Reece’s Story
A year-and-a-half after having a complete heart transplant, Reece Chambers, a lieutenant with East Jefferson Fire Rescue, heard the tones for a structure fire down the road from the Chimacum Fire Station.
Hopping up into the cab of his fire truck, he was both excited and extremely nervous. This was the first structure fire he would be fighting since his surgery.
“I was so nervous,” he said. “I looked down at my heart and I said, ‘Let’s go, Kevin.’”
Kevin was the name of the man whose heart now beats unfailingly inside Chambers’ chest.
“I feel like he’s with me,” Chambers said. “There are two guys in this body, and we’re doing life together now.”
Chambers, who is 42, is the first firefighter in Washington state to have a heart transplant and pass the physical exam required to return to full-time firefighting.
Having worked for East Jefferson Fire Rescue since 2004, he has now been back in the line of duty for a month after a turbulent two years of medical leave.
Early on in his career, he was hospitalized with heart problems, but was able to make a recovery and continue working. But due to constant exposure to chemicals and smoke on the job, his heart problems worsened over time.
Chambers was diagnosed with cardiomyopathy, a condition that caused his heart to have trouble pumping blood like it’s supposed to, which in turn caused the heart to enlarge and weaken.
“At some point your heart is so large it can’t even pump at all, it just kind of quivers,” he said.
His arms and legs would lose feeling when he slept, he had shortness of breath and would faint if he stood up too fast. And after particularly intense calls at work, he would have relapses that called for hospital visits.
“I felt like crap all the time,” he said. “It was a miserable existence.”
But Chambers didn’t want to give up his dream job.
“I faked it for all the guys back then,” he said. “I didn’t want to be the weak link. I’d come to work and I’d do my best and then I’d come home and fall apart.”
Eventually, he was put on light duty. But when he couldn’t even sit at a desk and do paperwork anymore, doctors said he needed to be hospitalized and needed a heart transplant.
At the UW Medical Center, doctors prepared Chambers to be on life support while his name was added to the transplant waitlist.
“They don’t give transplants to people who won’t be dead within the next six months,” Chambers said.
The transplant
According to the UW Medical Center website, since July of 2018 there were 38 people on the heart transplant waitlist. Since 2018, 84 people have received transplants.
Chambers was lucky: nearly 40 days after being put on the waitlist, he was getting prepped for surgery. Only 10% of people get a transplant after 30 days of waiting, according to the UW Medical Center. Seventy-three percent of people served at UW wait three years for a transplant.
As he was wheeled to the operation room, he high-fived his four kids who were there with him.
He and his family were excited, despite worrying about the intense surgery.
“I’m a fireman. I looked it up,” he said. “I saw what they were going to do and it’s brutal. But I was excited. I was so tired of being sick.”
Chambers went under as surgeons made an incision in his chest, separated his chest bone and opened his rib cage to begin the transplant. Removing his weakened heart, they sewed the donor heart into place, attaching the major blood vessels.
The heart, which began beating once the blood flow was restored, had belonged to a 42-year-old man named Kevin Irby. He had died just days before, according to his older sister Shana Irby. The cause of his death was unknown—he had stopped breathing mysteriously while taking a shower—but his body had been healthy enough for transplant.
Knowing her brother’s heart helped Chambers live didn’t soften the blow of losing her brother, Shana Irby said, but it was extremely meaningful.
“He had the kindest heart,” she said. “Genuinely all he wanted out of life was to help other people. This is what he would have wanted.”
Irby was a carpenter who built cabins, Shana said. He had two kids, who are now 7 and 3 years old. He was the youngest in the family, with three older sisters, and at the time of his death, lived with his parents in Yakima.
Chambers, who is now the same age Irby was when he died, said he feels a connection to his donor and has been in contact with the family.
“It’s a very complicated relationship,” he said. “We have this joy, but there is also this sorrow and tragedy. I lost my brother at a young age, so I feel like I can identify with the pain of losing someone before their time.”
Irby’s family was glad to know his donation was able to help not just Chambers, but other people in need of kidneys and other organs as well.
“We’re a family of faith, so we believe that when he was gone, he’s really not here anymore,” she said. “But knowing that my brother helped so many people, it doesn’t necessarily set us at ease, but it’s a blessing.”
Back to duty
With a new heart beating steadily in his chest, Chambers had his mind on one thing and one thing only: getting back to firefighting.
But recovering from a heart transplant is no small thing. And getting back in firefighting shape was an even larger battle.
“There’s in-shape and then there’s in firefighting shape,” said EJFR Chief Jim Walkowski.
Because Chambers’ heart condition was a direct result of exposure in his job, the Department of Labor and Industries paid for all his medical expenses. He also worked with L&I vocational rehab counselor John Janson to make goals to work toward.
“We had a Plan B and a Plan C for Reece to be able to still work with us, but in some other position,” Walkowski said. “But he only wanted Plan A.”
But before Chambers could start working on getting back into firefighting shape, he had to learn how to sit up and walk again.
“I don’t know if there are words to adequately capture the suffering you go through and the willpower it takes to recover from something like that,” he said.
Getting the strength to first sit up, then to walk, to run, to carry hoses, to climb stairs wearing weights and to eventually have a firefighter’s stamina took what felt like an excruciatingly long time.
