Testimonials of Hope

Read how organ donation has impacted, healed, inspired, and changed the lives of others.

Erik
Heart Transplant Recipient
Jeff
Live Kidney Donor
Charlotte
Liver Transplant Recipient
Mari
Heart Transplant Recipient
Dani
A New Donor
Cameron
Organ Donor
Reece
Heart Transplant Recipient
Tito
Knee Donation Recipient
Annette
Kidney Transplant Recipient
Adrianna
A New Donor
Erin
Kidney Transplant Recipient
Bob
Heart Transplant Recipient
Aimee
Live Kidney Donor
Evan
Heart Transplant Recipient
Ben
Cardiac Nurse
Patti
Cornea Transplant Recipient
Justin
A New Donor
Pamela
Live Kidney and Liver Donor
Heather
Registered Donor
Sarah
Liver Transplant Recipient
Michelle
Liver Transplant Recipient
Louise
Liver Transplant Recipient
Amanda
Liver Transplant Recipient
Hannah
Heart Transplant Recipient
Brandon
Pancreas Transplant Recipient
Jackie
Double Lung Transplant Recipient
Salma
Waiting For - Multivisceral Transplant
Parker
Heart Transplant Recipient
Kinga
Kidney Transplant Recipient
Aisha
Heart Transplant Recipient
Olivia
Kidney Transplant Recipient
David
Kidney Transplant Recipient
Kylie
Registered Organ Donor
Daphne
Heart Donor
Joey
Heart Transplant Recipient
John
Heart Failure & Transplant Recipient
Chandni
Aortic Valve Transplant Recipient
Laurence
Heart Transplant Recipient
Charlie
Heart Transplant Recipient
Gail
Heart Transplant Recipient
Anna
Kidney Transplant Recipient

Have a Testimonial of Hope you would like to share? We would love to hear from you! Email admin@alexandershope.org with your testimonial!

Erik

Heart Transplant Recipient

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.

 

 

Jeff

Live Kidney Donor

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.

 

 

Charlotte

Liver Transplant Recipient

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.”

 

 

Mari

Heart Transplant Recipient

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!

 

 

 

Dani

A New Donor

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.

 

 

Cameron

Organ Donor

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.

 

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.

 

 

 

Reece

Heart Transplant Recipient

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 

 

 

 

 

Tito

Knee Donation Recipient

Tito first began having knee discomfort as a kid, which was not ideal for his active lifestyle which included sports such as his favorite, volleyball. He was later diagnosed with osteochondritis dissecans (OCD) which is a condition where one’s bones don’t grow as fast as the rest of the body. Growing so fast and playing a variety of sports did not help with the problem. In high school, doctors suggested to stop running and jumping as it was not helping the problem at hand. After a couple of surgeries, Tito made the switch from volleyball to rowing, although knee issues persisted.

Tito began his freshman year at Gonzaga in 2015 as a member of the Cheer Team, although was forced to resign after continuous knee discomfort. During the second half of his freshman year, Tito was put on a waiting list for a cadaver knee replacement. The waiting list process was something special as a matching knee needed to be from someone with 50% of the same antibodies. During this time, Tito was unable to travel because the surgery must take place within five days of a match being found. After waiting about 6 months, he finally received a call from a doctor with news of a match. Tito says, “waiting for the phone call was a bitter sweet thing – when you are waiting for the call it’s a paradox because although you know the knee will help better your own life, you know someone else is losing their life.”

Two days after the phone call, Tito underwent Osteochondral Allograft Transplantation (OCA) surgery which is when they take a piece of the cadaver knee and place it in the recipients. The surgery is extremely invasive due to the necessary reconstruction process of the knee including ligaments and tendons which left a large scar running down the side of Tito’s knee. Due to the necessary 6-week healing process the surgery was almost unable to happen before returning to school. Tito remembers the doctor saying they could only wait about two more weeks to find a matching donor and the call came during the second week.

After the surgery, Tito was able to write a letter to the family of the donor expressing his appreciation. Due to the anonymous design of the donation process, he does not know the family by name as the letter was sent through the donor matching system. He is thankful for this opportunity and believes it allowed him to develop closure. Although he did not return to the cheer team, Tito continues to live an active lifestyle after surgery. Throughout the rest of his college career he competed in numerous intramural sports as well has joining the club volleyball team. His knee donation allows him to continue living an active lifestyle to this day.

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Annette

Kidney Transplant Recipient

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.

