“My kidney journey truly began when I was 13 years old.”

It was the first time I needed a physical, I was playing softball and they needed a physical before I was able to play. It was at that time I was diagnosed with Autosomal Dominant Polycystic Kidney Disease (ADPKD). ADPKD is caused by a genetic fault that disrupts the normal development of some of the cells in the kidneys and causes cysts to grow. I will be honest with you, it didn’t really phase me. I went on with my life normally and didn’t think much about my disability until about the age of 16, which is when my mom was pretty sick. I pretty much hated her for being sick and because to me I was looking at my future and for a 16 year old that’s tough. So I pushed her away the only way I knew how; by being a total bitch and a terrible daughter. It was a tough time in our relationship, but we made it through.

It was around this time that I found that some of my friends were musicians. Every weekend someone at my school was having a party and most times there was a band playing. I really began to get into the music scene and since I had absolutely no musical talent, I helped by starting mailing lists (back in the day when you had to put your mailing address on a sign-up sheet then we would make calendars and put them in the mail!). I also organized bus trips for shows that took place in places like Ocean City, Philly, and even a show at CBGB’s in NYC!! I loved organizing those bus trips! Again they helped me become a part of the music scene without being able to play!

By the time I was 19 my mom and I were best friends and shared a million memories together. I continued to enjoy the music scene in Annapolis and then one night my friends band had a show at a club in Baltimore called The 8x10 so we hopped in the car and headed to what would end up being my home away from home for the next 33 years. The 8x10 was a dark, dirty, beer soaked small club with a balcony that kids just loved to hang and jump off of and a bouncer who stood about 6’8” and weighed about 300 pounds. And the sound and the vibe in this club were pure electric energy! I was hooked from the first moment I walked in the door. And even though the staircase to the green room was missing a few steps, and if the air flow was just right, the ladies room door would swing open for all on the dance floor to see, it was still the best place to see live music!

Over the years I lost touch with the club until I moved back to Maryland in 2006 and I began working at the new and improved 8x10. I worked pretty much every position that The 8x10 had, except for sound engineer. I was a box office worker, door person, barback, bartender, manager and I even worked in the office during the day helping with website and poster creations.

Even though I went on to become a restaurant manager for about 20 years and loved it, I spent most of my free time working around music in one way or another. Through The 8x10 I began working festivals, my first one was The Charm City Bluegrass Festival, which I have been the CFO of for the past 8 years. I have also worked The Hot August Festival, The Ramble Festival, The Moonrise Festival, and The Believe in Music Festival.

I lost my mom in 2011 and it turned my world upside down. I no longer wanted to feed people or make sure their dining experience was pleasurable. I left the restaurant industry and went back to college and received a Bachelor’s degree in Health Services Administration and ended up in the Senior Care Industry. I enjoyed that work until about 2017 when my health took a quick and steady decline.

“I knew the reason although very hard to admit. To me it was the beginning of the end...”

Watching my mom go through three transplants and ultimately pass away from this disease, I knew my fate. I went from taking a lot of time off to needing to work on a part-time basis to just not being able to work at all and after almost 2 years of fighting, I was awarded Social Security Disability. My kidneys are approximately 3 to 4 times larger than the average kidneys and this is due to the massive amounts of cysts on my kidneys. These cysts can rupture which can cause severe pain, and/or a UTI or just push on other organs and make it difficult to breathe or to get comfortable which can make sleeping a challenge.

Before starting dialysis, a typical day for me would consist of waking up, and within the first 5-10 minutes of being awake, I would throw up. This wasn’t an every-once-in-a-while thing, this was EVERY SINGLE MORNING! No matter what I did, what I ate or tried to do differently, every morning I would throw up. After getting sick and resting again for an hour or so, I would get up and take my meds (about 10 pills in the morning) then if I had enough energy I would go downstairs and hang out and play with my dogs, maybe clean something or make something to eat. Most days however, I was too weak or sick to get out of bed so I would just lay there and watch TV, maybe do some coloring in my adult coloring books, or watch the birds out my window. Along with the throwing up is physical pain, the cysts are constantly pressing on different parts of my body causing pain, sometimes the cysts feel as though they are being twisted and it is hard to move or breathe.

Once I began dialysis, which entailed having a catheter placed in my peritoneum, the throwing up started to be less frequent and then after about 6 or 7 months of dialysis, it stopped altogether. I mentioned the catheter, this was a big life change that came REALLY QUICKLY and with very little fanfare. I felt like I talked to a doctor about peritoneal dialysis and a week later I was on the table having surgery. I barely had time to think about what was happening and it had happened. Once it hit me that I had a tube coming out of my stomach and it was going to be there indefinitely, it was like a punch to the gut. How could I ever feel attractive again? Would I ever be able to wear a bathing suit again? I can’t get in a pool again? What was I thinking??? This is terrible!! Oh wait…. The only other option is to have 15 gauge needle shoved in your arm (or wherever your fistula is) 3 times a week. And I just couldn’t handle the thought of that happening, so here I am with a tube sticking out of my stomach. And other than not being able to have an intimate relationship with someone, or get in a pool or hot tub, my life is not that different. And I feel better than I did before I started dialysis.

“Now I wait for a match to change my life! And through it all, I have music and my music family to support me in my journey.”

- Jodi