The donation of life

The donation of life

By PRISCILLA VANDERVEER

Priscilla VanderVeer is the recipient of a donated kidney. This is her story.

When I was 4-years-old, I was diagnosed with Henoh-Schonlein purpura (HSP). It's an auto-immune response, like an allergic reaction. The doctor’s had no idea what caused it. It's quite rare to actually get HSP, and although many people have some minimal kidney involvement, you usually recover completely.

I did not.

When I was 6-years-old, both of my kidneys completely stopped working. I had to start dialysis. It was peritoneal dialysis, which requires an abdominal catheter and bags you have to change out every 4-6 hours. It wasn’t easy being a little kid with a catheter, but my mom made the best of it, making cute little bags to put my dialysis bag in with Strawberry Shortcake and My Little Pony on them.

I remember little from that age. I remember not being able to walk very much. My mom had to carry me often – fortunately I was tiny and weighed next to nothing. I spent most of my time in and out of the hospital. I missed most of first grade. If I did make it to school, I was only for a half day, because I had to go home for a dialysis treatment.
I have four siblings, all older than me. When my mom had to work, my sister would do my dialysis treatments. She was 12. I think back and wonder how my family did it.

That year, my mom found out she could donate a kidney to me. My sister and brother were better matches than my mom, but they were too young. It took about a year to get all the testing, work on all the screening, and prepare everything for the surgery.

On June 21, 1983 I received a kidney transplant from my mom. It worked and doctors hoped it would be a permanent fix. A year later I started to show signs of chronic rejection; the kidney still works, but the body starts to slowly reject the organ. The body understands it's a foreign object and doesn't want it in there so it fights almost like a virus. There is no reversing the process, but they can try to slow it.

My body kept the kidney working for almost 13 years. During that time I was pretty much as normal as possible. I couldn't play contact sports or ride upside down roller coasters or do anything that would jar or harm the kidney. My parents were great about never letting me use my ‘disease’ as excuse to sit out, to stay home, or be different. We all knew that someday my kidney would no longer work.

I was accepted to a school in Washington, DC on a scholarship. I knew it was a huge risk, and that my kidney wasn't doing well, but couldn’t let it stop me. I went to DC in August of 1995, and met up with a doctor at Georgetown I had known as a child back in Buffalo. He agreed to follow my case while I was living in DC, and my mom's fears were kept in check.

By March of my freshman year I started taking a turn of the worse. I felt terrible. I was struggling to get to class. I couldn’t concentrate. I went to see my doctor at Georgetown to give a blood sample. A few hours later I got a phone call I'll never forgot.

‘Priscilla, it’s time.’

To a kidney patient, this means your kidney isn't getting rid of any of the poisons it's supposed to put out with the urine. This news means your kidneys can no longer do their job. It means dialysis.

I didn’t want to call my mom. She was on a train that night to come see me and go back to the doctor. I left in the middle of my second semester at school and moved back to Buffalo. It was one of the most devastating moments of my life.

I was running out of options. My brother and sister were no longer a match. I'd developed an antigen from my mom's kidney that reacted with them. A kidney from them would have failed.

I was put on the transplant list and had the first of numerous surgeries. My body began to give up. A collapsed lung. A blood infection. A leaking abdomen. Seizures. Pneumonia. You name it, it happened. The peritoneal dialysis I had been able to use in the past that allows independence and at home care wouldn't work because of my past abdominal surgery. I underwent hemodialysis, which requires three sessions per week at a clinic that take anywhere from 3 to 4 hours.

We moved to New Mexico in 1997, to get away from the miserable Buffalo winter. The climate helped my condition and the medical care was more advanced. I enrolled at the University of New Mexico and worked with Americorps setting up after-school literacy programs in pocket of poverty programs.

At the start of 2000, I was into my 4th year on the transplant list and totally despondent. I was getting sicker, my dialysis accesses were failing, and there was no end in sight.