In the meantime, Chambers also dealt with the emotional weight of having gone through such major health issues. He and his wife separated due to the stress. He had to go back to the hospital several times. He had nausea, headaches, and times when he thought he might quit. And the first time he took the physical examination to return to firefighting, he didn’t pass.
But despite the many setbacks, he kept working.
“I was so sick for so long,” he said. “I wanted my life back. I wanted to be the husband that my wife deserved. I wanted to be the dad my kids could be proud of. And I wanted to be the firefighter I had always dreamed of being.”
Finally, his work paid off. Now that he’s back on duty, Chief Walkowski said Chambers is better than ever at his job.
“It’s like Reece 2.0,” he said. “He’s back. Most of us have never seen him like this before.”
The heart that Chambers received combined with his determination to get back at work has him feeling better than ever—he says he’s more in shape than he was back when he was a 20-year-old.
Not only that, but even though he’s the same person, he feels the surgery transformed him.
“Obviously it changes you,” he said. “You examine yourself and your life when something that big happens. But I think it made me more of the guy I’ve always wanted to be.”
Article written by:
Lily Haight
LHAIGHT@PTLEADER.COM
HTTPS://PTLEADER.COM/STORIES/REECE-20-FIREFIGHTER-RETURNS-TO-DUTY-AFTER-HEART-TRANSPLANT,67588
Amanda’s Story
At 23 years old, I was a newlywed adjusting to life in the south after growing up in rural Pennsylvania. It was then that I was suddenly in need of a liver transplant due to a rare disease called PSC (Primary Scleorsing Cholangitis). Through a long series of events and tests, I eventually went the living donor route and was fortunate to match with my high school friend, Madalyn. Madalyn selflessly offered to donate to me after I had been sitting stagnant on the transplant waiting list for about 6 months. In August of 2015, we had our life-saving and life-altering surgeries. I am happy and thankful to say that we are both doing well today. I live a generally normal life with routine labs, daily medications to keep my new liver happy and healthy, and an immense appreciation for life.
Charlotte’s Story
Charlotte was diagnosed with a rare disease called Biliary Atresia ( about 1 in 15,000 babies are born with Biliary Atresia) on August 20, 2016, almost nine weeks after she was born. On August 23, 2016 she under went a 9 hour surgery called the Kasai procedure and was in the hospital for 10 days. During this procedure, surgeons carefully remove the damaged ducts outside the liver and used a small segment of the intestine to replace the ducts which allows bile to flow from the liver to the intestine. The Kasai was successful and she did well for over a year.
Then, in March 2018, Charlotte became sick again and was referred by her doctors to receive a liver transplant. On May 1, 2018 she was listed for transplant. The estimated wait time is 8 months to a year to wait for a liver.
Charlotte’s life was at risk waiting for the transplant. There are more people waiting than there are livers. This year alone, about 50 children will die waiting for a liver.
As time passed, Charlotte’s liver got worse. One day she was seemingly fine and the next she would spike a fever. On April 24, 2019 Charlotte had found herself back at the hospital.
Then, on April 30th 2019, a few days after Charlotte had been admitted back to the hospital her and her family got the best news of their lives, a match had been found!
When Janessa, Charlotte’s Mother, got the news, she did not know whether to get sick or cry – Janessa was ecstatic that it was finally their time.
Janessa said it’s hard to put into words the gratitude they feel to the donor family who saved Charlotte’s life.
“We’re deeply sorry for their loss,” Janessa said. “It breaks our heart that they lost their loved one. We are forever grateful for the amazing gift of life that the donor has given our daughter and family.”
Janessa is excited for Charlotte’s future. They can’t wait for her to get to be a normal toddler and for her bright future ahead.
“She’s alive today thanks to the transplant,” Janessa said. “She has a long life ahead of her now.”
