| Our Story
It was the end of the summer of 2008, August to be exact. I sat there in my cubicle looking at my computer screen with a blank stare. I started to think about my father. I wasn’t talking to him for some time. We had been out of touch and it bothered me.
Suddenly, I received a phone call from my sister. Her voice was troubling and she sounded concerned. It was about my father. She had told me in those few minutes that our father wasn’t doing so well. He was told by his doctor that he had 6 months to get a kidney transplant otherwise he would have to go on dialysis. I knew he had been diagnosed with chronic renal failure a couple months ago. She stated to me that he had registered with a hospital in Manhattan to be on the national waiting list in New York.
She said that he thought this was his only option. We spoke about how we were tested in the past as a family. Unfortunately, we were all incompatible with our father’s blood type. Her words inspired me in those few minutes that we spoke. I felt that I had to respond. After all, he was my father and it didn’t matter to me at that point if we were talking or not.
I had worked as a nurse five years prior to changing careers. I now worked in finance in Manhattan. I knew the national waiting list (UNOS) was 2-5years to receive a kidney. I also knew that if he waited that long, he would surely be on dialysis. Lastly, I knew when the time came for him to receive a transplant, it would be from a cadaver. I didn’t want to see my father suffer through dialysis or wait on a list. I knew dialysis would take a toll on his body. None of these choices were an option for me. I kept thinking to myself that there had to be a way out of this mess, a quick fix. I knew there had to be an alternative way to save my father. I couldn’t live with the fact of knowing that I didn’t try to save his life when I had worked in the profession. After all, this is what nurses do, they respond to medical situations and act upon them in the hope of saving a life. I knew I had to respond to my father’s suffering and pain. It was the right thing to do.
So the idea came shortly after getting off the phone with my sister. We both agreed that we would use a web site called craigslist to find a donor for our father. In the past, we had used this website for finding jobs, selling furniture and finding childcare. It was even a community for meeting people, contacts and friends. Lastly, it was a great outlet for gaining exposure as it serviced people within the states and those outside the United States. It was a website that you could use as a marketing tool. You could create ads for free. It was great because you could choose where to place your ad and in return you received great exposure. The website had been quite successful in the past, so we figured why not for our father? Why not for a living donor for dad? So our search began in the hopes of finding that special person.
I started typing away at my desk at work. The ad read “Please help me find a kidney for my dad.” It sounded desperate but it’s what came to my mind at the time. I also placed all our personal contact information on the ad. I knew he didn’t have much time as I remembered my sister telling me that he had 6 months to receive a transplant otherwise he would need dialysis. Those words scattered through my head like butterflies.
A week went by and one person responded. It was a man from New York City. He stated that he worked in substance abuse counseling and wanted to help. He wanted to donate. After speaking with him over email and over the phone, he sounded odd. While speaking to him for about a few weeks, his stories would change and he was never consistent. It turns out he was mentally sick. I kept posting ads along with my sisters, thinking to myself that there was still hope.
It was now fall and the leaves were more beautiful than ever. It was the changing of the leaves that reminded us to continue on our search. It gave us a feeling that this was a time of renewal and so we began posting more ads. A few days later, all of us received several emails from numerous people who were just reaching out. It was quite amazing. Then came the few people that wanted monetary rewards for donating their kidney. We knew that selling organs was illegal and so we dismissed them. Out of the disappointments, came words of encouragement and empathy. It was great to see these people reaching out to our family and to our father. People were also praying for us from all over the United States. They helped us deal with the disappointments as we continued on our mission to save our father. They gave us hope and that is what kept us going.
Finally, it was October and a local news radio reporter saw our ad on craigslist. It just so happen that she was an old classmate of ours from school. We hadn’t spoken in years. She wanted to interview my sisters and I along with my parents. She thought the story was compelling and that she would be able to relay the message to the public. She had stated that once we completed the interview, we would be getting more media attention along with obtaining more donors. The interview went really well although it was extremely emotional for all of us.
A day later, our cell phones would not stop ringing .We started getting reporters from all the national news stations. I had to leave work in Manhattan as my sisters arranged the media to come to my parent’s home. They soon came in hordes wanting to hear our story. They interviewed us and shortly after we were on national news along with being in the local newspaper. We couldn’t believe everything that was going on.
We were shocked that our idea had brought attention to so many people. The reporters couldn’t believe what an amazing idea it was to post an ad on this website for a kidney donor for our father. They had stated that the website had never been used as a medical venue before. Once again, we didn’t know this. We just posted the ad because we knew we had to find a way to save our father’s life. It only came natural, as it came from our hearts.
