The Waiting List Proposal
DYL Note: Here is the newest proposal I designed for The Waiting List.
The Waiting List
********
"How Many Pills Do You Take?" Photo Project
Another Update from Zona McGee | Brentwood, TNDYL Note: I received this email update from Zona McGee last night. Please keep her in your thoughts and prayers. ******** "David, hope you are having a great start to the New Year! I have finished with the camera and it is ready to be mailed in the morning. I spent New Years eve with a cousin of mine. I briefly talked about the common bond her and I share and I am sending a picture of her and I taken on News Years eve in case you want to use it. New Years day I spent time with my sister and decided to ask her how all this has affected her,I had the camera with me and filmed it. We had just found out a few days ago that Adam, her son is having some issues.. not health related... that might prevent him from donating to me. We are moving forward with the rest of the testing on the 6th of Jan. as planned. But it is looking iffy that he will be accepted. I did receive a phone call from a cousin in Florida who is getting tested as well! So I still have hope of getting a kidney this year! I talked to my Transplant case worker and she advised me to do everything I can to get a living donor in place...even going to to the internet and advertising for one..she said as of now my wait time is at least 5 years for a cadaver kidney. It truly is an up and down roller coaster ride. My sister opened up to me about her feelings on my illness and told me some things I didn't realize. When she told me she wished it was her and not me that was sick and needing a transplant..it broke my heart. Thanks Zona" ******** Poster for The Waiting List
DYL Note: Here is a poster I designed for The Waiting List. My goal is to take the viewer to a common memory, creating a subtle sense of nostalgia -- whether as a father or a son. I love the vagueness in both the photograph and the question posted. This "mystery" will hopefully intrigue the viewer into visiting the website. ******** Scott Robinson | Pancreas Transplant Candidate | Apex, NCThe following video was produced by University of North Carolina at Chapel Hill photojournalism student, Jessey Dearing. It won second place at the monthly National Press Photographers Association Multimedia contest in December 2009.
******** Jen Guffey | Mother of Jax, Liver Recipient (04/21/10) | Imperial, MO
My son Jax, now 17 months old, was diagnosed with Biliary Atresia at eight weeks of age. I had never heard of BA. BA is a liver disease that effects newborns. It's the most common cause for pediatric liver transplant. The more I learned about it, the more hopeless I felt. After watching my baby boy be prodded and poked and tested through the first weeks of his life, after waiting and worrying and crying and praying through his first surgery, after searching the Internet for information and hope, I only found more reasons to worry. As the weeks went by after Jax’s initial treatment operation, he became sicker and sicker. At the time, I don’t think I realized how sick he actually was. He was not gaining weight. His skin and eyes were jaundiced. He cried most of the time and was simply in agony. Jax was hospitalized three times for complications resulting from his disease. During the second hospitalization, Jax was placed on the liver transplant waiting list. To say "10 weeks" now doesn't do that timeframe justice. It felt like a year. Each day was hell as we waited. The "What if's?" consumed me. I was hanging to my faith in God, but only by a thread. I would look at Jax every day and wonder if we were going to make it through. Jax is our second child. He has an older sister, Gwyneth. The first two months of Jax's life he was in and out of doctors/hospitals, trying to determine what was wrong with his liver. We were told 90% that he did NOT have BA. On July 21, 2009 he went in to surgery for a Cholangiogram, to rule out biliary atresia. Ryan and I sat in the waiting room. I remember thinking, "Quit panicking, All the specialist said he doesn't have this. We will be going home soon." The surgeon came around the corner after 20-minutes. I tried to smile at him. He asked us to come into a little conference room. Iit was just him, Ryan and I. I looked at him and I could tell before he said anything. I held onto the table with both hands as he told us that they had to do immediate surgery on Jax. I literally holding on because I felt the room spinning. I remember a group of white coats coming in the room to address questions and being asked to sign a consent form. Someone put a trashcan underneath me because I started to dry heave. My family was there. All I kept asking was "Why me?" What do you do when you feel like your faith is being tested? I didn't know if I was going to see Jax again. I didn't give him an appropriate good-bye. I wasn't ready for this. I didn't think I was strong enough. Jax had the kasai surgery. He was in surgery for seven hours. You can never prepare yourself mentally to seeing your infant in PICU post surgery. I didn't leave the hospital for the next two weeks. After Jax was discharged his bilirubin started to decrease, albeit very slowly but it was going in the right direction. That was enough to give us all hope. Jax continued to do well for several months. Then around eight months, he started having diarrhea. Doctors didn't seem too concerned. We waited it out for two weeks. On a Saturday night, I felt he was becoming lethargic and we