me the very best care he could.”
It was quite sobering to hear the doctor say his own father had died of the same diagnosis, Mona said, but it made him want to work very hard on her behalf.
“The only two options at this point were to surgically remove the section of my liver affected by the tumors, or have a liver transplant,” Mona said. She was sent to a surgeon at MD Anderson and further learned that her entire liver was affected by the tumors and was therefore inoperable.
The reality of her condition put her into almost a state of shock for quite a while, she said.
“I was in survival mode just trying to get through one day at a time,” she said.
She points out that her faith, her family and her church family got her through this very difficult time, and she could not have managed without them.
“The work days were my best times because my mind was occupied on something other than my health,” she recalls.
Her fourth trip to MD Anderson was with a transplant team which consisted of the surgeon, a hepatologist, a transplant coordinator, a dietitian, and a financial advisor.
When they began to work through the process, Mona said, she learned that her insurance company required her to visit a transplant facility closer to home, either UAMS, (the University of Arkansas for Medical Sciences in Little Rock) or one of the transplant facilities in Oklahoma City. The close proximity to home and having close relatives living in Little Rock made UAMS an easy choice, she said.
Returning home from MD Anderson, she made a call to UAMS to try to get the process for a transplant underway. Despite being told by the transplant coordinator that it would be several weeks before she could even hope to get an appointment, Mona received a call back the very next day and was offered an appointment just four days later. This was yet another divine favor shown to her, she feels.
Her first appointment at UAMS was on Monday, Nov. 9, and as Mona recalls, was a very lengthy visit. She met with Dr. Youmin Wu, the director of the liver transplant program at UAMS, as well as each member of the transplant team.
Mona continues to be extremely impressed with Dr. Wu and what he had been able to accomplish in medicine. He was serving as chief surgical resident at Nanjing Medical University in Nanjing, China, when Dr. Thomas Starzl, liver transplant pioneer from the University of Pittsburgh and known by many as the “Father of Transplantation,” came to the university for a teaching visit. Through this contact with Dr. Starzl, Wu was able to come to the United States in 1987 to learn how to perform liver transplant surgery under the doctor who pioneered the process.
Not only did Mona consider Dr. Wu to be a brilliant doctor and skilled surgeon with an excellent transplant record, she also learned he was the developer of a surgical technique called cavaplasty that dramatically reduced the risk of massive blood loss during the removal of the liver.
Dr. Wu and his surgical team of 30-plus members performed the first liver transplant in the state of Arkansas in May of 2005. With 23 years of success in the field, Mona felt confident she was in good hands when she arrived at UAMS in need of a life-saving transplant.
Following her initial visit, Mona officially began the process to be placed on the transplant recipient waiting list. After numerous tests, labs, scans, and multiple trips to UAMS, it was determined she would be a candidate for a transplant. All of this testing in itself was stressful she said, yet she still felt blessed to have such expert treatment in her own state.
At the beginning of December, she thought all of the tests were complete and she would be placed on the recipient list. However one more obstacle was yet to stand in her way. Her tests revealed that there were spots on her lungs, and a lung biopsy would be necessary. She said she did not realize that this was actually a major surgery in itself, and recovery time would be determined by whether or not it could be done laparoscopically or by incision.
Dr. Matthew Stelliga at UAMS was able to do the surgery laparoscopically.
“This was a miracle in itself,” Mona said. “The doctor said the smallest nodule he could normally biopsy by laparoscope was the size of a gumball and my spots were the size of sunflower seeds.”
Mona had the surgery on Dec. 17, and was released from the hospital on Dec. 20 with the good news that the spots were nothing of concern and would not compromise her eligibility for being placed on the transplant waiting list.
Having cleared the final hurdle, she was contacted by her transplant coordinator on Dec. 30 informing her that she was officially on the recipient list for a liver.
There is a process that takes place at this point when a patient is “added to the list.” A transplant hospital adds a patient’s medical information into UNOS’ computer system. When a deceased organ donor is identified, the system generates a ranked list of transplant candidates or “matches” based on blood type, tissue type, body size, medical urgency, waiting time, expected benefit, geography and various other medical criteria.
Mona was told she could be on the list for just a few weeks or up to a year or more. Each transplant patient is issued a MELD score (Model for End-Stage Liver Disease) which ranges from 6 (lower need) to 40 (gravely ill) based on their most recent blood work and how badly they need a liver transplant within the next three months.
Mona says due to the fact that her blood work and liver function continued to be good, she received a lower MELD score. This was worrisome, she said, because the tumors were growing and attacking the blood vessels within her liver, but the liver itself continued to function.
“This is where Dr. Wu really went to bat for me,” she said. “He explained that if one tumor got outside my liver, I would not be able to receive a transplant.”
Since this was the only option for her disease, she said, each week she had to wait increased the possibility of the tumors spreading into surrounding organs and issues.
