When I was 17, I was told that a liver transplant would be my only chance at living due to severe gastrointestinal bleeding. This was a hard thing to hear at that age. As I waited for “the call” over the next 11 months, I did my best to live a normal life. Attending school and seeing friends, along with working a part-time job, helped keep my mind off things as much as possible. My parents have always said that getting up and moving around would make me feel better, and it usually did.
I went into liver transplant surgery on October 16, 2007. I was extremely weak after waking up from my 10-day induced coma. I was 18 and I had zero muscle -- I couldn't even take a sip of water or sit up in bed. It was very frustrating and depressing. However, with family support and physical therapy, I slowly regained muscle. I wish I would have known that my life was going to be put on hold for a year. I was immunocompromised, so I had to stay home from college, which set me a year behind all my friends.
Shortly before I turned 23, I was put on the kidney transplant list. I was so ill at my pre-op visit that I was hospitalized for two weeks prior to the surgery. Fortunately, one of my doctors -- a college basketball fan -- and several nurses joined me to watch games during March Madness. One of the nurses made cupcakes for my 23rd birthday. These small acts of kindness helped me cope before my kidney transplant.
My father gave me one of his kidneys on April 3, 2012! The recovery was easier than it was after my liver transplant, however, it was still tough. And while the transplant happened so far into the spring semester, I was fortunate that my professors agreed to work with me so I could complete my work by summer's end.
The hardest period of my life was leading up to my double-lung and second kidney transplants.
I had always been active and -- although my lungs had stayed fairly healthy -- by February 2016, I heard my doctor mention a lung transplant for the first time. The day I was told, I was by myself because my parents were working and couldn't accompany me to the appointment. Hearing the words “What do you think about a lung transplant?” was a real eye-opener. My response that day was, “Sure, that's fine.” I tend not to show a lot of emotion. But, inside, I was in turmoil. I knew my lungs were getting worse, but I figured I'd be able to do IV antibiotics and exercise my way back to being healthy.
At age 26, I required oxygen everywhere I went. I did my best to recover lung function so I wouldn't need the oxygen and -- at first -- I was improving. I was doing CrossFit three times a week, going to a gym two days a week, and working as an accountant. But within three to four months, I couldn't walk from my bedroom to the kitchen without gasping for air. The first day I took my oxygen tanks into work was really hard -- both physically and emotionally. I had to walk upstairs so I was out of breath, and seeing my reflection in the computer screen with a nasal cannula while I gasped for more oxygen really sucked! I wanted to quit and go home!
I was lucky that I worked with such great people. They told me to work as much as I could and not overdo it. Continuing to work made me feel like I was still a valuable person.
I became ill in August and spent the rest of my time waiting for my lungs and another kidney from a hospital bed in the ICU. I was on extracorporeal membrane oxygenation (ECMO) for 14 weeks before my transplants. ECMO is similar to a heart-lung bypass machine used in open heart surgery; it allows the lungs and heart to rest. During this time, I had to be very careful and move as little as possible, unless the nursing team was assisting me. With the aid of an army of medical personnel, my surgeon wanted me to walk one mile a day. The nurses, respiratory therapists, nurse practitioners, and doctors gave me the encouragement I needed to continue living. We formed true friendships and we still connect on Facebook.
I received lungs on December 20, 2016 and a kidney the following day. I was finally off ECMO, but I had a tracheostomy and was on a ventilator. Coming off the ventilator was the hardest thing I have ever done. I had needed it for so long that I now felt like it was my best friend. My favorite respiratory therapist called it “tough love” and eventually took away my best friend at that time and opened up a whole new world for me. After three months of weaning, I was finally off the ventilator.
Recovering from my lung and kidney transplants was physically draining, but I had never had such a difficult time emotionally. The first time I saw myself in a mirror, six weeks after surgery, I didn't recognize myself. I looked terrible; I was extremely skinny. I had lost nearly 40 pounds. At first, I was embarrassed to have visitors outside of my immediate family because I didn't look like myself. I'm glad I overcame this because my friends didn't care what I looked like, they were just glad that I was alive and ready to get me back to my old “healthy” self.
I spent the first year after transplant trying to regain strength -- and getting used to being a dialysis patient because my kidney failed soon after transplant. Dialysis three days a week is very tiring but I still manage to work part-time.
Over the years, I have tried not to let CF, multiple transplants, kidney failure, or any other illnesses define who I am. Instead, these are things that have helped shape me into the person I am today.
Facing several different health issues has helped me: learn not to fret the small stuff; be sure to take advantage of every opportunity I have; to not worry what people think about me or my scars; and to be grateful and thankful for everyone and everything in my life.
Despite all of the challenges I have faced, I managed to obtain a BS in accounting, a MBA, and a certificate in computer coding from Georgia Tech. I have also made many new friends and gained new respect for members of the medical field.
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