Transplant Tough Cookie

3 years, 356 days and (roughly) 23 hours ago I answered a call from Alabama with one of the nursing transplant coordinators from Children's of AL on the other end. My heart dropped as the nurses never called after hours. The nurse said she was calling with some “potentially good news”, a preliminary kidney match was available.

Do you ever hear good or bad news and have to force yourself to NOT mentally black out because you KNOW you HAVE to remember details? Meanwhile, you're trying to listen and commit every single detail to memory AND also begin doing the list of things that need to be started RIGHT THEN.....I may not can tell you what clothes I wore yesterday but I remember that call so distinctly, as if it were ten minutes ago. The nurse had given me some additional news that Rico and I needed to make a decision on, reasonably quickly. I told her that he was at work but could be home quickly and asked how soon we needed to be on the road? She told me we needed to be safe above all else and to try to be on the road within the hour (because we had a 4 hour drive) and to call her back as soon as possible after discussing with Rico whether we were going to accept the potential kidney.

You’d think you would automatically say YES to a potential kidney match, right? Not exactly. Our girl was going to be a difficult match and we had known this which is why we had been waiting for a kidney for almost 6 years. I will spare you all the medical mumbo. Because of being a difficult match, she was listed nationally on the transplant list, not just locally. UAB/Children’s of AL had started accepting organs that were from donors considered high-risk. The kidney being offered to my daughter was from a high-risk donor. The donor was an addict, an IV drug user who had fatally over dosed. I do not know if the donor was male or female, their age, their drug of choice, nothing more about them than what I have shared above. So many questions and what ifs were overcrowding my mind as I was throwing things into a bag. Thankfully, I am a planner, so I had a note in my phone with a list of things that I needed to be sure I took with me for myself and the kiddo whenever we received THE CALL. That saved a lot of time. Mom and kid covered but Dad, well, he was on his own. LOL

High-risk donors include those who have recently used drugs intravenously, been incarcerated or who have engaged in sexual acts in exchange for drugs or money. All of this increases a person’s risk for infectious diseases. I was sure to ask a lot of questions regarding the testing involved on the kidney to decrease the risks and learned that the risk was very low for transmission of disease. STILL, there was a possibility and her dad and I were obligated, as parents, to consider that. After explaining everything I had learned from the nurse about high-risk donors, we opted to move forward. The following morning, we ended up speaking to the other nurse/transplant coordinator, our two main Nephrologists as well as her transplant surgeon further about the possible risks involved and felt even more at peace with our decision to “get the kid a kidney”. We had worked diligently to keep her safe and healthy and the LAST thing ANY of us wanted was to put her at risk post-transplant. Although we were anxious to get a kidney and passing up this offer could mean waiting another 6 years, or more, for a match, we had to thoroughly think about and discuss what accepting this kidney meant and COULD mean for our girl and her future. The decision for UAB to accept high-risk donor organs was not taken lightly and especially not for pediatric acceptance. Our transplant team gave us facts and information. They did not in any way try to influence us one way or the other. We took those facts and opted to move forward.

There is a significant shortage of organ donors. Every 9 minutes, someone is added to the national transplant waiting list. 17 people die every day while awaiting an organ transplant. (www.donatelife.net)

The opioid crisis is the leading cause of death of Americans under age 50. From 2013 to 2016 deaths from opioids increased 540%. From 2018-2019, MS had a 55.1% increase in drug overdoses (the highest increase than any other state in the US), TN 46.2%, AR 41.5%, AL 36.8%, and LA 50.9%. From April 2021 to April 2022 there was already a 2.58% increase in MS overdose deaths, with a projected end of year minimum increase of 3.12%. US as a nation increased by 3.9% during this time with projected increase from 2021-2022 to be 6.9%. (Data taken from CDC website.) If these numbers do not alarm you, they should. I would venture to say that it also means that you have likely not been directly impacted by a loss due to overdose, YET.

In 2017, one in five organ donors were considered high-risk. ONE IN FIVE…and that’s a statistic from five years ago. It is a tragic fact that the opioid crisis has led to an increase in overdose deaths which has in turn increased the availability of organs for possible transplant.

You will have to forgive me as it has been a while since I have looked at more updated research but do know that the American Heart Association as of mid-year, 2021 published information stating that they have failed to discover a negative side to using transplanted hearts from donors who had been illicit drug users. The largest study to date (lead study author David A. Baran, M.D., system director for advanced heart failure and transplantation at Sentara Heart Hospital in Norfolk, Virginia), “found that the percentage of transplant recipients who survived was comparable between transplant recipients who received a heart from a donor who used any illicit drugs and those whose donors did not use drugs”.

Despite all research of using high-risk organs for transplantation being safe (this of course after all of the rigorous testing required prior to accepting the organ for transplant), only about 20% of those listed for transplant accepts a high-risk organ. I challenge the stigma! We have never kept the fact that the  donor kidney we accepted was from someone who had over dosed, but I know there are many who may not know or remember. It was NOT a decision made lightly and is most certainly a decision to be made for each individual person. I would never fault anyone for making the best, most educated decision for themselves or their child. I simply wanted to share my girl’s story and although you can never predict the future, she is TRANSPLANT STRONG, going into her 5th year with Karla the Kidney and THRIVING. There are still days that I look at her and the flood gates of tears open and stream, from my appreciation for my daughter being where she is today. I am thankful for the family who made the compassionate choice in their time of grief to generously donate their loved one’s organs. I am thankful for her transplant team of doctors, nurses and pharmacists, who so carefully guided us in keeping her strong and healthy as we awaited a kidney. I am thankful for my faith in the Lord, although sometimes wavering, the He stood beside us and held my child in his hands before, during and after transplant. I am thankful for her God-fearing transplant surgeon who could not have been a better choice for us. I prayed for the “perfect kidney” in God’s perfect timing, not mine. That “perfect” kidney came from a non-perfect life/lifestyle. I cannot begin to imagine how the donor may have become an addict and what kept them from being able to successfully seek help and live a life of sobriety. I can only hope their family is comforted in knowing that through their decision and loss of a loved one, they gave life to others, my daughter being one of them.