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Jessica’s Story

My name is Jessica Cowin and I am a double transplant recipient. I was born with a rare congenital heart defect (hypo-plastic left hear syndrome. I was born with only the right side of my heart. The left side never developed) and when I was four days old I had my first heart surgery. I had three more heart surgeries: 18 months, 5 years and 13 years old. At 13 I had a pacemaker put in. Three years later, at 16 years old, I was in congestive heart failure and was told that I needed a heart transplant. I was worked up and listed. I was lucky enough to only have to wait three weeks before we got the call from the hospital saying they had a match for me and to get to the hospital as soon as possible. It was a total shock that we were called so soon. The doctors had told us that the wait could be six months to a year. We asked about whom my donor was but as we all know, donor confidentiality is strict. All we were told was that a local 15year old girl had been shot earlier that night, she was pronounced brain dead and the family donated her organs. They ended up helping seven other families that night too. Immediately following my transplant, and after three weeks in the hospital, I was feeling better, healthier and back to my old self. I was put on Prograf and Cellcept along with high doses of Prednisone and other antibiotics to control rejection. A year after I received my heart, I was diagnosed with Type II diabetes due to the high dose of prednisone combined with the Prograf. I had diabetes for two years. Once I was able to get off the Prednisone the side effects slowly went away and my diabetes reversed itself with no lasting complications. My health was status quo for the next ten years. My heart was doing great and I hadn’t had any complications or bouts of rejection. I had gone to the ER for severe stomach pain one night and the doctor came back a bit concerned about my Creatinine level (kidney function level). They told me that my cardiologist wanted it watched and I spent a couple days in the hospital. A few weeks later I went back to the ER with the same stomach pain and didn’t leave the hospital for nearly two weeks. During that stay, a transplant nephrologist came to visit me and said “you are going to need a kidney transplant” I was in shock. I never was told that before nor was I told that my kidney function was that bad. My discharge papers told me to follow up with the transplant nephrology team as well as my cardiologist to schedule my routine heart cath. I did. My visit to the cath lab was an interesting one: it was the first time I was ever sent home from a cath. The doctors were concerned that if they went ahead with the cath, it would put me in almost certain kidney failure. They explained further that the die used filtered out through the kidneys and the way it did would be too harmful to them. I left the cath lab with my mom baffled. My health and kidney function declined quickly and within eight months of being told I was going to need a kidney transplant, I actually did need one. My younger sister Amy, gladly offered up her kidney to me. She was a near perfect match. But, my insurance only covered $30,000 towards a kidney transplant and the hospital told us that we couldn’t proceed until we had the funds to cover the rest of the out-of-pocket cost or if we had more insurance. We were not told by the social worker to apply for Medicare at the time. We had to figure that out for ourselves. (Medicare covers end stage renal failure). My family had no idea what to do. So, my sister sent out a facebook message to all of our friends asking for help. A friend responded back telling them about a new start-up business that helps people set up fundraisers called GieveForwrd. My sister got on their site that day and started a fundraising page for me. In the meantime the hospital had cancelled the surgery due to insufficient funds. My sister worked on the GiveForward page for three hours, making sure everything was filled out and all the information was correct. My kidney function was nearing 15% and I was admitted to the hospital again. The doctors told me that I needed to start dialysis as soon as possible. I told them I had to think about it. I was devastated to hear I needed to do dialysis. The social worker had told me that my insurance covered that and I could live on dialysis for as long as I needed to. It took me at least 24hours to make the decision to go ahead and start on dialysis. My sister’s fundraiser was gaining attention and within the first three hours of hitting “publish” she had donations over $5,000. My sister updated the fundraising page almost every day. In the end she raised over $31,000 with the amazing help of Ethan Austin and Desiree Vargas Wrigley at GiveForward, that went to my medical trust fund to help pay for my insurance costs, medications and other hospital expenses. The transplant was back on because my application for Medicare was approved thanks to Mark Kirk’s office putting a rush on the acceptance process. We had insurance and we had donations. During one of the last visits before my upcoming surgery date, Amy and I were told once again that the surgery was being stopped. The reason the social worker gave us this time was because Amy had been fundraising and that she did not inform her and the team she was doing it. Amy and I left the hospital that day terribly upset. A few days later we had another transplant date. I needed to get through a few more dialysis treatments and four plasmapharesis treatments. My kidney transplant was set for April 2, 2009. Nearly ten years exactly from my heart transplant that was September 26, 1999. Three years post kidney transplant, I am doing great. My heart and kidney are stronger than ever.

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