Salma’s Story
My name’s Salma, I’m currently 18 and from originally from Egypt. When I was almost 5 years old, a traumatic accident happened leaving me needing a small intestine transplant. My family and I were on vacation, and we decided to go to the swimming pool we usually go to. They has installed a new toddler pool, that barely had 2 feet of water so it didn’t come very high up unless I was sitting down. I was playing in the pool, when I noticed a suction valve at the bottom of the swimming pool. Obviously I told the lifeguard, and all he said was “We got it sweetie, go back to playing” being a 4 year old, I went back to playing. Little did I know, that would have changed my life forever. I was just playing around, when I slipped and accidentally sat on the suction at the bottom of the pool. The lifeguard jumped in trying to pull me out, he couldn’t because the suction was too strong, until someone was finally able to pull me out, but I didn’t come out alone. After I was carried out, dangling from me was something, a red orange color. From the trauma, my mom thought it was my bathing suit until she got closer. She held me in her hands, as well as my intestines. My small intestines got sucked out from my rectum from how strong the suction was. We rushed to the nearest hospital where I was rushed to the OR. They had to cut out all of my small intestines, connect my large intestines, and close me up. They told my mom that I have 2 weeks to live, unless I receive a small bowl transplant. Which at the time(August of 2007) was not done anywhere except Pittsburgh, PA. We got in contact with the hospital, and since we aren’t citizens, they told us the surgery would cost $350k. We had nothing else to do… we weren’t rich, but we did our best. Went on talk shows, in Egypt, reached out to whoever we could possibly think of, as well as, write letters, and of course pray a miracle comes through. We waited and waited. One night, we were watching a show on TV that was live, and we got a phone call when we answered, we noticed it was the show we were watching letting us know our miracle has happened and someone was donating the money for my surgery. of course we were OVER THE MOON, but the next challenge was getting a visa to come to the United States which us a whole different story. Thankfully, we got our visa and came to the United States. I got evaluated for a small bowl transplant and was placed on the transplant waiting list. (TRANSPLANT IS NEVER A SCHEDULED PROCEDURE Because you have to be placed on the list for the right match) we waited a total of 18 months, then we got the call that my new organs are available. After an 8 hour surgery, I was moved up to the ICU for recovery. Sadly that didn’t go as planned. After 2 weeks from receiving the organ, my body rejected it. Of course there’s many medications that were given to treat the rejection, but it kept re-accuring. The transplanted organ lasted 6 months then it was removed due to severe rejection, PTLD which is CANCER, my bladder was ruptured in the process, AND my large intestines (my colon) was also bad from how bad the infection and rejection was. The decision was made to remove the organ if I were to survive. No one thought I’d make it though the removal, but it was out only chance. After removing the organs, they had to leave my abdomen open from how bad the infection was since 2009, I’ve been living with my abdomen open. It has healed some, but will never fully heal. Since I don’t have any intestines, there’s absolutely no way for me to eat anything by mouth(sometimes I’d chew the food for taste then spit it out. I can also drink anything, but it will come right out, which means it doesn’t absorb at all) so I am on TPN( Total Parenteral nutrition) which has kept me alive all these years, but at the same time, Causes sever liver damage. I receive my TPN through a central line port that goes to my heart. years after transplant, I’m currently needing a 5 organ multivisceral transplant( small intestines, large intestines, liver, pancreas, and a stomach) it’s been such a long road financial wise since I didn’t and didn’t qualify for medical insurance, but now it’s a reality due to being able to have insurance – thank God. Now I’m currently waiting on the transplant waiting list for the 5 organ multivisceral transplant. Again, a transplant is NEVER a scheduled procedure. I need all 5 organs from the same person at the SAME time, so it does have to be a deceased donor.. due to me having so many blood transfusions in the past, my body has a lot of antibodies which will make finding a match super difficult. The transplant process is so so hard, difficult, complicated, and if haven’t gone though it, wouldn’t understand. All I ask is you Please take the time to read this article that explains how the transplant process works.
HTTPS://MY.CLEVELANDCLINIC.ORG/…/PROG…/INTESTINE/PROCESS I love you all so much. I wouldn’t be here without all of you, and I truly couldn’t thank you all enough for the overwhelming love and support!
Ben’s Story
After graduating from Gonzaga University in May 2019, Ben became a registered nurse and decided to return home to Seattle as he started working at Swedish Hospital. By choosing the cardiac floor as the starting location for his career, he aimed to help a wide variety of people of all ages.
In under a year Ben has worked at Swedish, Ben says he has worked with over 50 people under the age of 30.
Cardiac problems can happen to anyone, at any age. As a recent college graduate, Ben says he has worked with people his own age and even younger. Although living a healthy lifestyle can sometimes help deter cardiac problems, that does not mean they will not happen. Many cardiac problems are caused by hereditary issues which are not changed by our lifestyle.
By starting his career on the cardiac floor, Ben is open to opportunities anywhere in his future because cardiac research and care is relevant everywhere in the world. Although there is already a tremendous amount of cardiac research currently happening, there could definitely be more. There needs to be more awareness for cardiac problems as it is the leading cause of death in the United States.
Ben recommends getting annual heart checkups which could help spot an underlying heart condition that would otherwise go unnoticed.
Justin’s Story
I desire to be an organ donor because I recognize the shortage there is in the medical field. Thousands of people are stuck on long waitlists for organ transplants because there are not enough organs for all the people that need them. If my organs can be used to save any one of the lives on those long lists, I am more than happy to do so, and I urge others to do so also.
If a majority of the country donates organs, there are thousands of lives that can be saved, and people can stop fearing that they will wait in line until their last breath.
Cameron’s Story
God’s plan for Cameron’s life has always been in his timing. While pregnant with Cameron, I went into labor three times before his due date. On November 16th, Cameron was born three weeks early. A week after bringing him home, he was hospitalized with critically high levels of bilirubin. After being in the hospital for a week, I could finally bring my baby boy home and watch him grow into an extraordinary young man.
Beginning at a young age, Cameron was spontaneous, full of energy, and looking for adventure. He was calculated in his decisions but challenged those around him with his high energy and lack of fear. Cameron had his guardian angels working overtime to keep him safe! His quest for adventure included a passion for fast toys; some of which included snowmobiles, motocross bikes, and racing remote control cars. As you can imagine, I was one of those mothers who worried that my son would get hurt every time he was out doing the things he loved.