In the days that followed, we received numerous calls. Most were within the United States however some were international as well. People kept contacting us wanting to donate. We started to compile a list. Many fell through the cracks as they had medical issues or just weren’t genuine donors. Some were scams. We also were working with the hospital that my father had registered with in Manhattan. They started giving us problems with the few donors that we had. We soon realized that the hospital that we were working with didn’t believe in altruistic donation. However, they had told us on the first interview that they were open to it even though they didn’t do many unrelated kidney transplant surgeries. We actually don’t know the real. truth. For 4 months, they left us thinking that everything was fine and that they accepted our situation. However many times, their communication with us was unprofessional and unpromising. We felt that they also didn’t like the fact that we had control over the situation. We had found an alternative way out of the “medical module” to obtain a donor for our father. You would think they would be proud of our efforts, however they were not. They led us to believe all along that they would do the surgery and yet it never happened. Lastly, they scared off our donors by giving them false information and stating to them that we were compatible with our father. They also pushed their kidney SWAP program on to our donors while stating to them that my father wasn’t even on dialysis yet. They wanted to use our donors for their SWAP program so they could increase their kidney transplant surgeries it seemed.
In return, they would be gaining publicity. It was all about money and recognition for them. They didn’t care about our father or our situation. Once our donors notified us of what the hospital was saying to them, we immediately contacted the transplant team. But of course they denied everything. So with all the chaos, the few donors we had became disinterested and fed up with waiting for the hospital to get back to us. As a result, we lost our donors. We were now back to square one.
Despite the news, we just kept remembering the positive people that continued to reach out to us. We decided it was time to find another hospital however we had no donors. So the search went on and my father was getting weaker. I began giving him Procrit injections every weekend where as before it was every other week. I began posting ads along with my sisters every day in almost every state I could. We started to change the ads around so that we could expand our search.. It was now January 2008, as I sat there once again at work in my cubicle focused on getting a donor for my father.
After a few weeks went by, our cell phones were ringing again. People were responding from everywhere, willing to donate. We figured this time around, we would screen them more thoroughly. We began asking them why they wanted to donate, their past medical history and their blood type. We then responded to them through email and contacted them over the phone after each of us left our 9-5 jobs. Every night from then on, we continued to receive potential kidney donors. As a family, our nights consisted of talking about these donors and finding a hospital. My relationship with my father began stronger as I continued to fight for his life along with my sisters.
My sisters began going to the local hospital’s meetings on kidney transplants and met someone who had been a living donor. He had given his kidney to someone outside of New York and had the transplant done at this local hospital. The person he donated his kidney to was someone he found in the local newspaper. He referred us to this hospital right away as he wanted to help us.
We immediately started to set up an appointment to meet with the transplant team. They greeted our father with open arms and stated that they believed in unrelated living donation. They stated that they had done these surgeries quite frequently. In fact, this man my sisters had met was the first living donor to donate to a patient in the kidney transplant program at the hospital. This was very exciting to us. As we finally had found a hospital that was willing to work with us. So we began coordinating my dad’s evaluation along with scheduling these donors to get their blood drawn. We had to arrange a blood kit to be sent to our donors out of state under the hospital’s direction.
From there, they would get their blood tested at their local lab or doctor’s office. Instructions were also enclosed in the kit that the hospital sent out. Once the donors received the instructions with the kit, they were told to contact the hospital. After getting their blood tests done, our donors had to also FedEx their blood back to New York. The blood had to be obtained and sent to New York within a 24 hr time period as the blood was only good for 24hrs. With time on our backs, we had two great potential donors tested outside of New York. Unfortunately, one donor disappeared and the other continued to work with us.
It is now May and we did have one donor who was working with us for a while. Unfortunately, she has recently been ruled out due to medical reasons. We are now searching for another donor. Many people are reaching out to us as we search for a new donor. It has been very stressful but we know there is hope out there.
It is now July and we have two donors who are in the primary stages of testing. We are hopeful as it has been a long journey for all of us. We will know in a week or so, if we have a surgery date.
Well, we just received bad news that one of our donors was ruled out at the last moment for medical reasons. We are now working with our second donor in California.It is quite stressful and fustrating knowing that the end seemed so near with our last donor but we can only move forward as we have faith in knowing that everything happens for a reason.
It is now November and we have been told our donor is cleared from all secondary testing! We are awaiting surgery for early December here in New York. We are all so excited and happy that we have found that special person. It is a life changing event for us all. Our father is now alive due to the kindness of a beautiful woman.