 

 

Adrianna

A New Donor

We don’t like to talk about sickness. It’s something we don’t really think about until it directly effects us or someone we love. And for that reason we often take our health for granted. My mom’s cancer diagnosis was the wake up call I wish I didn’t need, but it brought to light the gift that was my health.

When I turned 16, I registered to become an organ donor, as an act of gratitude towards my health and empathy towards those who are less fortunate than I am.

It shouldn’t take the fear of losing someone you love to become a donor. Being an organ donor is more than just to do with your body, it’s a way of honoring those who fight a battle that you don’t have to. Knowing that I could have the ability to save someone’s life—and its reminder of the value that my life holds—has given me so much pride. I encourage all those around me to make the most of that opportunity too.

 

 

Erin

Kidney Transplant Recipient

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

Heart Transplant Recipient

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

Read Bob’s full article here.

 

 

 

Aimee

Live Kidney Donor

At the end of 2018, I made the decision to donate a kidney to my mother and our date was set for the 21 May 2019. The reason behind my decision was that her hearts function started dropping as a result of fluid build up on her lungs, because of Peritoneal dialysis. This meant the lower her function the more likely she would be taken off the waiting list.

I always considered myself as an option but at the time of her diagnosis (2015) I had just started with my studies, and my parents wanted me to see it through. Between her initial diagnosis and the day she received confirmation on a date, many donors came forward of which none were successful. All until the Lord planned it in such a way, that my mother was to receive a kidney from her daughter who she birthday 25 years ago. His hand was in it all from the time of her initial diagnosis, and He is still with her today. What joy I feel knowing that a year later, my mother is by my side living her best life, dialysis free

Going through this process in my country (South Africa) I felt very alone, as much attention was focused on my mother as the kidney recipient. During my time of being worked up as a donor, I so much wished that I had someone to talk to, someone who could share their experience with me and clear up the questions I had about pre and post donation. Someone who could tell me…what is life like living with only one kidney? In the days after the operation I reflected back on the mental and emotional state I had found myself in: lonely, anxious, afraid, numb. I suddenly felt a deep desire to share my experience, to let someone else know what is life like with one kidney. I wanted to use my story as a living kidney donor to bring about awareness, support and hope for those going through or wanting to go through with kidney donation. It was with that deep desire that I created a platform on Instagram (@youngkidneydonors) to share my story, so that others may be educated, feel supported and share with me their own experiences. So that bit by bit each one of us can bring about hope by reaching someone out there who May feel moved to share their spare. Because there is nothing in this life, that is more rewarding and fulfilling than knowing you have significantly improved the quality and longevity of someone else’s life.

 

 

Evan

Heart Transplant Recipient

Hi, my name is Evan Kentile and I am a heart transplant survivor. 

I was born with a congenital heart defect which made my heart take up 75 percent of my chest cavity. After they finally found a heart I had the transplant. My survival rate was low and first taken minute by minute, then hour by hour, day by day and so on. 

Things haven’t always been easy, but now being 24 you get used to it. My outlet since I can’t play any sports, and I’m not interested in that anyway, has always been music. I love music, it’s my life. I’m a singer, song writer and drummer. Music has always helped me get through all my surgeries and procedures I need to do. I love writing songs for my brother and I’s band, The Survivors.

Music is everything to me and makes me really happy. Also, having a heart transplant has allowed me to do many cool things. I was able to go onstage with one of my favorite bands Breaking Benjamin and I also have met another one of my all time favorite bands, Green Day. None of that would have happened if it wasn’t for what I’ve been through. So yes, a lot of the medical stuff I have been through and still go through isn’t fun, but sometimes it is worth it, because I get to do many cool things that some people sadly won’t be able to do.  

 

 

Ben

Cardiac Nurse

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.

 

 

Patti

Cornea Transplant Recipient

As a pharmacist, mother of three, wife, and so, so much more, Patti knew that when she noticed her vision starting to deteriorate, that she needed to do something about it.

She found herself going into her optometrist quite often, as often as every six months, for a new prescription. From there, she assumed that lasik might be the best fix, so she tracked down the same optometrist that did her brother’s lasik. From there, she soon discovered that lasik would not be an option and that something was seriously wrong with her eyes.

After going in for a consultation with a cornea specialist, Patti was diagnosed with Fuch’s Dystrophy, a hereditary condition that causes one’s vision to deteriorate and typically doesn’t result in the need for a transplant until someone reaches their 60’s or 70’s. When someone has Fuch’s Dystrophy, their corneas begin to thicken causing vision impairment and eventual blindness. When Patti had received her diagnosis, she was almost completely blind in her left eye.

