Mike C.

Adult, FSGS

In spring 2012, during my senior baseball season at Plymouth State University, I was diagnosed with FSGS. This disease abruptly cut my baseball career short, never to see the field again. I went on to graduate and was hired as a teacher. For the next 2.5 years, I was constantly sick, fatigued, and swollen, which made it very difficult to live my life, let alone work. To add to the matter, I was living in New Hampshire away from my family, making monthly trips to Boston and New Jersey to see my nephrologists. This was a huge strain, both mentally and physically.

Finally, in 2015, my doctors and I decided that I would try plasmapheresis with Acthar injections. Late in 2015, I resigned from my teaching position and moved back to New Jersey with my parents in anticipation the plasmapheresis treatment would remit the FSGS. Unfortunately, after two short months, my kidneys were starting to fail and the treatments were abruptly stopped. This was heartbreaking news to me. Shortly after, my nephrologist and I spoke about dialysis treatments, and I decided to go the hemo­dialysis route. It took five surgeries to finally get a properly functioning fistula placed in my arm, and it caused many scars. Sometimes the buzzing from my arm keeps me up at night.

In between all of those surgeries, I was able to apply and be listed at three hospitals on their deceased donor lists. Unfortunately for me, both my parents were not able to donate, and I have been struggling to find a donor. In December of 2016, I started dialysis, and am presently still on it. To pass the time, I started to pursue an MBA at SNHU, and I volunteer as a baseball coach for my alma mater high school. Along the way I found a great girlfriend that has helped keep my spirits up. She has been extremely supportive since day one, and I am forever grateful to have her in my life. We have been working hard and reaching out to various media outlets across New Jersey to help spread the word, in hopes that one day I can return to living the healthy and active lifestyle I once lived.

Develop a schedule using your phone to take your medications. Also, eat/drink in moderation. When at the grocery store, read all the labels and learn how to cook salt-­free; this will help. Lastly, talk a walk every day to help clear your mind. Always stay positive!