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Posted: July 25, 2015 7:43 p.m.

A Journey Through Kidney Donation

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Part 1: Blame it on Facebook

I hit send and gulped. What would she think?  My cousin, Denise, and I hadn’t spoken in over 35 years and I just offered her my kidney. I wondered if I should delete my post. Who was I to even try to help? I’m a 53 year old single mom with a dog named Dipstick. Never mind the fact that my cousin and I live 900 miles apart.

A private message from Denise appeared on the screen, “Thanks for contacting me.  I would be so grateful if you phoned my transplant coordinator to learn more.”

Within days, we exchanged phone numbers and started catching up.  A lot had happened since my trip to her house in ’78.   Denise stayed in Massachusetts, married and raised three wonderful kids.  I moved several times, married, had a son, and divorced.  I’m still learning how to juggle parenting a teen, maintaining a home and working full time.

Denise’s mom, Georgette, was my godmother and my mom was hers. Our moms were close.  We lived near each other and spent a lot of time together.  When I was seven, we moved away. My godparents, Georgette and Ray, maintained a close relationship through letters.  Over the next ten years, we spent several family vacations together.  After high school, we kept in touch through our parents.

I remember hearing the news that my aunt was in kidney failure and had to begin dialysis.  She had been diagnosed with PKD (Polycystic Kidney Disease).  The incurable genetic disease usually doesn’t appear until adulthood.  Dialysis was hard on Aunt Georgette.  She was miserable and eventually didn’t travel at all.  Fifteen years later, she passed away.

No one wanted anyone else to go through that.  Before my mother passed away in 2011, she made us promise to take care of all of Georgette and Ray’s kids, especially Denise.  

When my dad told me that Denise was in the early stages of PKD, I was shocked.  I told myself that she would be okay.  Shortly after that, I was reassured that the disease was moving slowly.

A few years ago, I started following Denise’s Facebook page.  I really didn’t notice anything until she posted that her husband, Peter, started testing to see if he could donate to her.  There wasn’t any news for quite a while. Then, Denise gave an update.  The doctors had determined that although Peter was a match, he couldn’t donate.  They determined that there might be a risk to his health if he donated. The process to be approved is much more complicated than most people know.  By now, Denise’s health was getting worse and she would be facing renal failure within the year.

My brother, Dan, called and told me that he had looked into testing.  Even if he was a match, he wouldn’t be able to take time off to donate.  He had just started to work for a company that delivered home dialysis equipment.  Not being in a position to help Denise was breaking his heart. 

“Did you hear? Dan said, “Dad called to see if he could be tested.” My dad is one of the most active men I know.  He’s 81, travels, has a girlfriend and can bench press his own weight.  He was quite disappointed that they wouldn’t even consider him because of his age.

That’s when Dan asked me about my blood type.  That’s the nudge that I needed.

 So, I sent my message, “Denise, I’m type 0. What do you need?”

I believe that God works in mysterious ways.

 

Part 2: Testing... 1, 2, 3

Once again, I was clueless.  I didn’t know anything about kidney disease.  I just knew that my cousin was dying.

Even though dialysis was an option, Denise’s doctors were concerned that she wouldn’t survive very long.  On top of having Celiac disease (severely allergic to gluten), she was suffering from PKD, Polycystic Kidney Disease.  PKD is a genetic disease that causes a rapid, irreversible, painful, decline in kidney function. In order to start dialysis, Denise would have to add a renal diet to her already restricted food plan.  In order to get on a waiting list for a kidney, she would have to start dialysis.  The average wait time is 5-10 years.

Many family members were ruled out, because they carried the PKD gene.  Denise’s husband had been tested.  Even though he was a “match,” he was declined as a donor.  The doctors had determined that donating a kidney might compromise his health. 

So, I offered to get tested.  I had no idea how little I knew. 

First, the entire donor process is confidential.  Every person involved is required to tell potential donors that they can change their mind at any time.  No questions will be asked.  Most kidney transplants are done as a laparoscopy. In other words, donors usually end up with three or four small incisions. Hospital stays average three days. The recipient’s insurance covers the evaluation and transplantation costs.

