I was diagnosed with Primary Sclerosis Cholecystitis over 20 Years ago. My initial diagnosis foretasted that I would require a transplant within 7 years. I luckily experienced many more years than the initial diagnosis and I am grateful for the time I had prior to my true need for the transplant. Approximately 3 years ago I began to experience esophageal varieties which led to cirrhosis of my liver. After many procedures to repair the varieties - I experienced hepatacellular carcinoma on my liver which was treated with chemo beads through a TACE process. After a 6 month watch period, my cancer was stable and even reduced enough so that i was able to be listed on the transplant list. Through the grace of God, I received a second chance at life through the selfless actions of a strangers family who donated the organ I now have within my body. I have had some difficulty in my recovery and I still have a way to go, but it's all worth it and it's time for me to give back and help others who may be in need of a lifesaving organ donation.
I grew up with a sick father. He had heart disease and everyday was a struggle for him. He went through countless hospital visits, surgeries, and sicknesses, and there were a few times in his life that we didn’t know if he’d make it through. One such moment was the spring of 2009. He was on the heart transplant waiting list at the Cleveland Clinic and he only had a few short months left. I was only a young 8 year old girl but I was already very familiar with what was going on and what he had been through. Many times I had to say goodbye to my dad because the doctors didn’t think he’d make it through the night, and be it by a stroke of luck or some divine intervention, he always pulled through. When we got the call that he had a new heart waiting for him, a feeling of relief swept over me and my family like a raging river. My dad’s life was saved because of the selflessness of someone else. I am still so grateful for the donor who extended his life. My dad lived another 9 years with his new heart. He was able to see me graduate from high school, and for that I am forever grateful. After his transplant, he wore a small green bracelet that said “donate life” on it. He wore it everyday for 9 years until he died. I wear that bracelet now. It is a reminder of how precious life is and how one small check on a drivers license can change someone’s whole world. Join the organ donor registry. Be that person who extends a life.When he passed away earlier this year, he was able to donate his tissues and corneas, which is exactly what he wanted. That’s how much organ donation impacted not only him, but our whole family. I don’t like to think of his life as being cut short, but rather extended due to the doctors and especially the donor that saved his life.
During my 20 week ultrasound, an area was found on our son's liver. Further testing revealed that our son had a mass on his liver, later diagnosed as a benign tumor called a messenchymal hamartoma. We relocated to Cincinnati when I was 36 weeks pregnant so our son could receive care at the Cincinnati Children's Hospital. After birth, the tumor was thought to be a congenital hemangioma which is a vascular tumor that shrinks on its own after birth. Only the tumor did not shrink. Instead it grew larger. A biopsy was performed when Brooks was 4 weeks old and an official diagnosis was made. The tumor was benign, but rapidly growing. He needed a new liver and he needed it yesterday. He was emergently placed at the top of the transplant list. He was in respiratory failure. Renal failure. Heart failure. Our 5 week old baby boy passed away in our arms on March 16th, 2018 just days after being placed on the transplant list. If I could've given him my liver I would have. I couldn't give my son what he needed to live. So I am committed to learning and educating others about organ donation in honor of my Brooks. I could not save him. But I hope that my efforts can save someone else.
My sister, Cassie lost her life unexpectedly at the young age of 24, in February of 2015. I never imagined I would have to make so many drastic decisions surrounding the death of my baby sister. I chose organ donation for her because I knew her heart better than anyone, and I was confident it would've been what she wanted. I have never regretted that decision. In fact it has opened my eyes to the growing need of people that are willing to give the gift of life to countless others awaiting transplants. Advocating for Donate Life has become a passion. It has helped with my grieving, helped to honor my sister and share her story and also given me the push I needed to register for organ donation. She literally saved someones life and you can too!!
