Introduction: Organ Transplantation - Courage and Self Advocacy

In loving memory of Josie Handley-Barnes 1962-2025

Introduction

My name is Kathleen Jackson and in 1999, my life took an unexpected turn that would lead me on a journey of hope, resilience and the power of sharing. It was at this time that I was diagnosed with cirrhosis of the liver.

My disease progressed and by 2007, I had reached end stage liver disease. I was on the Transplant list, and if not for the love of my brother Tom, I would not be here today. I was the first patient in the US to receive a left portal shunt living donor transplant.

This year, in 2025, my childhood best friend, Josie Handley-Barnes, passed away from end stage liver disease. She had been on the transplant list for seven years. It absolutely broke my heart to think that there are still thousands of people dying each year while waiting for an available organ.  I wondered why that is and what could I possibly do to help change that.  It occurred to me that education and advocacy are crucial toward making real progress and that sharing my experiences might somehow help to inform people about this important topic.

I am not a medical professional and cannot give medical advice, but I can share my own personal experiences and the information that I have gathered over the years. Information brings knowledge and knowledge is power.

Sharing My Experience

Throughout my journey, I encountered countless challenges and met many dedicated, fearless individuals who inspired me to keep going. I read relentlessly looking for answers and discovered that there are a number of things that no one tells you until it is at your doorstep. There are many topics that no one talks about and support groups are totally hit and miss. It is virtually impossible for anyone to understand your journey until they have walked that walk.

In addition to understanding various options and resources as you move through the transplant process, it is important to be aware of your own mental health and the impact of the experience on those around you. It is important to have those tough conversations and to navigate in a way that is healthy and will allow you to achieve your long-term goal - to Live!

I decided to write this blog in honor of my beautiful friend, hoping that if it helps just one person, it will be time well spent. Two days prior to her death, I saw a story on CBS News stating that 1 in 5 donated organs are being tossed out.  There are recommended strategies to address that topic, which I will delve into in a future article.  When my friend passed, I decided to reach out to the surgeon that performed my transplant to get his thoughts on the subject and to ask for his input. In that exchange, he told me that he wished that I had reached out to him sooner, because the average wait time at his transplant center is 14 days. My beautiful friend was on the list for SEVEN YEARS!  There are many factors that are considered that determine where you are on the transplant list.  Understanding the criteria and the policies of the transplant center that you choose is crucial.  I intend to address that topic and many others in the days and weeks ahead.  The journey to organ transplant requires a great deal of courage.  It takes courage to face your own mortality, and to navigate this frightening experience with grace and dignity. 

I can say, with absolute certainty, that you are your own best advocate!  Being your own advocate is not optional, it is essential!

Important Transplant Statistics: 2025

• Number of transplants needed:  105,734

• Actively on the waiting list 59,180 (on May 28,2025) numbers change daily

• Number of deaths while on waiting list:  17 per day

• 1-5 donated organs are tossed out – 12,000 last year (2024)

• 28,000 donated organs go unused each year due to inefficiencies in the system.

  
  

  Transplants – 2024 vs 2007

Number of Transplants	2024	2007
All Organs	48,149	28.366
Deceased Donor	41,119	22,053
Living Donor	7,030	6,313
Liver Only	11,458	6.494
Deceased Donor	10,854	6.228
Living Donor	604	266