rushed him to the ER. They admitted him for dehydration and I thought we'd get it under control and be sent home. On Monday morning, his GI doctor came in the room and began with, "This is never easy to talk about... Jax is going to need a transplant sooner than later." I was so blind-sided that I didn't even cry when she said it. She ended with, "...he has 3 to 6 months." My parents walked into the room to hear the end of the news. We all just sat there. Finally the tears came pouring out. I felt like it wasn't really happening. This wasn't my life. I walked out of the room about 15-minutes later without saying a word to anyone. I got on my cell phone and called my OBGYN to check my blood type. She said I was O+. Then I went to the nurses' station to ask for Jax's. After some hurdles, someone finally told me he was O+. This made me feel like I had some control back and allowed me to grab a handle on this ride. Once Jax got stable; we did transplant evaluation. During the evaluation, they discovered Jax wasn't a candidate for a living donor because he had a clotted portal vein. His only option was a cadaveric donor. Ugh! What?!!! Anger.... I remember the extreme rage I felt. I was mad at God and the entire world. It wasn't fair. The day of final evaluation on the way home from the hospital Jax started crying. I was along with both kids on the highway and had to pull off to try to get him under control. Finally I did and was in a hurry to get him home. I got home and knew something was wrong. We rushed him back to the hospital. He had cholonghitis and was extremely sick. By the next morning he was in so much pain that with every breath he would moan. My 8-month old baby was clinging to the side of the hospital bed in agony. I just sat there next to him and rubbed his hand and head. I whispered in his ear how strong he was and he would feel better soon. They had him on hard core antibiotics at very high doses and he wasn't turning around. He wasn't able to sleep for more than 30-minutes at a time. Every time he took a bottle, he would throw it up. After a week, they decided to do a scan on him. I carried him down to radiology and he saw a fish tank. He perked up and started to smile! Jax was back, even if it was just a little. I saw a ray of hope that morning! After that, very slowly, he started coming around. After a week and a half in the hospital he was stable enough to be listed on UNOS. His initial PELD score was an 11. His team felt like this number was not a true representation of how sick Jax was and wrote for exception points. They put in a central line (broviac) and sent us home two weeks after his admittance on antibiotics. The waiting began. We always used our cell phones but wanted something more reliable since we were waiting for a life-saving call. We got a home phone line. After a week of being home, it was the middle of the day on a Tuesday and I was changing his diaper... the phone rang... my heart sank... my feet became bricks and I couldn't get to the phone. It wasn't "the call." Three weeks after Jax was listed, his PELD went from an 11 to a 25. The average wait time at our hospital is eight weeks. I felt like I was walking around waiting for a bomb to go off. Many nights I would sit in Jax's room late at night and rock him. I would smell his breath, rub my face in his hair, and cry and pray to God to save him. The weeks would pass and I watched him get weaker and weaker. My brain started to do really morbid things. I thought about how I could still give Jax my liver too many times. I would check the local online news every day to see what accidents happened. I thought that every day might be the last day I get to spend with him. I hated the life we were living. I was in the darkest place of my life. My daughter was 4 and took the burden of my stress. She spent most days in front of the TV while I tended to Jax. He wasn't very active but he was mostly inconsolable. On a Wednesday night, when I usually go to bed at 8:30 I stayed up until 11 looking through stories of other children with BA that had been transplanted. I finally decided to go to bed and not long after I fell asleep, my husband's cell phone rang. By the time I got out of bed to the dresser where it was, I missed the call. I realized it was a local number but didn't think anything of a call coming to his cell phone at 12:30am on a Thursday morning. I got back in bed and we both looked at each other briefly, then rolled over. Our home phone rang. I looked up and it said St. Louis Chilrens... Ryan said, "give me the phone." I panted, "No, I got this!" "Hello!" "Hi, is this Jax's Mom?" "Yes!" "This is Julie from the hospital. We have a liver here for Jax. Please come as soon as possible." At this point I collapsed to the floor and threw the phone at Ryan. I was high on life and dying at the same time. I laid on my bathroom floor, trying to make the call to activate our call chain. But I couldn't speak. It took me all of five minutes to pull my shit together and to realize this was it. This was our chance to save Jax's life. I immediatley thought that a family had just lost a loved one and said yes to donate their organs. I got the kids up and we all started racing to get ready. The 20-minute drive to the hospital was silent. I couldn't believe something I had prayed for every day for the last 10 weeks had just happened and I wanted to run away. I was terrified. When we got to the hospital, it was a lot of hurry up and wait. Lots of testing and trying to console a very hungry Jax. Friends and family