For most transplant centers, there are three phases: phone contact and questionnaire, a multi-disciplinary team evaluation and a panel review.

I was surprised to learn that I wasn’t too old and met many of the first phase criteria: between 18-60 years old, good health, free from high blood pressure, diabetes, cancer, kidney or heart disease.  Testing is not just to see if a donor is compatible with the person waiting for a transplant.  Everything is done to make sure that no harm is done to the donor.  Along with my health, I was asked about my family’s medical history, my support system and responsibilities.

 I would need to be willing to travel for the transplant. If I wanted to have my testing done here in Georgia, it might take months.  However, I was told that if I went to Massachusetts, they could arrange for all of my testing to be done in one week.

This would be a great time to interject a dramatic sign from God.  Movie directors would stop all action, include a gentle tear-jerking melody .The scene would include me in fervent prayer, on my knees while angel whispered, “You’re the one. Go to Boston.”

That didn’t happen.  Quite the contrary.  Many friends and family members thought that I was crazy.  I don’t know how to describe it, but at that point, I knew that I was supposed to go.  Regardless of the outcome, I had to try. 

The next step was discussing the process with my M.D., Dr. Grace Loy.  I was relieved when she encouraged me to see if I was a match.  Most of the requested lab information was already on file.  At this point, they needed my medical history, blood type and cancer screening tests (mammogram and the ever loving colonoscopy).

All test information looked great, so I headed to Boston.  My cousin, Denise and her family welcomed me into their home. We spent a lot of time catching up.  After seeing her and learning about how was feeling, I was more determined than ever to be her match.

My week was slammed with appointments.  It started with an orientation.  The donor advocate presented a program to explain the entire process and all of the possibilities.  She said that a decision wouldn’t be made until the donor team met to review all of my information. 

There were chest X-rays, EKGs, blood tests, and many consultations.

Along with the tests to make sure that I was physically prepared, I met with specialists to address psychosocial factors.   The psychiatrist interviewed me to make sure that I was mentally prepared if something went wrong.  A social worker made sure that I had enough sick days for recovery (4-6 weeks) and insurance to address any needs following donation.

By the end of the week, I think that I had the most thorough exam in my life. I secretly hoped that someone would say something unofficial to let me know that I was a match.  I still had a lot to learn.

The last phase of the donor evaluation is done by a panel of all of the specialists. At Massachusetts, they meet each week to review the cases.  When my case came up, the panel included the social worker, transplant coordinator, nephrologist, donor advocate, psychiatrist, and donor surgeon.

I got the call in September.  I was approved as a donor, I called Denise.  I couldn’t believe that it was happening.  The transplant was scheduled for December 30.

 

Part 3: Transplantvania

Finally, the day of the transplant arrived.  My cousin, Denise, and her husband, Peter, had to drop me off in the Massachusetts General’s donor section before they headed off to the recipient wing.   When the nurse called me for pre-op, I reached for Denise.  As we hugged goodbye, I trembled.  Denise whispered, “Thank you for doing this.”  I replied, “Thank you for letting me.”

This journey to donation had taken six months.  From the very beginning, Denise and I had been coached and supported by an incredible community. Denise’s team of specialists had been working with her to prepare for the transplant. As soon as I arrived in Boston for testing, I had my own set of experts. Every appointment began with an explanation that I could change my mind at any time.  Our family, friends and faith community showered us with encouragement and prayers. My own school, Barksdale Elementary, joined in the excitement and surprised me with a basket full of goodies.  They had lovingly thought about the things that I would need after I returned to Georgia. My best friend, Myra Welch, had already planned to be my taxi driver and chef when I landed in January. I met fellow kidney donors through a walk for PKD (Polycystic Kidney Disease).  They invited me to join their Facebook group and gave valuable tips.  Through them, I learned about a nonprofit called the Living Kidney Donor Network (LKDN.org).  Their founder, Harvey Mysel, was a two-time kidney recipient.  He had been a huge support as I prepared for the donation day.