I was 24-years-old, I was working, going to school, living on my own, and dealing with an illness doing everything it could to stop me from living a normal life. The unfairness of the situation was like a giant weight sitting on my shoulders all the time.

Usually I shrugged it off, and just kept moving forward. I was the model patient who sat there and let them do whatever they needed to do without complaint. I ate what I was supposed to eat. I followed the strict fluid intact limits, showed up on time to my appointments. I was a dialysis patient rock star.

Then one day I lost it. They had lost the ability to use my arms for dialysis access for hemo treatments. I'd had surgery to put in a new access but it didn’t take. They had a temporary catheter in my chest, but the dialysis I was getting wasn't properly cleaning my blood or draining my fluid. They decided to perform a test to look at blood vessels in my legs, to see if they could put an access in my legs. This particular form of torture required threading catheters from the veins in my ankles up through the tops of my thighs and pushing dye through to see the size of the veins and arteries. When they couldn't do it because my veins were too small, and the pain just got to be too much, and I lost control. I started screaming at them to stop the test, to let me go, and that it was unfair that I had to go through all of this. I was screaming to myself in my head "Why can't I just have a kidney???"

My condition worsened and I was moved to first on the list in our region. Two weeks later I got the call. They had a kidney. A 28-year-old woman had been in a car accident near the ski area in Taos, NM.

March 13, 2000. My second transplant. It worked for about 3 or 4 hours. Then my body decided to attack. I have very vague recollection of this time but one very vivid memory.
The vague recollections are of biopsies, oxygen masks, problems breathing, and my mom and sister having a hard time talking. People trying to look happy. There were a lot of flowers in my room. I was in and out of consciousness, drowning in about 35 pounds of fluid that wouldn't leave my body.

The vivid memory is of one of my doctors who’d come to deliver the bad news. A biopsy determined the kidney was being rejected. As he laid out our options, I remember it as one of the few moments of my life when I've ever had such clarity. I thought to myself that whatever choice we made to move forward on a particular method to combat the rejection, if it didn't work, I was done.

I couldn't fight anymore. I said to the universe that I was tired of fighting and I was finished. And I was actually fine with the decision. I wasn't scared, or worried about the final outcome. I just knew that if this kidney wasn't going to work, so be it. No more transplants, no more dialysis. This was it. I was ready to move on.

Moving on didn’t mean dying. It meant I was going to fight to make this work.

Clearly someone or something, overheard my internal moment of clarity. Through amazing medical technology and some serious divine intervention, this kidney pulled through.

It hasn't stopped since. I've had some scares since then, but after almost 8 years I'm doing pretty damn well. My knees are falling apart, I still struggle with body issues and never really being able to control how I look, but I do think about the fact that I'm alive.

The part of my story that can never get lost are the people who gave me the chance to be alive. My donor, Michelle, died just a few weeks after her 28th birthday. I always knew I would write a letter to the family who made the difficult, but anonymous, decision to donate the organs of their loved ones during the most heartbreaking moment of their lives. I wanted them to know that their decision was never lost on me, that they made such a difference in my life, and that I would do what I could to honor their daughter, despite never being able to replace her. I gave them the option of contacting me by providing my contact info, but let them know they by no means should feel obligated to. The transplant services office forwards the letter on to the family – I had no way of knowing who they were.

In 2001, I met Michelle's mother, Heather. She's a vibrant, outdoorsy, extremely spiritual woman who feels her daughter in everything that she does. Michelle's stepfather Jim is a kind-hearted man who has no problem sharing his emotions and expressing his happiness at the life he has, while understanding what he has lost. They are truly amazing and strong people, and I can only hope to bring some tiny piece of healing to their life after what they have given me.

They both came to my wedding in September. It meant a lot for them to be there, both for them, but especially for my husband and me. I know it was bittersweet for them, but also great for them to meet the rest of my family and serve as a reminder to everyone there on the power of family, the power of giving and of how you live on after you pass away.

http://www.phillyburbs.com/pb-dyn/news/94-03032008-1497395.html