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On the evening of June 28th, 2018 my worst fear became a reality when we received a life-changing phone call from a local sheriff. When I arrived at the hospital that night, everything quickly unfolded in front of me. It was like a bad dream. I just wanted someone to wake me up from this nightmare. I wanted everything to be just as it was before. I couldn’t wake up. It wasn’t a dream. My son was in a car accident and he was brain dead. This was not what I imagined God’s plan for Cameron’s life to be. I pictured him getting married, having children, and being a successful construction manager. Although I was experiencing unimaginable pain, a miracle was about to take place. Cameron was an organ donor. Even though we were losing our son, he would be giving life back to others.
As we sat in the hospital room with Cameron, the brightest rainbow we ever saw filled the sky; all without a sign of rain. At that exact moment, we knew what God’s plan for Cameron was. God blessed Cameron with so many wonderful characteristics, but the greatest of them was his heart. I believe that God kept Cameron alive after his accident so that his heart could be donated. God knew that a heart like his still had way too much love to give. Cameron’s heart was filled with kindness, compassion, and a love that made everyone around him feel appreciated. I can proudly say that Cameron’s heart now beats inside the chest of a 30-year-old man from Iowa, who I hope to meet someday. I know this man will continue blessing those around him because he had Cameron’s heart.
As days, weeks, and now months continue to pass, one miracle after another has taken place through Cameron’s donations. His life continues to bless others and our family has found peace knowing that he continues to live on; that God’s plan for Cameron is complete. By sharing Cameron’s story, I aim to spread hope and educate others on donor ship. In memory of Cameron, crosses will be sent to those in need of peace and comfort.
Mari’s Story
Because of a generous donor I am alive! My name is Mari, and on June 14th, 2016 I was blessed with the gift of life- I received a new heart from a donor and their family. In 2015, my role in life was being a mom to my beautiful boys Andrew & Matthew, wife to my husband Jim of 28 years, a daughter, a sister, Aunt and friend to many. I was an active woman, I liked to jog, hike with my dog Marley, boat and enjoying life to its fullest. I noticed I was feeling sluggish and I was not breathing very well. I attended many appointments with various doctors. Then, on June 13, 2015, I had my first EKG which detected my heart was in bad shape. Because of the condition my heart was in, they rushed me to the ER. For the next year it was specialist after specialist, test after test, many different biopsies and many kinds of medication to keep me alive, all while the tests and biopsies came back inconclusive. As each day passed my heart grew weaker and weaker. Little did I know or any doctors know, I had an extremely rare auto immune disease called Sarcoidosis, which was killing my heart. Without a gift of life from a donor, I would not make it much longer. On June 13, at 10:10pm I received the call that they had found a match for me. It is a bitter sweet story, another person passed and I have been given another chance at life to fulfill my dreams. Each day I give thanks for this blessing by thanking my donor for this opportunity to love, laugh and live. My family and I would like to say thank you to all of those who are donors today!
Heather’s Story
Although she has acted as a donor on a smaller scale, the donations, and her willingness to give still, is what sets Heather apart from the rest. As a donor, Heather has given blood, as well as added her name to the database of those signed up for Be The Match as a potential bone marrow donor. Heather’s first donation came on her college campus. As she was on her way home from class one day, she saw a sign in passing advertising a blood drive on campus, so she decided to stop in, and next thing you know, she was in the chair giving blood. Heather is a firm believer that donating blood is such an easy way to help so many people, so why would you not step up if you are able to. Although she has not yet been called by Be The Match, Heather knows that upon receiving that call, if she ever does, she would be eager to make her way to the hospital to help in saving someone’s life. Heathers responses to the interview regarding this piece were rather casual, and when asked why, she simply expressed that the people in need of her donation are going through battles far worse than she could ever imagine having to endure herself, thus making it an easy decision for her in the end to help restore, or improve, someone’s quality of life.
Chandni’s Story
Hi, I’m Chandni and I’m a 37 year old working mum of two. I was diagnosed with congenital heart disease at the age of 32.
It was a shock and I was devastated when I was diagnosed because since the age of 20 I have been very active and I thought that the diagnosis would mean that I could no longer workout. But luckily my doctors agreed that as long as I didn’t experience any symptoms of my heart disease (e.g. extreme breathlessness, chest pain etc.) I could continue exercising with caution. And so I did!
Over the next five years, I continued working out and also went on to have two beautiful children too, even though my heart disease was worsening over that time (I still had no symptoms).
Then, in June this year, I had a call from my Cardiologist who told me that needed to have my aortic valve replaced urgently because my existing valve was in a critical condition. We decided that I would have open heart surgery in September 2020.
Because I am autoimmune, and so there was a high risk of my new valve being rejected by my body, I was offered a human valve replacement (known as a homograft) – a valve transplant, so to speak.
I was extremely lucky and my surgeon managed to find me a suitable donor valve one week before my surgery was scheduled. It was a from a 52 year old woman who had sadly passed away in Liverpool.
The surgery went well and despite a few scares in the first 48 hours, I have been recovering well. My surgeon said my old valve was so damaged that he doesn’t know how I’m still alive and that the only explanation is that the exercise conditioned my heart to keep pumping regardless.
I am now 14 weeks post operation and back to my normal life juggling two young children, a full-time job and being a health and fitness coach on the side!
Life may be super busy and very chaotic but I wouldn’t have it any other way because I have learned that it is a precious gift that must be cherished. And so I will remain forever grateful to my valve donor and her family – without them, I may not be around today to make more memories with mine.