At the age of 45, Patti underwent a corneal transplant in her left eye. 9 years later she underwent a transplant in her right eye. Initially after the transplant, Patti took four eye drops regularly to help ensure her eyes remained in good condition.

She is forever grateful to the two people who decided to sign up as organ and tissue donors, without them, she would not still have her sight. 

 

 

Justin

A New Donor

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.

 

 

 

Pamela

Live Kidney and Liver Donor

In March of 2018, I tipped the scales at 297 pounds. At only 5’2, this made me obese, to say the least. Overweight my entire life, I struggled to maintain a healthy relationship with food.

On March 27, as I reflected on a photo my daughter took of me, I thought about my future. I thought about where my poor health would lead, and I knew it was no where good. So I made a decision. I was determined to start watching what I ate, workout, and get my life on track for the first time ever.

Fast forward to August. I had lost around 70 pounds at that point and was feeling better than I ever had. As I scrolled Facebook I came upon a post from a former HS classmate with a link to the transplant institute saying she was in Stage 4 Kidney failure and needed a living donor. This was something that always appealed to me, but being overweight, wasn’t something I thought I would be able to do. So I reached out and said I’d like to try.

Within a week, I had been tested and then got amazing news…I was a match!  But sadly the transplant institute said I was still too overweight. My potential recipient had been told she would have to start dialysis around the beginning of the year, and she adamantly did not want to. This was my “why”. This was my drive to step up my weight loss. So I did just that.

By December 2018 I had lost a total of 150 pounds, and I donated to her two days after Christmas. Many say I saved her life, but really, she saved mine too!

The experience was so personally rewarding I thought, why not do it again?  So in November 2019 I started the process of being tested to donate part of my liver. I received word that I got approved within a few months!

On June 4, 2020 I donated 70% of my liver altruistically. I may never meet my liver recipient, but to know I was able to give yet another person a second chance at life is a feeling like no other!

 

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Heather

Registered Donor

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.

 

 

Sarah

Liver Transplant Recipient

When I was 3 months old I was diagnosed with Biliary Artesia, a disease that affects the liver and makes the body unable to remove the toxins out of the liver . So fast forward to when I was 14 up until then I was doing fine with not many major problems except for a few setbacks here and there . 14 is the age where I had to leave school I started getting fatigued all the time and couldn’t function as well anymore, my energy was gone . I was put on the transplant list in one state and then I moved to where I am now which is where I received my life saving gift at 18 years old . I am 22 now and this has been the best year of my life I’ve gone to college, gotten my GED, and so many other things. I’m so blessed everyday and thankful for my second chance.

 

 

Michelle

Liver Transplant Recipient

In April 2018, organ donation saved my life. For years I had unknowingly suffered with an undiagnosed liver disease that was slowly putting me into liver failure. By the time I was diagnosed, my health had dramatically deteriorated to the point of needing a transplant. I was blessed to receive a liver from another young woman who had lost her life earlier that day. I’m forever grateful for her parents who said “yes” to save the lives of many.

 

 

Louise

Liver Transplant Recipient

I developed acute fatty liver of pregnancy at 37 weeks. It is a genetic disorder and that if not caught can cause mass organ failure. Unfortunately my illness was negligently not caught in time and I lost my beautiful son and daughter Mia and Leo. I was in intensive care and the team at the next hospital were able to find me a donor liver in 8 hours! It is a long road to recovery both psychologically and physically but we are starting to live life to the fullest and I will always remember my donor.

 

 

Amanda

Liver Transplant Recipient

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.

 

 

Hannah

Heart Transplant Recipient

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

Pancreas Transplant Recipient

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. 

 

 

 

 

 

Jackie

Double Lung Transplant Recipient

I spent 18 months using oxygen 24/7 to keep me alive prior to the gift of my lung babies in November 2020. Without a double lung transplant I doubt I would have even made it to my 30th birthday this year. And now I’m living freely and thriving, oxygen free thanks to my donor angel and their family. My family and I will be forever grateful for the gift of life given to me. Words can’t even begin to express our gratitude. Don’t forget to sign on to save lives and become a registered organ donor!

 

 

 

 

 

Salma

Waiting For - Multivisceral Transplant

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!

