Connected By Compassion: My Brother - My Savior - Living Donor Transplant
- kjackkc
- Jun 30
- 6 min read
The thing about being on the transplant waiting list is that to qualify, a patient has to be sick enough that a transplant is urgently needed, but still healthy enough to survive the surgery and recover afterward. I was on and off the list multiple times for that very reason. It became very evident that my days were numbered unless I managed to stay at the top of the list and win the organ lottery.
As I became increasingly ill, my family came to the realization that I may not survive, a thought they were not keen on at all. As a result, my brother Tom reached out to the Nebraska Medical Center and insisted on being evaluated for a living donor transplant. Without asking me, he just did it. He was determined to save my life. I later learned that other family members had also discussed it with their doctors or other immediate family members, but Tom didn't bother with any of that- he just did it. When I found out about it, I really struggled with the idea that he would be risking his own life to save mine. Would I be able to live with myself if I survived and he didn't? Was his life any less valuable than mine?
The closer it got for a decision to be made, the more reluctant I became. I was seriously close to calling it off and telling them no. I prayed on it, mediated about it, I asked God for guidance.
One afternoon, I was napping on the couch (at this point I could rarely sleep at night) and I had one of the most vivid dreams that I have ever had in my life. I dreamt that my guardian Angels escorted me into the presence of God himself. I remember feeling confused and in awe at the same time. Once I was in the presence of God (think of the burning bush in the The Ten Commandments movie with Charlton Heston), God spoke to me and told me that I had nothing to fear. He told me that I would have the transplant, but it would not happen in the manner that I was expecting. I should put my mind at ease and trust that everything would be okay and that I would live.
A short time later, my cell phone rang. The person on the other end of the line introduced himself as Dr. Jean Botha, a transplant surgeon at the Nebraska Medical Center. He told me that the test results for Tom indicated that Tom's right lobe was not suitable for me due to differences in our vein structure However, he asked if I would be willing to be the test subject for a new procedure that could potentially change living donor liver transplantation for future generations. The new procedure entailed harvesting the smaller left lobe of the donor liver instead of the larger right lobe, which makes up 60% of the liver. This approach significantly reduces the risk to the donor. He went on the say that because the left lobe is too small to filter the amount of blood that must flow through it, they would insert a shunt to redirect the overflow of blood directly into the inferior vena cava (the largest vein in the body) and that in time, the new portion of healthy liver would regenerate into a full liver and the shunt would no longer be needed. Dr. Botha had me at "reduces the risk to the donor". In that moment, I knew this was what God had meant, and that I needed to trust Dr. Botha. I said yes.
Once I agreed, the surgery was scheduled for August 2007 and the rest is history (spoiler alert - we both lived)! After the surgery had been successfully completed and I was somewhat coherent, Dr. Botha told me that my liver was so bad, that I would have become a statistic by Christmas. Soak that in for a moment. A statistic! It is my hope that through education and knowledge sharing, we can move the needle on those statistics in a positive way!
The recovery was somewhat more difficult due to the fact that not all of my blood was being filtered (the shunt redirected the blood that the smaller lobe could not process). As a result, I experienced severe hepatic encephalopathy due to ammonia and other toxins in my blood making it to my brain resulting in confusion and cognitive impairment. I was usually fine in the morning, but as they day went on and I consumed food and drink, I would become increasingly impaired. I was not expecting that and I thought that I had lost my mind. I thought great, I'm still alive, but crazy. I became increasingly depressed about it until one of my doctors became aware of my dismay and told me, "Kathy, crazy people don't know they're crazy. You aren't crazy, your just sick". He then went on to explain the condition and that it in time as my new liver grew to full size it would be able to completely filter my blood again, resolving the issue. The shunt remained in place for almost a year following my transplant surgery until it was removed at my request as it was no longer necessary and the encephalopathy had not improved. Once the shunt was removed, I was no longer afflicted with the cognitive impairment.
It has now been 18 years since my brothers generosity saved my life. I have been able to watch my children grow up and start families of their own. I am a grandmother who jokingly coaxes her grandchildren into calling her Gramajesty on queue and I love every minute of it. In addition to raising my own children, my husband and I raised my younger brothers children as well. In 2013, the youngest was in an auto accident caused by a drunk driver. As a result, he is now paralyzed from the neck down (quadriplegic) . He lives at home with myself and my husband and we do everything we can to allow him as much normalcy as possible. In spite of his disability, he is a delight to be around and he maintains a positive attitude. If feeling sorry for myself ever creeps into my mind, I need only spend a few minutes with Connor and I realize just how precious my life and the people in it really are. I sometimes think that God kept me here because he wasn't finished with me yet, I still had work to do. Tom saved more than just me that day, he saved my family and everything that I hold dear. I will be grateful to him for eternity.
About Living Donor Transplants
Procedures at Transplant Centers vary. If you are having a living donor liver transplant and want to reduce the risk to the donor, ask about whether or not the left portal is an option. At some transplant centers, such as the Nebraska Medical Center, it is now the standard practice.
The evaluation of the donor is designed to protect both the donor and the recipient. It ensures that the donor is healthy enough for the surgery and is making an informed decision. A potential living donor undergoes both physical and psychosocial examinations (the psychiatrist that evaluated me looked exactly like Keith Urban - but that an entire story on it's own). Testing can vary depending on the organ and donor’s age.
Living-donor liver transplant is possible because of the liver’s ability to regenerate. A living liver donor can have a portion of their liver removed and it will regenerate or grow back within a few months after surgery (same for the recipient). While recovery times may vary, most living liver donors are able to return to their pre-donation level of health within a few months after donating. Donors are required to follow-up with the transplant hospital for two years following both kidney and liver donation.
A kidney donor will be hospitalized on average for 1 to 2 nights. A liver donor will be hospitalized on average for 4 to 7 nights. Liver donors may spend at least 1 night in the ICU for monitoring. A donor will have some follow-up appointments after hospital discharge.
The costs for the medical testing, surgery and post-operative care are covered by the transplant hospital or recipient’s health insurance. The cost of treatment of future issues that result from the donation, may be covered. Medical costs that are not covered include post-surgical routine health maintenance.
Employed living donors should learn about their company’s paid sick leave, disability and the Family and Medical Leave Act (FMLA) policies if applicable. A transplant financial coordinator is available at each transplant hospital to answer questions.
The National Organ Transplant Act allows for organ recipients to pay their living donors’ travel and housing in connection with the donation. The transplant hospital financial coordinator will check with the insurance company of the intended recipient as the policy may provide a travel benefit. There are organizations that provide financial resources to living donors for uncovered costs depending on need. Transplant hospitals can provide additional information about options.
National Living Donor Assistance Center (NLDAC) Note that eligibility for financial assistance from NLDAC is based on the recipient’s household income which may not be more than 300% of the current Federal Poverty Guidelines.
Resources
(Note: Tom passed in 2019 as the result of ALS . Rest in peace my brother)
Kathy,
I learned so much. Keep up the knowledge train!!!
Even though I knew most of your transplant story it still brings tears to my eyes. Tom is certainly a hero in my eyes too. So thankful for both of you.