April is National Donate Life Month.To raise awareness about the importance of organ donation and to celebrate transplant donors, we are sharing stories of HOPE from patients and families touched by transplant. Here are our first three transplant stories.
Touched By Transplant: Struggle and Triumph
This is HelpHOPELive client Derek Avillanoza’s transplant journey.
I found out I would need a transplant in February of 2011. I became very ill. My doctor referred me to a nephrologist who told me the bad news, a conversation which I recall still today: “It’s obvious you will need a kidney. It’s just a question of when.” I was devastated. I started dialysis in June of 2011.
Honestly, I didn’t know that much about kidney transplants before I needed one myself. Then reality hit me. I educated myself, and tried to learn about everything concerning kidney failure. I am still learning and educating other people to this day.
My wife and I felt like we were on top of the world when we first found out we were a donor match through virtual testing. We got very emotional. We found out just days before the procedure that we would not be an appropriate transplant match: my body would reject my wife’s kidney because of higher antibody levels in my system. We were devastated, angry, disappointed and heartbroken. But after signing up for a paired kidney exchange, we experienced another cycle of intense emotions, this time positive, when we got the ‘final’ phone call in January of 2015.
I was absolutely nervous before the operation, because I didn’t personally know many people who had undergone a transplant. The transplant team at UC Davis was outstanding and very informative, letting me know exactly what to expect. I asked a whole bunch of questions!
The recovery process has been very humbling and has required a lot of self-discipline as I control my daily ritual. I have to take prescribed medications at a pre-appointed time twice a day, check my vitals twice a day, manage a strict diet to keep control of my diabetes, and fill out a daily transplant diary to monitor physical changes. I have to chart all of the medications I take (18 in the morning, 15 at night). Oh, and then there’s bloodwork twice a week, and a 6.5-hour drive every Tuesday to visit UC Davis. These steps are worth every minute – they extend my life. I am very thankful.
Friends and family have been very supportive, and I’m very grateful for their kindness and love. Without my wife’s constant urging, I would not even be here talking about my transplant today. I believe that we got married for a reason: she was sent down from heaven to be my angel.
I have had to medically retire from my career in government because of my illness. We were advised by the financial coordinator at UC Davis Transplant Center to pursue a fundraising campaign with HelpHOPELive to cover medical and relocation expenses related to the transplant. We continue to work with HelpHOPELive because we’ve started to receive medical bills associated with the transplant, and we are also incurring expenses related to the medications I need to stay healthy.
I am so blessed and grateful to have gone through this procedure. It has extended my life so that I can spend more time with my wife, children and grandkids.
These are the five words that describe my transplant journey: Grateful. Honored. Humbled. Overwhelmed. Emotional.
Touched By Transplant: A Sense of Destiny
This is HelpHOPELive client David Ludwig’s transplant journey.
I really couldn’t believe it when I found out I needed a double lung transplant. I always thought my cystic fibrosis would have been cured before I reached that point. The whole idea of a transplant seemed far-fetched to me, and I knew very little about transplants prior to having one myself. All I knew was that post-transplant, you live on immunosuppressants for the rest of your life. Unfortunately, I didn’t have much time to learn more about my transplant before it occurred.
I never actually received “the call” telling me I would get a transplant. I had just survived multiple emergency surgeries, including a procedure prompted by my lung rupturing which caused me to bleed out internally. I had a pneumothorax while receiving treatment for a cystic fibrosis-related illness, and I was in critical condition when I was transferred to the Keck USC Medical Center for transplant.
My family was very supportive and so were the friends who found out about my circumstances later. My aunt found HelpHOPELive, and she and my mother used my Campaign Page to fundraise for me while I was incapacitated.
I felt very calm when they offered me the transplant. My life was at stake. I remember giving the resident surgeon a thumbs-up when he asked if I wanted the double lung transplant. I had a strange sense of comfort during the entire process, despite having large extracorporeal membrane oxygenation (ECMO) tubes and a tracheostomy tube in my neck and additional tubes everywhere. A sense of destiny and the will to overcome seemed to envelop me during this time.
The recovery has been intensive, partially due to post-transplant kidney failure which lasted for six weeks. I was bedridden for several months, so I lost all muscle in my arms and especially in my legs. I had to learn how to walk again. I’m still building up stamina with my new lungs, and that has been the hardest part of the recovery process.
I have new expenses after the transplant to add to the expenses I have had to manage because of my cystic fibrosis. Now, in addition to anti-rejection medications, I take several drugs and numerous vitamins to offset the side effects of the immunosuppressants.
My future is optimistic. Cystic fibrosis is typically a death sentence, a 13- to 30-year time bomb. These new lungs have spared me from my original fate. I am forever grateful to my donor. My donor’s tragic loss has been my gain, and the same is true for many others. The biggest thing I’m looking forward to is playing a round of golf. Now, I will be able to do it without wheezing or breathing through the proverbial straw.
These are the five words that describe my transplant journey: Hope. Gratitude. Rebirth. Renewal. Happiness.
Touched By Transplant: Infectious Positivity
This is HelpHOPELive client Josie Marie Setters’ transplant journey as told by her father, Chase Setters.
My wacky and energetic 5-year-old daughter, Josie, was taken to a specialist at The Children’s Hospital at OU Medicine in Oklahoma City to evaluate recurring bladder infections. During preliminary checks, it was discovered that Josie’s blood pressure was upwards of 160/90. She was immediately admitted, and two days later, we learned that Josie had chronic kidney disease. Her kidneys were operating at around 30%.
Josie, now 8, remains wacky and energetic despite her diagnosis. Her infectious positivity and silliness have united our community around her. She needs a kidney transplant to survive, and we are hoping to get Josie the transplant she needs in the summer so she can continue to attend school like a normal 8-year-old.
I’m in Information Technology by profession, and I’ve always been a bit of a geek. In early 2015, I posted a Facebook link to Josie’s story and HelpHOPELive campaign. Less than 5 minutes after I posted the link, Wedge, a serial gamer and host of the YouTube channel TheManaSource reached out to me and asked permission to use my story. Next thing I knew, I was tagged in a video that Wedge had created specifically to help my daughter fundraise.
This gesture meant the world to me. Most of us can grasp the idea of selfless giving, but once you witness this miracle in person, it is no longer an idea. It manifests in an incredibly powerful and humbling way, and it becomes almost impossible to express the gratitude you feel towards those who contribute.
We have received donations through HelpHOPELive from contributors across the U.S. One-time strangers who got to know us through Wedge’s video have donated over $1,000 to help Josie. My company of 75 employees pulled together to donate over $10,000, which the company matched.
Is human nature good or evil? Maybe my view has been skewed as I’ve worked to fundraise for my daughter’s lifesaving transplant, but my resounding answer is that our nature is good.
These are the five words that describe my transplant journey so far: Fear. Acceptance. Limitations. Waiting. Hope.
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