 

 

 

 

Parker

Heart Transplant Recipient

Parker was diagnosed with heart failure just a few days short of his 12th birthday while at a visit at the NIH in 2019. The NIH doctors were helping his neurologist, in San Diego, correct his muscle disease diagnosis. The news of Parker’s heart failure was both shocking and devastating to his family. Over the next several months they tried to live as normally as they could with their new diagnosis. Two months after his trip to the NIH, Parker began to have dangerous abnormal heart rhythms and spent a couple of weeks in the hospital trying to get them regulated with medicine. Upon discharge, they were not only prescribed new medications, but Parker was also prescribed and AED. He had to take one wherever he went. Over the next several months they experiences highs and lows as Parker’s heart began a gradual decline. Regular tasks became a chore or even impossible. Parker knew that his heart was slowing down, but nobody was prepared for what happened this past summer. Parker’s heart gave up. Medicine was failing him. Parker spent 15 days in the hospital in August getting a cardiac tune up, of sorts. When he was finally allowed to go home, he found himself back at the hospital only two weeks later with irregular rhythms. His team called him in to make some adjustments to his implanted heart monitor and correct his arrhythmia. Parker was prepared for an afternoon to, maybe, an over night visit. Once he was at the hospital it was clear that he wouldn’t be coming home anytime soon. Two weeks after he was admitted, Parker received a VAD placement to help pump his left ventricle. After several weeks of recovery and rehab Parker and his parents were preparing to go home to spend the holidays at home, knowing they would be back to be listed for transplant. Five weeks after VAD surgery it was clear that Parker’s heart, even assisted, did not have much fight left. He consented to go into a trial fibrillation and Parker finally conceded to staying at the hospital while he waited for a new heart and so he was listed for transplant. Parker received his new heart on Halloween, his favorite holiday. Three weeks later Parker went home! He is not home with his parents, brother and three dogs and is feeling great. For the first time in a very long time Parker is doing the things that a 13 year old boy should be doing. All because someone chose to be an organ donor.

 

 

 

Kinga

Kidney Transplant Recipient

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.

 

 

 

 

Aisha

Heart Transplant Recipient

Hi! I’m Aisha. I am an opera singer, Star Wars trivia Champion, Calgary Flames fan, and heart transplant recipient. This is my story…

In January of 2009, tragedy struck our family I was rushed into hospital with terrible chest pain. After a series of nerve-racking tests and imaging, I was diagnosed with Takayasu Arteritis; a rare, systemic, inflammatory large-vessel vasculitis. The disease had attacked my aorta in my heart. After remaining in the intensive care unit in the Calgary Children’s Hospital for months, I had my first open heart surgery on April 13th2009. At the fragile age of 16, the surgeons replaced my aortic valve with an artificial one. Ultimately the surgery was a success.

For the next seven years, my family and I returned to normal life and we handled the highs and lows of my condition. But on August 17th,2016, we were once again struck by an emergency. During a routine imaging procedure of my heart, the doctors found that my previous surgery had fallen apart and my disease had returned with a vengeance. Once again, I was rushed into hospital for a series of testing and imaging. Less than 48 hours later, I underwent a 12-hour open heart surgery on August 19th.We witnessed a miracle that day and the surgery was a success however, recovery was difficult. Through the replacement of my aorta and extending arteries the surgeons unfortunately paralyzed half of my vocal chords. Now for most people this wouldn’t be a problem but I am a mezzo-soprano for Calgary Opera Chorus. Yeah, a singer with a busted cord. Who would have thought. Though I grieved the loss of my vocal cord I managed to have  a year and a half of more or less better health.

In January 2018 standing in my kitchen a rogue blood clot had broken from my old conduit stitches and I was fighting for my life once again. This time was the most dire, after a stent was placed and four angiograms were done I knew everything was different. My heart was in full failure and an L-Vad wire was not an option. I was dying and ECMO was looking more and more like a possibility. Transplant was our only hope. I received the call on March 20, 2018 and had my transplant surgery on the 21st. The transplant was a great success and the recovery was smooth.

And so here we are, it’s been 3 years since my transplant. this is the story that I want to share. A story of family, love, and resilience. Lots of tears and laughter – and many more years to come.

Olivia

Kidney Transplant Recipient

My name is Olivia McCoy I am 24 years old and I had kidney failure at age 15.