were flocking in to be by our side for the day. For an hour Jax fell asleep in the hospital crib and I climbed up to lay by him. I spent that hour praying and trying to focus my strength on him. About 12:30 they took us down to pre-op waiting area. The anastisiologist came in, went over the surgery, and said there is a chance he may not make it out alive. I always knew this. But for someone to say it in my face while holding my son broke every last ounce of strength I had. They said they were ready and to say our good-bye's. We all kissed Jax and I whispered, "you be very strong and I love you so much Jax." I told the surgeons to take very good care of him. When I handed him over, Jax started to cry immediately. I coudn't look anymore. I wanted someone else to take the pain because it was too much at that moment. I finally found my feet and we went to sit in a reserved room with our entourage. A call came every hour but I could never answer it. I made Ryan do it because I couldn't take relaying any bad informtion or trying to disifer the tone in the nurses voice. Every time Ryan would take a call, he would hang up and say, "everything is going as planned." I wanted to know so much more but couldn't bring myself ask. It was about 8:00 and we were waiting for the last call to say that they were closing him up and surgery was over. Instead his surgeon walked into the waiting room. At that very moment, I thought Jax hadn't made it. My heart broke. Then Dr. Lowell smiled and said, "he did great. He's done. Give them about an hour and you can go see him." WHAT!?! I charged that man and hugged him with all my might. The entire room roared! We hugged and high-fived. I plowed into Ryan and it was the most elated I've ever felt. Then I turned and saw my daughter standing there. We hugged so tight. She felt it all too. So young but was crying tears of happiness, she knew. She had been praying right along with us. She was the only one when her brother was in pain that he would respond to. When we finally got to go see Jax, I was terrified. I wasn't stunned by the tubes or the huge incision but that he wasn't asleep. He was trying to cry with his breathing tube in and wasn't making a sound. It was horrendous to watch. He had a very restless night with pain. The next morning, when we still couldn't get his pain under control I begged for some pedelite. The team finally agreed but didn't think that he was hungry. OH, but he was. He took an ounze of juice and finally slept for four straight hours. He started taking a bottle again less than 24hrs out of surgery. The days only got better from there. The second day when he woke. He waved and me and when I looked into his eyes....they were crisp bright white. Each day he improved drastically. He started eating and playing. I held him and laid by him. I was on top of the world. Jax was released 10 days later and we haven't looked back since. He's now 6 months post transplant, chubby and a holy terror. This passed year has changed my life in ways I could never imagine. As weird as it may sound I wouldn't change it. I've always said there's a purpose for everything and we were chosen for this. Jax is a new boy with a second chance at life. Here is the KPLR 11 St. Louis news video that followed us the day of transplant: http://www.kplr11.com/news/kplr-liver-transplant-infant-jax-042910,0,4005949.... I started BAaware, an organization devoted to Biliary Atresia information, awareness, and research, as well as bringing BA families together. Since then I have met hundreds of families affected by this disease. They became my support system for the duration of our wait and they still continue to be my hope everyday.
******* Dawn Byars | Heart Recipient (5/28/10) | Los Angeles, CA
Dyl
******** My name is Kathy Streber and I'm waiting to get on the waiting list for a lung transplant.In the chronological history of The Waiting List, this video about Kathy Streber was the first one produced by someone other than filmmaker Erik Murphy and myself. My friend Jenn Poggi, then the Ohio University School of Visual Communication Knight Fellow, volunteered to share Kathy's story over the Christmas holidays when she returned home to Rochester, NY.
******** DYL Note: On November 22, 2010, Kathy emailed me: "I have ALSO now been told in so many words that I'm not to be on the list (too frail??!!) After keeping me coming down here for 4 years, I'm soooo disappointed." ******** Karen Range's One-Year "Re-Birthday"DYL Note: December 1, 2010 was Karen Range's one-year anniversary for her lung transplant. Or her "re-birthday" as she refers to it. I like that -- "re-birthday." I asked Karen to reflect, as well as share a photograph taken on December 1.
Presently 1,599 people have viewed Karen's story, as produced by Ohio University School of Visual Communication photojournalism student Maddie McGarvey:
From Karen Range: "It's hard to believe that one year ago I was struggling to breathe. Struggling to do ordinary, everyday things that most people take for granted. I remember clearly last Thanksgiving. It was a sad day. My favorite aunt and passed away after a long battle with Lupus and Heart disease. I was lugging around my oxygen tank and feeling just a little bit sorry for myself. I had no hopes of getting my new lungs before Christmas. I had just put it out of my mind and was trying to enjoy the holidays as much as I could being limited once again in everything that I did. I was trying not to dwell on the fact that once again my son would have a sick mommy at Christmas.