Rachel the day after her transplant My name is Rachel and I am from Laurel, MS. When I was 13 months old I was diagnosed with crescentic glomerulonephritis. At the time (and possibly still), I was the youngest person ever diagnosed with that disease. To this day, doctors still do a double take when they read my chart. I was on dialysis for almost a year and was taken to Minneapolis, MN for a transplant on December 13, 1995 at 23 months old. My father gave me his kidney and I am now 21 years post transplant. Rachel with her parents now .
I’m Kara Bauereis, and I’m a Neuro & Neuro-surg ICU at University of Kentucky. I have the honor to work with Donor Families, KODA & the mission of organ donation. This is especially personal to me because I’m also affiliated with this mission as a wife. My husband is a double lung recipient. He received the gift of life in May 2013 due to Cystic Fibrosis. Today, he is doing phenomenal. He’s an Anesthesiologist at UK. He love hunting and was able to travel west and go 30 miles into the mountains thanks to his transplant. I am an advocate for the gift of life. I’ve seen the impact on makes on donor families and recipients. I am honored to share our story and want to help, in any way, to promote this mission.
I was diagnosed with hypertension in my early 20's, over 30 years ago. I also was a runner and took ibuprofen and other NSAIDS over the years. In addition to running pain, I had headaches for several years due to a benign brain tumor called a colloid cyst, another condition for which I took more NSAIDS. The tumor was removed in 1996, the same year I married my husband who came with two beautiful bonus daughters. Over the years, my doctor watched my creatinine creep from 1.3 to 1.6 to 1.8 and then level off for several years at 1.9 to 2.0. Then in 2012 and 2013 my creatinine began fluctuating. In the fall of 2013 my doctor told me I needed to see a nephrologist. I was simultaneously writing my dissertation for a PhD in Engineering Project Management. We held off for six months so I could finish my dissertation. In June 2014 I saw a nephrologist who said, "Let's see if we can keep you off dialysis." I was in Stage 4 Chronic Kidney Disease, and rapidly heading to Stage 5. I began researching kidney disease, including obtaining kidney diets and kidney foods from the nephrologist's office. We were able to slow the progression through diet and medication - lots of medication. The kidney biopsy in July showed the damage due to NSAID use and hypertension. My physical condition continued to deteriorate. The doctors asked which type of dialysis I wanted. Like most kidney patients I wanted to avoid dialysis. Dialysis is a hard way to live. So I said, none, thank you very much. I'm terrified of needles, so my biggest fear was the thought of a dialysis system inserted somewhere in my body. I pressed on trying to manage kidney disease without dialysis. Kidney disease caused me to gain weight; swell everywhere; breathing was difficult; walking was difficult. I was able to continue working through this period, and I successfully defended my dissertation, earning my PhD in October 2014. In summer of 2015 the nephrologist referred me for transplant. We met the transplant team at the University of Cincinnati in September. I was in a hurry to avoid dialysis, so I completed all the necessary testing in a few weeks, and was listed on the national kidney transplant list on October 21, 2015. One of my bonus daughters, Christina, was tested during the fall of 2015 to try to see whether she could donate a kidney to me. She was not a match for me because I have high antibodies. The transplant team explained I would be a potential match for about 24% of the population, and then a perfect match was near zero. In fact, my "match power" was zero due to high antibodies. Match power is one of the metrics used to gauge potential donor matches. I agreed to enter a study at UC to try to reduce antibodies through a process called apheresis. The one fear I had of the hemodialysis port [...]