I had always been a very active kid growing up, I had no major medical issues and I was an elite runner on a track team, which is why it came as a shock to me once I moved to Minnesota in 2011 and my health started to decline. I ran on the high school track team and noticed that I was feeling more tired than usual, I started to notice that I was feeling nauseous and had a loss appetite. I remember one day as I was leaving the house, I cut my finger and there was a lot of blood from this tiny cut this was a sign of how anemic I was, later that day I went to the mall with friends and after eating at the food court I got sick and threw up. After other incidents of throwing up after eating, my mom took me into the doctor, after a few tests the hospital called my parents and told them to take me to the hospital and they would have a doctor waiting for me.

When we got to the hospital, I had three different doctors check on me and my numbers and they found that creatinine level was 22 a normal kidney function at 1.2.

I was put on dialysis and due to how often I was in treatment I was in and out of school my freshman year of high school. After a few months of dialysis I was put on a transplant list, two weeks later I was receiving my kidney.

After my transplant I had a few rounds of rejection, but I was able to pull through and keep my kidney. I was running cross country and track a year after my transplant and was able to finish out high school. I still have a few bumps in the road dealing with renal failure, but I am so thankful that I was able to receive a kidney and continue to live out my life.

Organ donation is very important to me not only because I have gone through the process of receiving an organ but because you have the chance to change someone’s life, just as someone changed mine and for that I am forever grateful.

 

 

 

 

David

Kidney Transplant Recipient

Hello, My name is David Pinilla. I am 24 years old and 3 months post kidney transplant. I’m feeling so alive and well it’s crazy the difference a transplant can do to someone. The reason for my transplant is when I was born the doctor noticed something not right with my urine as in I urinated blood and protein which meant my kidney was not filtering correctly. Later down in my life, around 10 years old my doctor decided to do a kidney biopsy to see what is truly happening. Turns out I had a genetic disorder called Alport Syndrome. Meaning the filtering in my kidneys was not working due to a blockage. Because of this, my kidney would start to fail, but doctor’s could not tell me when that would happen.

By the time I was 22 in July/August my doctor informed me that my kidney function was dropping drastically. Because of this, I needed to do PD Dialysis which I did for about 1 year until, thanks to Christ, I received a kidney that was a 100% match and had a living donor that was capable, as well, but for me I had a donor who unfortunately passed away but was able to donate the kidney to sustain my life which I can’t thanks enough. I have a 1 year old daughter who I love so much and do so much for and while in dialysis I felt like such a failure of a father but now I’m able to do much more and will contain to cherish every day with her and my family. Thanks to my new kidney.

 

 

 

 

Kylie

Registered Organ Donor

When I got my permit at 15, I made the decision to be an organ donor. I wanted to be one because it offers another person a chance at a future if my life just happens to be cut short. I think being an organ donor is extremely important because if you just so happen to be in the circumstance where you no longer require them, you could save someone else. People wait for years to receive healthy organs if theirs fail. Imagine being a child and told you have to have one of your organs replaced due to cancer or some other unfortunate circumstance. You haven’t even had the chance to live yet and your life could be cut short, but with the help of a donor, you could see what life has to offer.

 

 

 

 

 

Daphne

Heart Donor

Daphne Williams was nothing short of incredible. My mom was a strong woman. She taught me so much in her 45 years of life. She showed me how to endlessly pursue my dreams, no matter what that may look like to anyone else. Most of all, she taught me how to make the most of every single moment this life has to offer.

One of my favorite things about my mom was her ability to create remarkable experiences that I will cherish for a lifetime. She cultivated my adventurous spirit as it wasn’t uncommon for us to spend the weekend hiking a mountain or embarking on a 25 mile bike ride. She loved capturing these priceless moments by obsessing over the hundreds of pictures she would take during these outings.

This year will make it the fifth year without her. Losing her was by far the hardest pain I’ve had to endure. There’s not a day goes by without me wishing she was still here- for the big moments and the small. While I am thankful to have all of the pictures she took to remember her, I’m worried that her memory is fading.

Then I realize her legacy lives on in so many ways. My mom will forever be my hero, but how amazing is it that she is a hero to another family. Her heart currently resides in Ms. Doris who lived with a heart disease for 10 years. My mom, a Zumba instructor and health nut, had an impeccable heart. Ms. Doris said that she is forever grateful to my mom and is so happy for the special care my mom took of the heart that now resides within Ms. Doris.

I had the honor of meeting Ms. Doris and listening to my mom’s heart. The sound of her heart in Ms. Doris’ chest was the most beautiful sound I have ever heard. Ms. Doris having my mom’s heart brings me comfort. My mom lives on. Her legacy lives on. She is a hero.

My mom chose to be an organ donor, and that decision was powerful enough to save someone’s life.