Dani’s Story
I had never been an organ donor due to an illogical fear of it. However, when my 19-year-old cousin needed an emergency heart transplant, I realized how imperative organ donation is. Due to the generosity of that one donor, my cousin is able to live- which is the best gift our family will ever receive. Needless to say, I have chosen to become an organ donor and would encourage everyone else to as well, the decision is well worth the lives you will save.
Lisa & Reid’s Story
February 2014 changed our lives forever. I was only 25 years old and my husband Reid and I had only been married a little over a year and a half. We were healthy and had never dealt with health struggles. However, that was soon to change.
After being admitted to the hospital for a routine gallbladder removal, my surgeon quickly noticed that something was wrong with my liver. After an MRI, it was revealed that I had a liver condition that only one in a million people develop, called Budd Chiari.
I was care-flown from Baylor Scott & White Medical Center – Plano to Baylor University Medical Center at Dallas and was quickly intubated and placed in a medically induced coma. A bone marrow biopsy revealed that my liver condition was caused from an undiagnosed blood disease. It was determined that my only chance for survival was going to be a complete liver transplant from a deceased donor. I was given 48 hours or less to live if I did not receive the gift of life.
I was put on the transplant list as status 1A and 10 hours later, a miracle came. A healthy liver had become available and it was a match for me.
My husband, Reid, decided to start journaling during that week so I would know every detail of every event that happened which led me to needing a liver transplant as I was in a coma.
During my recovery and rehab journey, Reid and I both felt the call from God that we needed to turn our story into a book. Our mission with our book, DELIVERED Lisa’s Story, is to glorify God and honor my donor, by sharing our transplant journey with others in order to raise awareness about the beauty of organ donation and the gift of life.
We knew that there were many other couples dealing with health struggles, and we wanted to share about the journey we had just traveled. We learned about suffering at a young age. We learned how to care for others going through trials, and most importantly we learned the difference organ donation can make.
“Only a couple of minutes after receiving the final call, Lisa’s transplant surgeons walked into the waiting room. They had this quiet, humble confidence about them. I had not formally met either of them before, but it took everything for me to not run up and wrap my arms around the two of them. They had just aided in giving my wife new life. The assistant surgeon explained to us that Lisa had done great, and the next twenty-four to forty-eight hours were crucial. As they were about to leave, I thanked them and shook both their hands. Hands that had just placed a new, life-giving organ into my wife—a precious gift that a family had willingly given in their deepest sorrow so that someone else could live.” –Chapter 5, DELIVERED Lisa’s Story
My donor was a 15 year old female who passed away in a car accident. I had the incredible opportunity to meet my donor’s parents and extended family and it is the most beautiful relationship. I always say, “The greatest hero I never knew, is my organ donor, Courtney Sterling who saved my life”
My husband being so touched by the gift of life that was given to us through Courtney decided to pass the gift on and became a living kidney donor in December 2018 to a fellow friend and teacher in need. It was a great experience and we are so thankful Reid was able to help improve his friends life through living kidney donation.
One of the greatest gifts that organ donation has granted me is the gift of becoming a Mama to two sweet little boys. We adopted our precious boys in October 2019 from Burundi, Africa. Frank is 7 years old and Blaise is 6 years old. They are the light of our lives. If it was not for my beautiful organ donor, Courtney Sterling saving my life…I would not have been able to grant a new life to Frank and Blaise. The ripple effect of organ donation is so beautiful.
We continue to have the most incredible relationship with my donor’s family. We call Courtney’s parents, our Godparents and now our sweet boys call them MawMaw and PawPaw. Seeing the way they love our boys and continue to welcome us with open arms into their lives is incredible. Our boys adore them and are blessed to have another set of grandparents. It is a relationship all of us never imagined but it is a silver lining to our stories.
I am still a dental hygienist and Reid is a still teacher. Organ donation has allowed us to continue to live our dream careers. I feel like our mission field is where our feet are planted. We have the unique opportunity to share our story with my patients, co-workers, and for Reid, his co-workers, students, and community.
Reid recently had a student email and tell him thank you for sharing his story of living kidney donation and adoption to the middle school students. She went on to say that it opened her mind to the thought of being an organ donor and possibly adopting her own children one day. Again, the ripple effect of donation is so beautiful. I always tell my donor parents that there is no way we will ever know on this side of heaven the amount of lives Courtney impacted and continues to impact by having chosen a selfless yes to being an organ donor.
I believe our stories can change lives. It is an honor to share ours. To help those who are going through a transplant or considering living kidney donation. To bring them comfort that we ourselves received through our journey. Our lives are meant to be lived for the Glory of God and we praise Him for the beauty of this extra time and life that has been granted to our family.
We hope to continue to inspire others to give life and to live life abundantly recognizing how special it is to wake up each day. To live a life that is selfless and loving your neighbors as you love yourself. That is what organ donation is all about.
Annette’s Story
In April of 2004, Annette Naylor got news most never do, she was diagnosed with Multiple Myeloma, in other words, bone marrow cancer. Because of the affects the multiple myeloma had on Annette and her body, she was forced to begin dialysis treatments which she underwent three days a week. Because of this new found normal for Annette, she was forced to leave her job at a local grocery store’s meat counter, resulting in the loss of a source of income for her family.
