In 2014, my friend Ro received the gift of a kidney from her brother. We’re featuring her story here and on our Facebook page, A KIDNEY FOR SHARON.
I had been diagnosed with Systemic Lupus back in 2000, after a few years of arthritis-like symptoms. It was in 2004 that tests uncovered that the lupus was starting to impair my kidneys. Kidney damage is a very common long-term problem, and the effect can really vary person to person. I got hit hard: my kidney function was about 60% when I started treatment in 2004 and it dropped rapidly from there, leveling out at 40% around 2007.
I was hoping the stalemate would last forever, but my kidney started declining rapidly again around the end of 2012. It affected every other system in my body: my bones weakened drastically and I suffered repeated fractures, my bone marrow stopped producing red blood cells and I needed two blood transfusions, the anemia got so bad that I needed additional shots every other week for my body to produce enough red blood cells to barely function. I gained weight, slowly at first, but then my legs swelled up, pressing against my skin like a drum. I didn’t know until I was admitted that it was water weight from my kidneys not being able to pass fluid out of my body.
It was right before Thanksgiving when I went to the hospital and was told that my kidneys were shutting down; my organs were literally drowning in my own fluid. My heart and lungs were springing internal leaks from the pressure. They took me to surgery, implanted a dialysis catheter in my chest and started hemodialysis the same day. They let me go on Thanksgiving, after arranging for me to continue dialysis at a center near my home.
I went to dialysis for three hours, three days a week for seven months. All that time I had to wrap my catheter in plastic to take a shower, monitor every single drop of liquid that passed my lips, and strictly monitor what I ate. My weight dropped from 220lbs to around 185lbs – and it was all backed-up fluid. I was frequently nauseous, and often weak in the beginning. My first catheter got infected. The infection got into my blood stream and threatened my heart, so I was hospitalized for 12 days to cure it. My mother spent her birthday that year in the hospital with me and my whole family missed Christmas with my aunts and cousins that year.
I didn’t even realize how it affected my family and friends. Apparently my brother cried the first time he saw me hooked up to the machines. My mother was half-hysterical the whole time, only finally starting to relax once we had a routine and I was showing little signs of improvement. My friends didn’t even see me for several months and were genuinely worried that I wouldn’t pull through.
I was on the transplant list, like thousands of others in the New York area, but my doctors were not optimistic about me getting a kidney anytime soon. And I was told that the longer a person on dialysis waits for a kidney, the harder a full recovery can become. The best chance was for me to find a living donor as soon as possible. Both my parents tested and were disqualified. My father spread the word through his radio show in the hopes someone would step forward. Finally, my brother decided to donate and he was found to be a perfect match.
I had my transplant on May 28 2014. We had our 1 year anniversary on May 2015. The changes I’ve experienced have been enormous. Little things that were so common while I was sick have vanished and I’m on less medication than I’ve ever been before. And while a transplant, like dialysis are not cures – it’s a second chance that I didn’t think I’d get.