Melissa Colorigh

 

 

 

 

Joey

Heart Transplant Recipient

We found at our 20 week ultrasound while pregnant with our little boy that his heart had not developed correctly. He would be born with several critical heart defects- Single Ventricle, Double Outlet Right Ventricle, Mitral Atresia, Coarctation of the Aorta. We decided we wanted to give him every chance we could and so he went to the Children’s hospital here in Utah as soon as he was born, and underwent his first open heart surgery, the Norwood BT Shunt procedure, at 6 days old.

Our plan consisted of 3 stages of reconstruction- the Norwood surgery, the Glenn surgery, and the Fontan surgery. His first surgery was a success, but we had a very rocky road afterwards. Complications arrived one after the other, it’s true when they say, “one step forward.. two steps back.” When Joey was 3 months old we were able to take him home, only to have to return 3 days later due to a virus and an Atrial flutter arrhythmia. The doctors decided that we most likely wouldn’t go home again until he was ready for his Glenn Surgery. So, that was our goal- our light at the end of the tunnel.

So many families that we had connected with that had undergone the same surgeries and had similar heart defects had told us that life becomes much more stable and easier after the Glenn, so it’s what we were hoping and eagerly waiting for– hoping that it would help our little boy to come home. At 4 months old, Joey went into his ‘Pre-Glenn’ heart catheter procedure, but we didn’t receive the news we were hoping for- Joey was not a good candidate for the surgery. It ended up being that his pulmonary pressures were fat too high to move forward. We felt absolutely crushed.

The following day our surgeon presented us with the idea of transplant, and connected us with the Heart Transplant Team. The second we met with the team, we knew that transplant would be the path Joey would take. Joey was placed on the UNOs transplant list and the beginning of August 2019. He was only on the list for 3 weeks by the time an organ became available. Joey received his new heart on September 6, 2019. It was the most bittersweet blessing we could have ever received! We’ve never been more grateful and loved a stranger so much as we did in that moment and every day since. Joey was able to come home the day he turned 6 months old. We’ve had a few ups and downs since transplant, but overall Joey is thriving and living a normal 2 year old life! He is mischievous, smart, playful, silly, and so so loving! We are now 1 1/2 years post transplant, Joey will be turning 2 years old in a few days, and we couldn’t be more grateful for the journey that led us here.. all because of a donor.

 

 

 

 

John

Heart Failure & Transplant Recipient

May 2016: I went in for a simple procedure and came out with what we thought was a reaction from anesthesia. In reality, it was DCM & heart failure becoming fully symptomatic in a short period of time. I spent the following 3 days in & out of the ER to treat symptoms as they came up. During my 2nd ER trip, the nurse practitioner (who happened to be a friend) saw my heart didn’t look right on a x-ray and suggested I see a cardiologist. I ended up in the ER for a 3rd time and was admitted to the hospital. After 2 weeks, I was stable enough to leave but still without a diagnosis. I was readmitted after a few days, this time to the Houston Med Center. They ended up doing a heart cath before I got into a room to check out my heart. That’s where we got my official diagnosis. I was still in recovery being told at 32 years old that I had DCM & end-stage heart failure. Before talk of medications or treatment, they talked about LVAD or a transplant as the best treatment for me.

Over the next 3 years, I saw 3 different cardiology teams. I tried different meds and routines. None improved my heart function or quality of life. In August 2019, I was given 6-12 months to live without any interventions. Sept 4, 2019, I went in for a right heart cath and came out being told I wasn’t going home. My heart was too weak to keep me alive. I was very resistant to the idea of a LVAD but agreed to start the testing. I got my LVAD 20 days later. Over the following 18 months, I lost 140 lbs so I could reach the BMI goal for transplant and got my transplant March 3, 2021.

 

 

 

Chandni

Aortic Valve Transplant Recipient

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. 

 

 

 

 

Laurence

Heart Transplant Recipient

My name is Laurence, I’m French and I was born with Hypertrophic Cardiomyopathy. This is a congenital heart disease passed on by my father, who died of sudden cardiac arrest at the age of 44, when I was 8 years old. I found out when I was 25 that I had the same condition, but I still led rather normal life : – I was told I couldn’t have children, because being pregnant is such a strain on the heart. But thanks to an incredible cardiologist, I did have 2 kids. – I was told not to practice any violent sports, but I started skiing at the age of 3 and water skiing at the age of 35.

