Imagine finding your soulmate and you start building a future together. Suddenly, they become ill with severe stomach problems, fatigue, and vertigo. After multiple visits to the emergency room with very few answers, you're diagnosed with End-stage Liver Disease (ESLD) and given only three months to live. This was the reality for my now husband, Tim, in early 2021.
Hearing the words, “you have three months to live,” was the most heart-wrenching feeling I have ever experienced. Within minutes, the whole future we planned was suddenly gone. I was numb to my core with so many questions. How did we get here? Why wasn’t this caught on one of the first six visits to the ER? But really, just, why? Why us?
Trying to move past our initial shock, we began asking ourselves what actions could we take. After further discussions, it became clear that a liver transplant was his only viable option. Unfortunately, the initial hospital declined to pursue further treatment for Tim, determining that his deteriorating health rendered him ineligible for a liver transplant. So, after two weeks, the facility prioritized comfort and assigned a palliative care physician to oversee his well-being. The palliative care doctor, in hindsight, turned out to be a blessing in disguise, as she contacted a colleague at another institution whose expertise included hepatology and liver disease. Upon reviewing Tim's case, the specialty doctor promptly arranged a consultation with their hospital. At the same time, as Tim's condition continued to deteriorate, he was transferred to the new hospital for more specialized care.
Tim was transferred to the new hospital on a Thursday evening, and within 24 hours of his transfer, they had run all the necessary tests needed to list him on the National Transplant List. By the following Monday morning, he was officially listed. We learned that your priority on the transplant list is determined from the testing that was done, which results in a MELD score. The MELD is a numerical system used to assess the severity of liver disease and prioritize patients for liver transplantation. The MELD scores range from 6 – 40. A score of 6 being mild liver disease to a score of 40 being the very extreme case of liver disease. Tim had a MELD score of 39, which meant he went to the top of the list for the next available organ. Now we just had to wait and pray for a miracle.
This was still during COVID, so although I was able to be with him at the first hospital, once he was transferred to the new hospital, I was unable to see him, as they were not allowing any visitors at that time. Just two days after he was officially listed, on Wednesday, February 10, 2021, a date I will never forget, his doctor called me and asked me to come to the hospital. They were making an exception for me to visit because they did not think Tim would last the week, let alone a few more days. They had done all that they could to make him comfortable, but time was truly of the essence. I arrived the earliest they would let me and sat by Tim’s bedside until it was time to leave. I played him all his favorite music and talked to him about the memories we had made in our short time together, before ultimately saying my goodbye to him. It took everything in me to leave that hospital room that night, thinking that’s the last time I would see him alive. I will carry the memory of this day with me for the rest of my life.
The next morning, I received a phone call from the transplant coordinator. They shared with me that they had a potential donor match, but would not know for certain for a few hours until they ran all the necessary tests. I waited and waited for what seemed like an eternity. Finally, at 5:46 pm on February 11, 2021, I received a call that confirmed the donor liver was indeed a match and he would undergo surgery within the hour. The numbness I felt when they said he was dying was profound, yet the emotional whirlwind that came with the news he would recover is something I still struggle to put into words. He received a miracle that day.
Nearly five years later, Tim is here and doing well. While we've faced our share of health challenges, including a daily regimen of medications and a journey that hasn't always been smooth, he continues to persevere. He’s already overcome one episode of rejection and now manages new health issues that didn’t exist before, but the most important thing is that he’s here. After his transplant, we gained a deeper appreciation for the value of life. Not wanting to let another moment slip by, we got married that same year and have been embracing every day to the fullest ever since.
I am deeply grateful to the doctor who went above and beyond, reaching out to a colleague to ask them to take on what seemed like an impossible case. I’m also incredibly grateful to the many doctors and staff who have cared for my husband every day since his surgery; you are all heroes in my eyes. But most of all, my deepest gratitude is to the donor and their family. Thank you for making the incredibly difficult decision to donate your loved one’s organs, giving not only my husband but many others a second chance at life during that week in February 2021.
As the month of October is National Liver Awareness month, I will reflect on how our lives were miraculously changed due to someone’s most selfless act of being an organ donor.