However, nothing quite prepared me for the rush of emotions as they rolled me into the transplant department.  It was so joyful.  Everyone that helped me get ready was excited about the procedure.  It was almost like being in the labor department (minus, of course, the contractions).  For the next few days, I entered what seemed like a transplant town.  The name Transplantvania came to mind as they connected me to wires and gizmos.  Peace rolled over me as I drifted into a deep sleep.

When I woke up, I tried to sit up.  I had to get to Denise.  I was sure that the transplant hadn’t started and that something was wrong.  Nurses surrounded me and reassured me that the procedure was done.  Denise was fine.  Her brand new kidney was working.  Reluctantly, I fell back asleep.

When I woke again, I was in my room on the transplant floor.  I was disoriented and wanted to see Denise.  The nurse was patient as she reassured me that I could see Denise the next morning. 

Many people came through the door that night.  I remember Denise’s husband bringing me a phone so that I could call my son.  It was so good to hear his voice.  I hadn’t seen him since before heading to Boston. 

Peter gave me updates.  Denise’s room and mine backed up to each other.  My goal was to start getting clear headed so I could start walking.  I wanted to see her.

I don’t remember feeling much pain.  I do remember being able to get help anytime that I needed it.  The transplant floor has a ratio of one nurse to every two patients.  Talk about feeling like royalty.

Denise is one of five children. Two of her brothers and their wives spent time between Denise’s room and mine.  They were my eyes and ears until I could visit her.  They brought me a pretty little turquoise box from Tiffany’s, wrapped with a white silk bow.  Inside was a beautiful silver necklace with a bean shaped pendant.  They had given one to Denise, as well.

The next morning, I felt clearer.  Nurses helped me stand and start to walk.  I held on to someone’s arm as I headed to Denise’s room. She was beaming.  I plopped in the chair beside her and breathed a sigh of relief.  The transplant was a success.

 

Part 4: Let's Save One More

I could have stayed quiet about my kidney donation. Many people do.  For them, it’s a private decision and they don’t want to draw attention.  I discovered that if I chose to do that, I would have only have helped my cousin.
According to the U.S. Department of Health and Human Services, there are more than 100,00 people on the kidney transplant waiting list.  The Living Kidney Donor Network reports that  “many people wait more than 5 years for a kidney from a deceased donor. The waiting list has doubled in size over the past 10 years - and it continues to grow. Millions of dollars are spent to encourage people to register to be an organ donor in the event of their untimely death. However, only 1% of the deaths result in organs that could be used. Even if all of these organs were able to be recovered, it would not alleviate the shortage. A staggering 4,500 people die every year waiting for a kidney transplant. Many of these individuals were good candidates for a transplant when they were first put on the waiting list.

Nationally, the number of living kidney transplants has decreased in each of the past 4 years. The programs currently in place have not been effective at increasing the number of living kidney donations. Information about living kidney donation is available from many sources; transplant hospitals, pharmaceutical companies, nonprofit organizations and numerous web sites. However, this information is either not reaching the people who need it the most, or does not provide adequate help.  Equally important, there isn’t a program available that helps someone communicate their need for a living kidney donation to family members and friends. Fear of speaking about their need is one of the main reasons and hurdles given for not pursuing living donation.”

People often ask me about my health.  I’ve never felt better.  The only thing that has changed is my outlook.  I value life so much more.  I’ve realized how blessed I am to be healthy and loved.  If I could grow another kidney and donate again, I would do it without hesitation.

Now, I volunteer for the Living Kidney Donor Network as a speaker. Please email me if you are interested in learning more about the need for living kidney donation.  Maybe you are concerned about someone who needs a kidney.  Or, perhaps you are worried about a friend who is considering donating.  Our organization is here to provide information about the benefits and risks.  We also work to help those who want to develop a campaign for a kidney.  I’d love to help save one more life.

 

 Lisa Hetzel is a writer, mother and teacher. She can be reached at hetzellisa@gmail.com

 

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