 

My physical abilities were less than those of most people my age, but my life was rather normal. – But five years ago, everything brutally changed. I went into atrial fibrillation : this means that the heart atrium is no longer beating regularly and my resting heart rate went up to 150 bpm. Something as simple as brushing my teeth became an ordeal. In order to get my heartbeat back to normal, I went through numerous electric shocks, but these ended up not being enough and I had to get an operation disconnecting my atrium from the rest of my heart, a pacemaker and a defibrillator. I thought this procedure would be a miracle cure and that my life would get back to normal, but it didn’t. Things got worse and I ended up in stage 3 heart failure, unable to walk more than a block without stopping to catch my breath. In October 2019, I told my cardiologist my life wasn’t worth living anymore and that I was only staying alive for my children.

 

He told me the only solution would be to get a heart transplant and 2 months later, in November 2019, I was officially on the French heart transplant list, listed number 44. I stayed on the list for only three weeks. The day before Christmas eve, I got a call from the hospital : a heart was waiting for me. Things were hard after the transplant. I spent two months in the ICU on dialysis 24/7, because my kidneys weren’t functioning. A kidney transplant was even considered by my doctors. But as months passed, things got better. I am now just a year past my transplant. I can walk kilometers without stopping, I live on the fourth floor of my building and make a point of never taking the elevator, just to experience the happiness of making it up 4 flights of stairs without being out of breath. My children keep on telling me how incredible it is to have a mother that they can experience the simple things of life with again and my next goal is to get back on my skis as soon as I can !

 

This was all made possible thanks to an organ donor and his family, who, in one of the most tragic moments of their lives, had the generosity to think that the passing of the person they loved would not be in vain if he saved someone else’s life thanks to organ donation.

 

 

 

 

 

Charlie

Heart Transplant Recipient

My name is Taylor Sang, and my dad, Charlie, received a second chance at life on January 3, 2021. In 2019, my dad was diagnosed with end-stage heart failure. Because of his many comorbidities at the time, he was not eligible for transplantation; dad received an LVAD (Left Ventricle Assist Device) after 11 days in the hospital. An LVAD is a mechanical external heart; a pump was put onto his heart and connected to two batteries by a drive line that went directly into his chest. With an LVAD, a patient doesn’t have blood pressure nor a pulse; the blood is continuously moved through the body. After receiving the LVAD, dad spent 51 days in the hospital, most of which were spent in the ICU (he had to have another emergency surgery a few days after he received the LVAD because fluid was filling the lining around his LVAD and compressing his heart). Dad’s brother traveled from California to a hospital in the Midwest to take care of my dad for each of those 51 days; my entire family owes an incredible thanks to my Uncle Henry; he saved my dad’s life and was the lifeline to the rest of the family in Kentucky while dad recovered.

Dad lived in the LVAD for 18 months. Because prospects of receiving a heart transplant at the hospital that provided the LVAD were so slim that dad would most likely die before receiving the call, dad got a second opinion at Vanderbilt Hospital in Nashville, TN. Leading up to this, I got engaged to the love of my life, but everything was so bittersweet because I didn’t want to plan a wedding that my dad wouldn’t be alive to see. Luckily, Vanderbilt was much more responsive than the first hospital; my family was put on high alert for a 30-day window a few days before Thanksgiving 2020; our hopes were so high for the holidays.

A few weeks before Christmas, dad got the call and rushed from Louisville, KY to Nashville. Upon dad’s arriving to the OR, the heart’s vitals and valves began being checked, and the doctors found that the organ was no longer viable. Though disappointed, we still had hope.

Two days later, dad received the call again. Dad rushed to Nashville with so much hope and anticipation to have a second chance. Upon arriving to the OR and being prepped for surgery, dad was administered a COVID-19 test, and he tested positive. Transplantation cannot occur when someone has an active infection, so dad had to come home, and we thought that our 30-day window was gone. Luckily, dad was completely asymptomatic, and Vanderbilt Hospital (due to the circumstances), granted dad the days off the Level 3 Priority List back.