Little did I know that God had other plans for me. On November 30th, 2009 (Sunday), I went through the day like any other day. My husband and son went to church. I was all alone - just me and my oxygen. My parents were in Florida attending my aunt's memorial service. It was a dreary, cold day and I could feel the chill in my bones. I got through the day like so many of the days before. I basically slept my days away. The evening came and went and soon we were all off to bed. None of us even had a clue that this day was a tragic day for a family that we didn't even know.
That night I fell asleep right away. That was unusual. Normally I had a lot of trouble sleeping. I was not at all surprised when I woke up a little before 2:00 am. I had this strange feeling that our phone was going to ring and that Cleveland Clinic would be on the line telling me that they had lungs for me. A few seconds later, the phone actually rang. It was Cleveland and they asked me to come to the hospital as soon as I could get myself together. Wow! I was blown away. That was the last thing that I expected that night. We got up and got moving. They did call back to tell us that we didn't have to be there until 8:00 am. That was a relief because then we could take our time getting ready and getting there. What amazed me was that I was so calm. I had 2 dry runs before this and I was so uptight and so nervous. This time I was able to function and think clearly. We called all our family and made plans. My parents had to fly home from Florida. I knew that this was it and that Dec. 1st would be the day that would change the rest of my life.
As we drove to Cleveland, I remember the only time that I cried was when I thought of my donor and donor family. What had happened? How were they dealing with the death of their child? How could they see through their grief to be able to donate organs. Why was I so blessed to be given such a precious gift? I cried and prayed. My husband held my hand and silently cried with me. I am not sure at that point if we were even worried about the huge surgery that I was facing. We were both so emotional about the death of my donor.
Once we got to Cleveland our thoughts shifted gears very quickly. Things moved fast. There were so many doctors, nurses, surgeons, anesthesiologists, lab techs, social workers, and so on in and out of my room that it was a whirlwind. I remember clearly not feeling scared or anxious. It wasn't until I was taken into the elevator that my emotions got the best of me and tears ran down my face. The anesthesiologist was so kind to me. He kept me talking so that I would not wig out on him!! After that, I don't remember much until Dec. 3rd when I was un-sedated. What I remember most prominently when I woke up was that I could breathe! The next thing that I felt was that these lungs had come to me with a lot of love. I felt loved and I felt at peace. I don't even remember being in pain. I just remember thinking, "thank you God for this incredible miracle." My recovery progressed at record speed and I was home on Dec. 23rd celebrating Christmas with my family.
It is now one year later. As I look back on my journey, I am totally amazed at what has happened over the last year. I went from being a person that could barely walk from the bathroom to the couch - to a person that can do anything she wants to do. I have even been taking a dance class (Zumba) since September. Every morning when I wake up, I am amazed that I can take a full breath. I can get out of bed, brush my teeth and comb my hair with ease. Once again I can run circles around most people. I could list off all the things that I can do, but one thing that I do everyday is thank God for saving my life through the generosity of my donor and donor family.
I think of my donor and my donor family a lot. I think about how hard it must be to get through the holidays. How much pain they must still feel. As I celebrated my "re-birthday" today, I also knew that there was an amazing family out there that was grieving. For me it was an anniversary to celebrate my life. For them is was an anniversary to mourn a death. It is the epitome of "bittersweet." It made for very mixed emotions that I could never explain in words. I wanted to shout from the mountaintops and cry like a baby all at the same time.
I will forever be grateful for the gift I have been given. My prayer is that one day my donor family will be able to respond to the letters that I have sent them. It would be a great honor for me to meet them one day and tell them in person what their gift has done for me and my family. I truly believe that Organ Donation and transplant not only affects the recipient, it affects their families and friends too.
If I had to sum up my thoughts on this day that I was given a second chance on life, I would have to say that our family experienced a true miracle. I know that you might think I am pushing it a little, but I also think that the donor family experienced a miracle too. Life does come to an end. We never know when or why, but we know that it is inevitable. I believe that Organ Donors are special angels that God has put on this earth to do a very important job. They are the blessed ones that get to be a part of an incredible miracle. They have a job like no other - to give life. I believe that Organ Donation is the greatest gift one human can give to another. Call me crazy, but being chosen to save a life is definitely a miracle.
I thank God for being a recipient of His miracles and I thank God for sending me a special angel to bring me my miracle.
Thank you my precious donor!!"
Bryan Stewart | Liver Transplant Candidate, Waiting Since 2009 | Charlotte, NCDYL Note: When Bryan initially participated in our Interview Series video project, he was still on the organ transplant waiting list. As I was editing his interview, Bryan notified me that he had gotten the call and received his new liver. So for me, his interview has an interesting reflection quality to it. ******** Q: Describe receiving the phone call from the hospital notifying you about the available organ. ******** |
|