Eight months after her initial diagnosis, she was lucky enough to be announced in remission. Despite being in remission, however, Annette still required dialysis. Although she still required these treatments, Annette was stable enough to be a visitor to alternative dialysis units which allowed her to take a vacation to Hawaii with her family during this time. Additionally, because of her kidney stability, her doctor was able to cut down her dialysis from three to two times a week. Although it was only a one day difference, this made for a large difference in Annette’s day to day life.
After six years of dialysis, Annette’s nephrologists suggested she investigate the possibility of applying for a kidney transplant. After her application, Annette was accepted as a candidate. From there Annette began to look for a donor. She approached her three sisters, however, none of them were able to donate.
It was at this point in Annette’s transplant journey that her sister-in-law volunteered to be tested as a possible donor. The results came back, and Annette’s sister-in-law was an extremely close match. On November 22, 2011, they were admitted to OHSU where the transplant took place and was a major success.
Since the transplant, Annette and her kidney function have remained stable, and her life has changed in many ways. Annette is extremely grateful to everyone who assisted in her journey, especially to her sister-in-law for her tremendous donation.
Jeff’s Story
I don’t do bucket lists, FB likes, or retweet something that I find inspiring. I do big things; like donating a kidney. And big things sometime make me stop and question things. It took me more than a year to figure out why I wanted to donate a kidney.
What kind of world did I want to live in? I didn’t want to just repost something from FB. I wanted to do something. I wanted to live in a world in which this is how people treated each other. I wanted change, not just with myself, but on a scale that is frightening. Change that spoke not only to the core of who we are, but also why we are here.
Did I need to be special to donate? As it was looking like I was going to be approved one of the questions my social worker asked was, “Have you told your ex-wife(mom of my kids)?” I skirted the issue, “Do I have to?” “We recommend it,” she said. I sent a text that night to my ex with the expectation that she wouldn’t understand me, or what I was doing. We had had our problems, and I figured she’d point out how wrong this was. She replied with, “That is the most incredible decision I’ve ever heard of.” At that point I realized I didn’t have to be special to donate.
I am more powerful than I realize. We can solve a lot of problems on this planet, but we haven’t solved kidney disease. I can’t drop money into a cup and expect this to be cured. It still takes another human being to help.
By the way, my one kidney donation started a chain that allowed three recipients to get kidneys. Sometimes we really are bigger than we truly realize.
Sandra’s Story
This is Sandra, Venezuelan, 36 years old, on September 29 she completed 11 years of having her transplant. Her disease started when she was just 2 years old and was diagnosed with Glomerulonephritis, a kidney disease in which the part of the kidneys that helps filter waste and fluids from the blood is damaged. She was in several treatments, but after 20 years both her kidneys collapsed and she started dialysis, it was 3 years and 2 weeks, exactly 550 dialysis. After 3 months of being in dialysis, after a long and complex protocol of exams, she entered the waiting list at the Metropolitan Polyclinic in Caracas. The support of her family and friends was what helped her to cope in the best way with those complicated moments along with her Dr. José Benchimol, who was not only her doctor but her friend helping them reunite in dialysis every time she wanted to give up. They were very hard times, during which many times she wanted to give up, but on September 28, 2010 at 11:00 pm her phone rang, it was her doctor, telling her that Luciano was waiting for her (that’s what Sandra calls her kidney). At 11:00 am the next day she was in recovery and everything had been a success. After 5 days she was at her house. Sandra tells us that she does not complain about anything, that even the medications have treated her very “gently”, with the exception of the side effects of Prednisone. But once they let her exercise, everything returned to normal. At 11 years after the transplant, she has a completely normal life, she points out that “the success has been to take the pills religiously, to exercise and to feel like a completely normal person, as my mother says, I’m not sick, I just have a special condition.” Information on donation in Venezuela you can visit the @ontv_ve page WWW.ONTV-VENEZUELA.ORG and in the United States you can even register online as a donor through the Donate Life page HTTPS://WWW.DONATELIFE.NET/ – “- @slozadap”
Erik’s Story
Hi, my name is Erik Rodriguez, I am a heart transplant survivor.
On November 8, 2016 I started my day at work and felt chest pains and began to get anxiety attacks, which had never happened to me before. After a few hours of intense chest pain, I was told to go to the ER to get an idea as to what was causing the pain. Once I got to the ER the doctors told me my heart had enlarged to twice its size and was beating over 180 beats per minute and there was nothing they could do for me in Wenatchee, WA to save my life. Therefore, they immediately flew me out to University of Washington Medical Center. When I arrived I instantly got put into to the intensive care unit (ICU) and was on ECMO for twelve days. Once I woke up I had a total artificial heart (TAH) and every day was a new battle I had to overcome. I had a lot of good days where I would get up from bed and try to walk and bad days when I felt like giving up and dying, although with the support of my family, friends, and community they helped me to have hope and faith in myself to keep fighting. After three months of having a TAH I received great news from the doctors telling me they have found a perfect match, on January 27, 2017 I got my heart transplant. From that day forward it made me realize how blessed I was to have received a heart from someone who was an organ donor and who saved my life. This has inspired me to become an organ donor so that I also could save a life in need.
