At Sanofi Genzyme, we have always been a committed partner in transplant – this can be seen in both our ongoing collaborations with the community to ensure future progress in the field, and most importantly through our connections with transplant patients. At the 2016 American Transplant Congress (ATC), we showcase this commitment by profiling Lucy Maliszewski, who uses art to express the emotion behind her transplant experience.
Lucy Maliszewski was diagnosed with glomerulosclerosis, a condition that would require her to have a kidney transplant. The path to treatment was challenging. To help cope, Lucy leaned on family and friends and rediscovered painting as a way to express her emotions. This is her story.
I started having kidney problems when I was 11 after suffering from very high temperatures. I was later diagnosed with glomerulosclerosis. I had only forty percent use of each kidney and I suffered from severe hypertension.
Given the complications of my disease, I was told that having children would not be likely for me. Thankfully, I persisted, and today have three beautiful children whom I often refer to as my lifesavers. My pregnancies were not without complications, though. Sadly, one of my four pregnancies resulted in a stillbirth. The three children in my life are Tiffany, Justin, and Adam. After their births, my nephrologist told me my kidney hadn't changed much in fifteen years and that I may have about thirty more years before I would probably need a kidney transplant. He was right.
In the years following the births of my children, my kidney function continued to decline, and I became weaker and weaker. Almost 30 years later, I ended up on dialysis. My son got me an appointment at Beth Israel Deaconess Medical Center in Boston. The doctors and nurses there were incredible. My kids were amazing advocates on my behalf, asking questions to determine the next best step. Soon they, along with my dialysis nurses, convinced me that a kidney transplant was my best option.
Finding a donor
Finding a donor match was a huge obstacle. My three children immediately got tested with the hope of being a compatible donor. None of them were a match so we had to explore other options. I grew up in a family of seven girls so some of my sisters and nieces got tested, others had health issues that prevented them from doing so. No one was determined to be a match.
At this point, I was scared and frustrated and my biggest challenge was staying positive. Thankfully, my children really helped. My sons got on a kidney exchange waiting list, so a possible a donor swap could be an option. In addition to my family support, I started talking to a social worker who encouraged me to begin painting on a daily basis to help with the depression and frustration. I had painted a little in the past. But, because kidney disease caused me to have significant memory loss, I had to re-teach myself the basics of painting and challenge myself to learn new techniques.
After some time, I was advised of a new medical procedure called plasmapheresis that had allowed for my daughter's kidney to now become a viable option, and it was decided that she was the best match. While I was thrilled to finally have an option, I was also petrified that something would happen to my daughter. Tiffany is an opera singer and her voice teachers were concerned that going through surgery could have an effect on her voice. I knew I wouldn't be able to live with myself if something negative happened to Tiffany as a result of my illness.
When the day of surgery finally arrived, my sons Justin and Adam, along with Tiffany's boyfriend, Steve, saw her into surgery and then waited with me until it was my turn. Intent on distracting my anxiety about the surgeries, the kids kept me laughing right until I was about to go into surgery—I couldn't think of a better way to calm my nerves!
Thankfully, the transplant was a success. The kids and I were amazed at how good I felt right away. Before the surgery, I could barely walk across the street. Now, after the surgery, I had so much energy. I was able to walk down the hall to see Tiffany the day after my surgery.
Today, nine years after my transplant, I have some blood pressure problems and have to carefully monitor my diet. I have had a few rejection problems that needed to be managed, but otherwise I am doing very well. I continue to paint which helps me to forget about medications, as well as physical and emotional problems. I have returned to my painting with a strong dedication and openness to new inspiration. It took a lot of people to keep me alive— family, friends, doctors, nurses, scientists creating procedures and medications, social workers, and financial officers. I am so very grateful for all of them. As they say, it takes a village.
This is Lucy's individual experience and is not intended to be representative of all transplant experiences.
Follow @SanofiGenzyme on Twitter to see Lucy's story come together at the 2016 American Transplant Congress (ATC).