My Tolerance Story: Lindsay Porter
I was diagnosed with polycystic kidney disease (PKD) when I was 19, shortly after my mother discovered she had it. My mom died just a few years later, at the age of 48, from complications related to PKD.
I always knew that my kidneys would eventually fail, so it wasn’t a surprise when I went into stage 5 kidney disease in my 40s. I was a good candidate for transplant because I was relatively young and healthy, and because PKD is genetic and doesn’t affect the transplanted kidney.
I found a friend who was willing to donate to me—someone in my theater community, which is filled with open-minded, open-hearted people. I had to have both my kidneys removed in preparation for the transplant because they were so big, and because I had some suspicious-looking cysts that needed to be tested for cancer. Because I had no kidneys, I started in-center dialysis as I healed from my bilateral nephrectomy and prepared for transplant.
My friend ended up having to postpone his donation from June to July. At first, I was disappointed because that would mean I had to be on dialysis longer, but it so happened that the second phase of the tolerance trial at Northwestern opened on July 1. I’ll never forget the day I got the call from Dr. Leventhal asking me if I would like to be the first patient in phase 2 of the clinical trial that would allow me to live free of immunosuppressive drugs.
He told me all about it, and I wanted to sign up right away, but first I needed to be evaluated to see if I was a good candidate. For this study, I had to have a PRA (panel reactive antibody, which measures the level of antibodies in my blood that could trigger kidney rejection) of under 20. My score was zero. That means that out of 100 random samples from matching blood types, my blood did not react negatively to a single sample. Meaning I was a very good candidate to not reject a kidney. My brother said, “You’ll put anything in your body—they should just stick a hot dog in there.”
I also had to talk to my donor because he would have to donate stem cells in addition to his kidney. He said if that means you can keep my kidney for life, I’m in.
I had the kidney transplant on July 30 and the stem cell transplant on July 31, 2010. I got off immunosuppressants a year later, and I now feel great. I achieved 100% chimerism, which means my blood is my donor’s blood. My blood type changed from B to O, and I have my donor’s DNA in my bloodstream.
Because I don’t take any immunosuppressive medications, I am free to travel and live without restrictions. I started this new career in my 50s, and now, at age 60, I am traveling all over the country, having a great time.
Lindsay Porter
A few years after my transplant, I decided to pursue a lifelong dream of doing standup comedy. Because I don’t take any immunosuppressive medications, I am free to travel and live without restrictions. I started this new career in my 50s, and now, at age 60, I am traveling all over the country, having a great time. I have the luxury of forgetting for weeks at a time about my kidney.
The protocol itself, including the chemo and the radiation, was a bit of a rough road. I had a three-year-old at home, and my husband was busy at work. I had to quit my job and hire a full-time nanny as I recovered. Those first few months were rough.
I had some complications, which is pretty normal. I developed some skin conditions and had to go back into the hospital for a few days. I was very tired. I lost a lot of weight and my hair during chemo, and I went into chemo-induced early menopause. I gained a lot of weight, but was eventually able to lose most of it again as my body recovered and adjusted.
My recovery still felt remarkably quick. By Thanksgiving, I was pretty much back to normal. Even with all of those little bumps along the way, the privilege of not having to worry about medications or having another transplant is so worth it. It was a privilege to be part of a groundbreaking study that will hopefully help many more patients lead normal, healthy lives after transplant.