Hannah’s Story
Before December 2018 I was completely well, with no history of any major issues. But by the end of 2018, I thought I had developed a chest infection which soon led to symptoms of Norovirus. In the space of 4 weeks the GP had prescribed me three lots of antibiotics but nothing was helping. By mid-January, my breathing had got so shallow, I could barely walk without being out of breath and the vomiting had not relented. I went to A and E and after a few tests, I was asked if I had ever had a heart attack or ever seen a heart specialist. I was terrified. They rushed me to CCU and the next day they informed me that I was in heart failure and I would need to start taking beta blockers and an ace inhibitor drug but that after another month or so off work, I should be O.K. It was a shock, but I was alive and they were hopeful that with the medication I would be able to lead a relatively ‘normal’ life.
Sadly, this wasn’t to be. I crashed on the medication and went downhill almost instantly. Luckily the hospital were already in contact with a specialist heart and lung centre who advised them to put me on to an IV isotope drug and to transfer me to this specialist hospital. I had my first journey in an ambulance, blue lighted the whole way and was settled in to my new home.
I had every test possible to determine what had gone wrong. It came down to Dilated Cardiomyopathy – my heart was enlarged, scarred and barely pumping enough blood around my body. My consultants concluded that it must have happened because of a viral infection; even though there was no way to prove this as the biopsy showed that there was no sign of infection anymore, it was the only option left.
After having an ICD fitted and a week and half on tablet medication at home, it was decided that this was not the way forward. I got increasingly sicker really quickly when not in hospital and they pulled me back in to see what other methods could be used to ‘fix’ me.
I was officially placed on the urgent heart transplant list. This was it, the only answer to keep me alive; to let me live, someone else had to die. Of course, this was a lot to get our heads around. I had been completely well 4 months ago. And now I was dying. I had the best support from friends and family and they are what kept me going throughout this ordeal but I obviously would not still be here, writing this, living my life, without the person who was selfless enough to donate their organs when their time came.
Six weeks after being listed, I received the greatest gift I will ever receive in my entire life. My recovery has been slow and steady and 16 months later I’m feeling fantastic and enjoying the time I have.
I will be forever grateful for this second chance at life.
Brandon’s Story
Hello, I’m Brandon Mouw and insulin kept me alive for 31 years and now a pancreas-only transplant keeps me alive. I was diagnosed as a type 1 juvenile diabetic at the age of three. My diabetes was well controlled until I was 28 and had a kidney stone removal surgery.
Suddenly, I became a brittle hypoglycemic unaware diabetic. Brittle Diabetes means you cannot control diabetes no matter what you do and it’s life threatening. Something changed after I had surgery on my kidney. There was no direct explanation as to what exactly changed, but all we knew is that I went from having no issues to being in very dangerous territory in less than a year.
After technically dying twice and been given less than two years to live because of hypoglycemia, it was determined that I needed a pancreas-only transplant because no other treatments were working.
A pancreas-only transplant is an optional coverage in the Affordable Care Act, so my insurance, and any insurance I could try to get, did not cover the transplant. So, I had to fundraise $250,000 from family, friends, and strangers to cover the cost of the life saving transplant. Working against hypoglycemia that could take me out at any time and less than two years to live, I was able to raise the funds in three months. That blew my mind. Showed me that people are generous and care when they are aware of ways to be. Two months later, I got the call!
I’m an no longer insulin dependent. Instead, I’m dependent on a transplant organ and anti-rejection medication. Was a diabetic for 31 years and have been successfully managing the transplant for 2 years.
My experiences taught me that life is a gift. I am alive today because someone died and donated their organs. The gift of life changes a person and everyone in their lives. I am so thankful to my organ donor!! And, everyone who supported me along the way. I’m sharing my story to encourage and inspire everyone to never give up and raise awareness about organ donation. Follow my journey on brandonmouw.com or @brandonmouwofficial.
Erin’s Story
Hello, my name is Erin! I was born with congenital heart disease and Chronic Kidney Disease. I have had 4 open heart surgeries and 2 kidney transplants in my 31 years of life.
My first heart surgery was at just 4 days old and my first kidney transplant was in 2004, when I was 16 years old. That kidney was from a living donor, my mom! ?
In late 2016 my kidney ended up failing and in June of 2017 I started PD dialysis but after almost exactly a year of PD, I was forced to get a CVC catheter and start Hemo-dialysis. I began my very tough journey on hemo-dialysis for 1 1/2 years.
In November of 2019 I received my second kidney transplant through a paired chain donation with 8 people involved, which included my dad! ?
I am currently 8 months post transplant and am doing amazing!! I couldn’t be more grateful to have gone through what I have throughout my life because all these challenges have made me who I am today!
My passion is to bring awareness to organ donation. I would not be alive today if it wasn’t for these amazing people signing up to be an organ donor!
Bob’s Story
Trust Babe, I tell myself whenever anxiety surrounds me. And with the whole world on pause together in this moment and anxiety running rampant, I can’t help but feel like this is a repeat, one year later, of my breathless wait for a heart.
I partnered with Babe in June 2019.
We’ve never met in person. She is a complete mystery. But she has been my rock-solid foundation for the full year we have been partners.