On January 3, 2021, dad received a third call. Our entire family was incredibly anxious. 15 minutes passed after dad being taken to surgery, and we sighed a little bit of a relief because we knew the surgery was in progress. The surgery took about 6 hours, and the team at Vanderbilt were so accommodating; they kept us abreast on the doctors’ progress and dad’s condition throughout. Dad’s brother flew in from California again to be with dad. Because of COVID, I was not able to be with dad immediately after his surgery; I got to talk to my dad on the phone the day after he received the gift of life, and the first thing he said to me was, “I actually get to walk you down the aisle.” Dad spent 10 days in the ICU before being released to a condo in Nashville (medication after transplantation has to be carefully monitored to ensure the patient won’t experience organ rejection). The team(s) at Vanderbilt said dad was the best recovery they’d ever seen, and I have to believe a lot of that has to do with my dad’s incredibly hopeful attitude. Uncle Henry stayed with dad at the Nashville condo for three weeks until he drove him home back to Louisville and boarded a plane back to California.

Dad is doing so well- mentally and physically. We have so much to look forward to. Before dad’s transplant, we enjoyed holidays and moments together because there was a good chance that any given conversation could be our last. Now, we look forward to special occasions for the joy of knowing even more is to come.

Though we continue to celebrate dad’s second chance every day, the gravity of another family’s loss is by no means lost on us. We don’t know anything about the donor except that he was a 20-year-old male. As much as I’m overjoyed for my dad, I know a mother and father have to go to sleep sick every night because their son is no longer on Earth. Dad will have the opportunity to write a letter to the donor family in June 201, but writing, “thank you” feels like it devalues the gift of life we received and another family lost. Dad’s family and his friends think about and pray for the donor family everyday, if not every hour, and there aren’t sufficient words to write to a family who lost so much. I would move mountains for my dad, and I’m sure that if someone were selfless enough to become an organ donor, he or she must’ve been surrounded by selflessness, grace, and kindness in his or her life. The most sincere act of gratitude that my family can do (and is doing) is to speak on dad’s donor’s selflessness in the hopes that his act of incredible generosity will encourage others to register and save lives. Since dad’s journey began, my family became involved with Kentucky Organ Donor Affiliates and other organizations that promote donation. Our hopes are not only to give the gift of life to the 110,000 Americans waiting for a life-saving transplant but also to honor those who were selflessness enough to grant that wish.

 

 

 

Gail

Heart Transplant Recipient

No One can anticipate a true-life crisis. No one can imagine how, one minute your life is just wonderful. The next minute, nothing will ever be the same. No one can know how he or she will react to this kind of situation… no one until the crisis is about you. Fifteen years ago, I heard a diagnosis of viral myocardiopathy from my cardiologist. These words were followed with the prognosis that I might last another two-three years with my birth heart, but then I would need a heart transplant. The virus had attacked the lining around my heart and by the time it was diagnosed, much severe damage had been done. I spent the next years battling with surgeries and various drug protocols to stop further damage to my heart- always with the hope that there might be some healing and I could keep my birth heart. I made it for five years. Then, there was nothing more that could be done.. It was time for another transplant evaluation. It was now time to put myself on the transplant waitlist. I had no more choice if I wished to continue to live.

I had many friends and family members who were so incredibly supportive of me. However, I still felt alone facing this challenging ordeal. I had no girlfriends who had even battled heart disease… let alone a heart transplant. I desperately needed a female transplant survivor to talk to. A woman who had been down this life path- who could help me deal with the fears, the anxiety, and the unknown of what kind of life might be ahead. Indeed, I would have benefited greatly to have a mentor to be with me the entire time I was facing this battle. Much of successfully surviving is attributed to your mental strength and positive attitude. A mentor program for women facing transplant would be an invaluable asset to a successful survivor.

A second chance at life is truly the most realistic definition of a miracle. Faith, modern medicine, physician’s skills and one other person’s decision to donate his/her organs deserve nothing less than every possible system of support that can be given…honoring all the lives involved…honoring the real GIFT OF LIFE.

 

 

 

 

Anna

Kidney Transplant Recipient

My name is Anna Ovchinnikov & I live in North Pole, Alaska. 3 years ago I suddenly began to feel nauseous and had a hard time breathing. Going into the ER, my hemoglobin was 4 and they immediately  started giving me blood. This made my breathing worse and I was intubated and placed in a medically induced coma. Waking up, I saw that I was connected to a machine that was circulating and cleaning my blood. This was the beginning of my long 3 years of dialysis for 9 hours every day. Fast forward to 3 weeks ago – I received a phone call at 5 in the morning. “You need to fly out to Seattle today! There is a kidney match for you!” I couldn’t believe it! Is this really happening? I flew out and the next day, I was given my Christmas miracle – a new kidney 🙂 My lab results were instantly better & the kidney started working right away! The first 24 hours I produced 5 liters of  urine on my own! I’m so thankful to God and my donor for this gift of life.