Dr. Wu was able to address the graveness of her situation, and her MELD score climbed to the top of the waiting list within the UNOS network.
Once you are in the “waiting” stage, Mona pointed out, you have to have your bags packed and preparations in place to leave for the transplant center at a moment’s notice. A liver is only viable from 8 to 12 hours from the time of procurement to transplantation, therefore it is critical to respond quickly, she said. She also pointed out that if a patient shows any sign of illness when they receive their call with a possible match, even something as minor as a cold, the surgery will not take place and the organ will go to the next match simply because it is too great a risk for the patient.
When Mona received the call at 11:30 p.m. on Thursday, Jan. 21, just 22 days after being placed on the recipient list, she said she was almost in shock, and then she became fearful. The donor was there at UAMS in Little Rock on life support, she was told, and if the liver tested clear, they would call her back the next morning.
She received the call the following morning that the liver was cleared and a match for her. Her emotions pretty much ran the spectrum with this news she remembers. She was relieved and overjoyed that she had received her chance at life again so soon after being placed on the recipient list, and yet fear of the unknown threatened to overtake her as well.
“I felt that my life was about to change forever, “ she said. “The reality of what was about to take place hit me when I walked up to the nurse’s station at the hospital and said ‘I’m Mona Daniel and I’m here for a liver transplant.’”
She was told the transplant would take place that afternoon. However, later in the day she learned that the recipients of the heart and lungs were out of town, and the medical facility could not retrieve the organs until the next morning.
“When I took my shower with the special soap they gave me, it overwhelmed me (at what was about to take place), and I kind of panicked and told my family that I couldn’t do it! That I wanted to go home,” she recalls.
Her family’s prayers and encouragement helped her through her last minute nerves, however, and she received her new liver Saturday, Jan. 23 in a successful four hour operation, which she came through remarkably.
She was moved out of ICU Monday, Jan. 25 and discharged from the hospital on Jan. 27, just four days after her transplant. She remained in Little Rock to be near UAMS until Monday, Feb. 1 when she was released by her doctor and allowed to return home.
Her parents, Lawrence and Sandra Daniel, her sister and brother-in-law Marcia and Mark Johnson, and her children, Lauren (Bryant) Dunn and Austin Bryant were her constant support during this time, as were friends, co-workers and church family.
“This brought me and my kids closer in a way that nothing else could,” she pointed out.
Until you have walked this path, a person cannot fully understand what it means to have an appreciation for the “little things” in life, she said.
“When you are 100 percent dependent on others and can do nothing for yourself, you learn the ‘mundane’ things are things we should be glad we are able to do,” she pointed out.
“For a time during recovery, I could not sit down or get up off the couch or the bed alone. I could not turn down my bed at night and get in it by myself or make it up myself in the mornings,” she said. “I still think of that some days eight years later and am glad I’m able to make my bed and get ready and go to work.”
Mona says her experience has helped her be more positive and to live more in the moment.
“You realize how fragile life is and it makes you realize what’s really important and to truly not sweat the small stuff. It has helped me to learn to enjoy today because no matter what it brings, it could always be worse,” she said.
Looking back at her experience,, Mona says that even though there were times of fear and uncertainty and confusion, she was able to reach down and pull from her deep-seated faith to help her overcome the fear that sometimes threatened to engulf her.
“God gave me such a peace through all of it that it still blows my mind,” she said. “I could see His hand and His favor in so many ways; from how quickly I was able to get an appointment with Dr. Mackey, to the fact that Dr. Kaseb at MD Anderson had his nurse schedule an appointment for me on a day when he wasn’t even supposed to be in the clinic. I got into UAMS within just a few days of calling on my own for an appointment when they said it would be weeks,” she recalls.
She also pointed out that a liver transplant patient can become a diabetic, therefore she was required to complete a diabetic education class before being placed on the list.
“I have never had any trouble with this, and I feel all of these things are the Lord’s favor and blessings on me,” she said.
“I also saw God’s hand in ways during my recovery as to how quickly I was able to get off most of the medicine I left the hospital on, and how well my immune system rebounded,” she said. She has had no rejection issues at all, and in fact, for several follow-up visits, her anti-rejection medication was actually reduced.
There are very few dietary restrictions and no physical limitations at all for which she is very thankful. In fact, she recalls laughingly, she was on vacation riding roller coasters with her kids on July 23, 2010, exactly six months from the date of her transplant, a feat she still recalls with wonder remembering how special it felt to be able to celebrate life again with her family. She stays active in her church and her favorite form of exercise is running when she can fit it in to her busy schedule.
Her perspective on the subject of organ donation has forever changed since her own transplant journey.
“I was not an organ donor when all of this happened to me. Unless you’re on the receiving end of it, you don’t realize it’s truly the gift of life,” she said. “I and my family are now all donors and I encourage anyone who is not to educate themselves about it and consider becoming a donor.”