Glenn Acree is the chief Judge in the Kentucky Court of appeals. He began losing his eyesight at a young age, completely turning his life upside down. In the two letters below, he expresses his grattitude to both the Kentucky Circuit Court Clerks for asking the questions, and the Donor family for their generous gift. To the donor family he writes: "It will not be enough for me to say to you how sorry i am for your loss. Such words of sympathy, no matter how well intended, do so little to ease the pain of losing a child." "However, I would like to express, in addition to my great sympathy, my great gratitude. Today, thanks to your son's gift, I can see. For the first time, I can see clearly, the details of my own son's face. The curve of his smile, and the twinkle in his eye. I have your son to thank for that..." He writes in his thank you letter to the Kentucky Circuit Court Clerks: "About twenty five years ago, I began losing my vision. While never totally blind, my vision had deteriorated so that my life had thoroughly changed. Practicing law was more difficult than ever. Seeing clearly the details in the faces of my loved ones was merely a memory. I can't begin to tell you the number of little challenges that surprised me on a regular basis." "But then, eye surgery returned my sight to me. I have thanked the family of the organ donor. Now it is time to thank you." Thank you, Judge Acree, for sharing your tremendous gratitude! Read the full letters here: Letter from Chief Judge Glenn Acree
My son, Jacob Lee Gilbert, was diagnosed with Restrictive Cardiomyopathy, when he was 18 months old. Through many heart breaking doctors appointments, hospital stays, and tears, Jacob stayed string and happy. Always a smile on such a precious face. After being on the heart transplant list for 16 months, Jacob was removed from the list because the doctors did not feel like he would make it through the surgery due to his declining health. That left us just waiting, knowing that our son would pass away and we didn't have much time. We spent the rest of Jacob days taking him everywhere he wanted to go and making precious memories. If a heart would have been available for Jacob during that 16 months that he was on the transplant list, then maybe I would be holding my son in my arms today. Instead, I go to a cemetery and sit on a bench that we has made.... and talk to my son and cry. He will always be in our hearts, he will always give us a need to promote organ donation so that maybe one more mommy or daddy, or sister or brother, don't have to cry themselves to sleep because their is a huge part of them missing.
When we moved to Lexington in 2012, we left behind our entire lives in Pennsylvania. We left behind friends and family. We worried that our two children would have trouble adjusting to a new home, 600 miles away from everything familiar. Just two months after our move, Ryan's health problems began. His blood sugar became difficult to manage, causing his endocrinologist to switch him from insulin injections to an insulin pump. He began having trouble with his vision, and needed surgery on each eye. He spent six nights in the ICU after a low sugar seizure, causing a 911 call at 11pm. Two other 911 calls were made over the course of three months due to low sugar episodes. Ryan also became very anemic, and after a lot of tests and appointments with various types of specialists, Ryan's kidney disease was diagnosed. In March of 2014, Ryan was placed under the care of University Hospital's transplant team in Cincinnati, and our journey to finding a match began. I received a call from our transplant coordinator, Darlene, on October 10, 2014 at 10:30am. “Bridgit, we might have something for Ryan.” My heart began to race, and a barely audible “okay” was all I could manage. My 4-year-old daughter, Lily, and I had just pulled into the parking lot at Kroger. Darlene continued, “I need you to stay put and be ready. Pack a bag. I should know more this afternoon, so just take a deep breath and be ready to go.” I hung up the phone, and Lily said “Mommy, what’s wrong?” I looked into the innocent eyes of my sweet 4-year-old little girl and said “The doctors might have a kidney and a pancreas for Daddy.” She smiled, gasped, and said “That will make Daddy so happy!” Knowing that Ryan was on a teleconference, I texted him and said “You need to call me.” His response was “I can’t. I am on this phone call.” With no other choice, I typed “Darlene just called. They might have a match for you.” Not being able to hear or see a reaction from him was not exactly how I imagined this happening. He wrote back “I guess you should pack a bag for me.” So, that’s exactly what I did. When bags were packed for all of us, I started making phone calls to see who was available to watch the kids. Each person I called answered on the first ring or text, and within minutes I had a plan in place. Ryan texted and said that his co-worker offered to watch our new puppy, Brooks. All that was left to do was wait. Easier said than done when you’re talking about the possibility of your husband’s life-saving transplant. So, I started cleaning toilets. Why? I don’t know, but it gave me something to do while Lily jumped up and down asking every two minutes when it was time to go to Miss Nicole’s house. At 12:40pm I was eating a bowl of [...]