World Kidney Day and . . . My Four Month Transplant Anniversary

March 12th is World Kidney Day.

World Kidney Day is observed every year. All across the globe many hundreds of events take place from public screenings in Argentina to Zumba marathons in Malaysia. But for me, the day means something personal and very real. March 12 will be exactly four months since I had my kidney transplant at Mayo Clinic in Jacksonville, Florida. Five years on dialysis presented its own challenges. But these past four months post transplant have been grueling, challenging and confining. In fact, for various reasons including bouts of infection, I am still quarantined at home. I deal every day with the harsh reality that powerful immunosuppressant medications have decimated my immune system to the point that getting out among people is not possible, for now. On top of that, the side effects of my drugs are harrowing at times. There are so many things I love to do are now very difficult, if not impossible. I knew, of course, that a transplant is not a cure. It is just a treatment, the best treatment available. All of the post transplant realities have been bewildering and unsettling. I sometimes describe post transplant reality as the disarrangement of my way of life.

At the same time, I celebrate the miracle of the living gift I have received. I am deeply grateful and humbled by the living donor who contacted me months ago to offer his kidney — my long-time friend Greg Adams of Little Rock, Arkansas. After almost two years of testing at hospitals in Atlanta and Jacksonville, Florida, Greg was approved to donate. He was not a match for me, so the matching began. I was eventually gifted with a kidney that traveled to me from Mayo Clinic in Rochester, Minnesota, from a kind and lovely woman — Corita. Greg gave his kidney to Autry at Mayo Clinic in Jacksonville, Florida.

But that was only the beginning of the miracle. Greg’s willingness to donate his kidney to someone he did not know created a chain of eight donors and eight recipients. His altruistic donation enabled eight patients to receive new kidneys and new lives.

For all of this, I say: Thanks be to God, the Giver of Life.

It is a difficult prospect to ask someone to consider donating a kidney. I can not forget that they experience the pain of surgery and recovery, as well as feeling the loss of losing a vital organ. So when someone like Greg appears out of the blue and offers his kidney, I can only respond with heartfelt gratefulness and deep humility. Because it is so difficult for most everyone to ask another person to donate, the National Kidney Foundation offers this word of encouragement: A CONVERSATION CAN SAVE A LIFE!

Whether you need a kidney or are considering donation, I encourage you to start the conversation, first with a trusted friend or family member. Get comfortable with the idea of asking someone for a kidney. Begin “the conversation” with anyone that might consider donating. For thise of you who might consider donation, again start the conversation with someone you trust. Then visit some of the websites below to learn all you can. Start the conversation because all of us want kidney health for every person.

Understanding Living Donation

Relatives, loved ones, friends and even individuals who wish to remain anonymous often serve as living donors to spare a patient a long and uncertain wait. In 2019, more than 7,300 transplants were made possible by living donors. If you are considering living donation, it is critical to gather as much information as you can from various sources. Start here for living donor information: https://unos.org/transplant/living-donation/

So celebrating March 12 — World Kidney Day and my own kidney transplant anniversary — is a way to create awareness. Awareness must be about preventive behaviors, about risk factors, about how to live with kidney disease and awareness of the possibility of becoming a living donor. Consider these alarming statements:

• • 15% of US adults—37 million people—are estimated to have Chronic Kidney Disease (CKD).
• • Most (9 in 10) adults with CKD do not know they have it.
• • In 2016, nearly 125,000 people in the United States started treatment for End Stage Kidney Disease (ESKD), and more than 726,000 (2 in every 1,000 people) were on dialysis or were living with a kidney transplant.
• • Over 3,000 new patients are added to the kidney waiting list each month.
• • Every 14 minutes someone is added to the kidney transplant list.13 people die each day while waiting for a life-saving kidney transplant.
• • In 2014, 4,761 patients died while waiting for a kidney transplant. Another, 3,668 people became too sick to receive a kidney transplant.
• • There are currently 121,678 people waiting for lifesaving organ transplants in the U.S. Of these, 100,791 await kidney transplants.
• • The median wait time for an individual’s first kidney transplant is 3.6 years and can vary depending on health, compatibility and availability of organs.
• • Every day, more than 240 people on dialysis die.
• • In 2014, 17,107 kidney transplants took place in the US. Of these, 11,570 came from deceased donors and 5,537 came from living donors.

 

We don’t want to know this part, but here it is anyway:

— About 1,400 children began care for kidney failure in 2013.

— The number of children with kidney failure is increasing every year.

— About 9,900 children were being treated for kidney failure as of December 31, 2013.

— The most common initial treatment for kidney failure among children overall is hemodialysis (56%).

— Peritoneal dialysis is the most common initial treatment in children younger than 9 years and for those who weigh less than 44 pounds (20 kg).

— There were over 1000 children waiting for a kidney transplant as of November 27, 2015.

— The number of children receiving kidney transplants was highest in 2005 at 899.

— About 700 children received a kidney transplant in 2014.

— About 70% of children with kidney disease will develop kidney failure by age 20.

— Children with kidney disease have a greater chance of dying than children in the general population. 

The organ shortage continues . . .

Each year, the number of people on the waiting list continues to be much larger than both the number of donors and transplants. Perhaps we can make a difference by supporting persons on dialysis, persons who are making the decision about dialysis, persons who are recovering from a transplant and persons who are considering donating a kidney. Perhaps we could start conversations.

Still, there is good news:

Yes, there is good news in 2019 statistical information for persons who have suffered with kidney disease for years, maybe even their entire lives. I do not exaggerate when I say that thousands of persons languishing on dialysis really need good news!

I can definitely celebrate these statistics. But I will never forget that Jalen, my youngest grandson, was born with kidney disease and went on dialysis. I will never forget the fear and frustration his parents felt. I will never forget the sheer joy we all experienced when his kidney disease resoled itself as his little body grew.

As I celebrate World Kidney Day on the 12th day of March and my day — on the 12th day of November, it is fair to say that my life has changed in ways I know and in ways I do not yet know. Yet, on this day I will think of Greg’s words about donating and receiving: “We are forever connected in a special way — and that’s a good thing.” On this day, I will know that healing for me will continue. I will be propped up by my dearest and closest friends, by my friends all over the world who pray for me, by my loving church family, by my dear caregiver husband and by my family near and far. 

I will say again: For all of this, thanks be to God, the Giver of Life.

 

For more information about kidney disease and about Living Donor programs, please visit these links:

https://www.worldkidneyday.org/facts/chronic-kidney-disease/

https://www.cdc.gov/kidneydisease/publications-resources/2019-national-facts.html

https://www.kidney.org/atoz/content/answering

https://www.organdonor.gov/statistics-stories/statistics.html

https://www.kidney.org/news/newsroom/factsheets/Organ-Donation-and-Transplantation-Stats

https://optn.transplant.hrsa.gov/news/organ-donation-again-sets-record-in-2019/