I first heard about Babe’s heart in the wee hours of the morning after Father’s Day. I was handed a phone and a distant voice simply said the words that changed my world forever:
“I am calling to offer you a heart. It is a good heart. Do you want to accept it?”
I did. I christened her ‘Babe’ in the hours post-surgery while my mind was coming off some heavy sedation. And she has filled my life with new beginnings. New adventures. New possibilities.
You see, in the fall of 2017, I suffered a horrific heart arrhythmia event that kicked me into a cardiac intensive care unit for a week and changed the quality of my life drastically. My normal world came to a screeching halt. My body would no longer sustain the activities that I loved: hiking, biking, fishing, running, canoeing, and so much more. Let me just say the 18 months following the failed heart were not always grand.
But do not get me wrong — I have always felt extremely blessed by all I have done, by everything I have experienced, by the things I have gathered, and by the life I have lived. Wonderful friends, fabulous family, and dear loved ones surrounded me always. And without those supporting lifelines, I could not have gotten through the past few years.
But Babe is different. She brought me back to life. Literally.
Life in those 18 months before Babe is now a distant memory filled with magical moments and hard times. But with Babe came brighter colors, clearer thoughts, deeper breaths. True moments of life like I had not experienced in many years.
I have heard that a vessel must first be emptied before it can be refilled. In my case, that is one hundred percent correct. My world had to completely bottom out before I was ready to accept the unbelievable gift that is Babe. She proved to be an act of pure love by a perfect stranger.
In truth, I know nothing about Babe. Personal information about a donor is kept private and completely anonymous. Race, religion, politics, sexual orientation are all equal in the world of organ donations. The only thing I do know is that Babe was once someone’s baby, friend and family member. She is now an angel. I am now responsible for the care of someone else’s child that lives inside me. I will shepherd Babe forever and ever. We are partners for life.
Over the past twelve months, we have hiked up Tom’s Thumb in Scottsdale, participated in the 25-mile Velocity bike ride in NYC, canoed the Delaware River, hosted my kid’s 30th birthday celebration, walked the length of Coney Island, and joined a family reunion in Pennsylvania together. We have fished Shohola Falls, watched spring arrive in the Catskills, planted window boxes with my wife, and trod every block of the Upper West Side of Manhattan, Central Park, and Riverside, too.
In short, Babe has let me return to a full life of activities that we do as one.
She gave me this. But besides rebooting my life, she has taught me to live better, to be a better person. I will remain forever humbled and grateful for the care I received during this journey. Care from doctors, nurses, staff, orderlies, fellow patients, and those folks still waiting on the transplant list. I especially honor and cherish the angels who have donated organs to ease the suffering of those in need. Thank you.
We each have our individual adventures. Same as we each have our personal lives and loves and trials and heartbreaks. It is our singular life to live. But with a partner like Babe, I am more than myself. I am we.
Trust Babe, I think with each strong heartbeat. Especially in times of uncertainty. Whenever there is doubt.
-Bob Hoshour
Kinga’s Story
Hey there, my name is Kinga and I am 27. I have had kidney disease since I was 16 years old. I’ve had many surgeries in my life including my first kidney transplant at the age of 21.
My first medical procedure was a kidney biopsy around the time of my 16th birthday. I was then diagnosed with FGSG which stands for Focal segmental glomerulosclerosis. At the age of 20, I had my son which took a toll on my body. I had about 12-15% function left when I delivered him for 32 weeks. We spent one month in the NICU before coming home. Six weeks after I got home I started hemodialysis for the first time which was hard with a newborn. I was also breastfeeding at the time so sometimes he would join me at treatment. I did dialysis for just under a year before receiving a kidney.
In 2014 I had my first kidney transplant at the age of 21. That kidney was from a living donor, my mom! Not to mention we are not blood-related because I am adopted so what are the chances.
In 2018 after almost 5 years with my transplanted kidney, it started to fail. I had to start dialysis suddenly and I’ve been doing hemodialysis since. 3 days a week, 4 hours each run. It’s been tough this time around. One line change, serious line infection(sepsis), a lot of changes to my body etc. Not my favourite, but I know it’s my lifeline and without it, I would not be here.
So as I write this, I am sitting in my dialysis chair doing my run. Due to high antibodies and my blood type, It’s most likely I will receive a cadaver kidney. The wait time for a cadaver kidney is 5-7 years at the hospital that is going to do my transplant. I have been able to put my story out there on social media in hopes someone will come forward and we find a donor. In doing so I have had multiple potential living donors come forward!
As I await a second kidney transplant I have my ups and downs but my son is what keeps me going and fighting. I also want to share my story in hopes it can help someone else going through a similar situation. Being through so much at such a young age truly shapes you. It shows you life is so short and you need to live it how you want to!
All this has made me the person I am today.
My passion is to bring more awareness to organ donation. I would not be alive today if it wasn’t for all the people signing their donor cards and becoming an organ donor. As well as all the living donors who want try and help give you a second, third or even fourth chance at life.
So thank you because even if it’s helping one person, that’s now one life someone gets to live. So if you haven’t done so already please sign your donor card and make sure that your families understand your wishes. You never know if it will be you or someone that you love who could need the Gift of Life.