February 14th is not only Valentine's Day, but also National Donor Day!
To celebrate, ConnectLife is sharing love stories continued because of organ donation and transplantation. Every family and every person has a different journey they take through the donation process. BUT one thing is true for each of these stories - and that is organ donation is a journey of love.
To read six inspiring stories of love, hope, and transplantation, click on the names below.
- Paulette & Richard
- Stephen & Jennifer
- Danea Johnson
- Jeff Carter
- Naomi & Mark
- Brittany & Caleb
Story as told by Paulette,
Richard and I met in 1994 in an elevator in downtown Buffalo. At that time, we were both very active and shared similar interests. When we weren’t working, we were out having fun or exercising at the gym. We enjoyed playing tennis and had a great love for music and dancing.
I had been diagnosed with cardiomyopathy in 1985 and my first cardiac arrest was in 1990. As the years progressed, I was unable to play any type of sport, work out at a gym, travel, or dance. Richard was always helping me up a hill or stairs and would assist me when I had problems walking. Due to continuous cardiac arrests, I qualified for a heart transplant in April 2013 at Strong Memorial in Rochester, NY.
Living in Buffalo, Rich would drive back and forth a few times a week and spend every weekend in a hotel. He would come with my family and friends as often as they were able. After two months of waiting, I became depressed and just wanted to go home. He would always have a smile and do his best to keep me positive and entertained. After four months, I received my heart.
We are so blessed to have met my donor family and hear about the wonderful daughter my donor was. I am happy to say that we are playing sports again, dancing, traveling, riding bikes and always honoring the memory of the life I have been given. Our life together would have never been possible without organ donation.
To listen to Paulette's story, listen to ConnectLife's NEW podcast Episode 1: A Lifesaving Resolution.
Story as told by Stephen,
What if I told you that my two favorite Valentines are the result of receiving the gift of life?? My wife Jennifer and I: college sweethearts that decided after three years of dating to marry and start our lives together.
Unfortunately, Jennifer contracted a blood disorder that caused her kidneys to fail shortly after our engagement. Literally, the toughest 5’1” person you would ever meet, she went into kidney dialysis and planning a wedding with equal determination.
Four years after marrying, Jennifer was given the gift of life through kidney donation. Remember the toughest person thing? Her desire to be a mom led us to have our Ryan in 2000.
Though Jennifer’s battle with her blood disorder ultimately led to her passing, the gift of life gave us 22 years of marriage, her legacy in Ryan, and eternal gratitude for her donor.
Story as told by Danea,
My Kidney Transplant Love Story: I was born with a kidney disease, which was discovered about 6 weeks into my life. At that time, my nephrologist told my parents that I would need to have a kidney transplant one day. Fast forward to when I was 11 and I went on dialysis and was placed on the Waiting List.
I was on the list for 11 months when on January 27, 1996, I found out that UNYTS (now ConnectLife) had found a kidney for me. On January 28, 1996 (SuperBowl Sunday- Dallas won) I had my first kidney transplant! I have now formed an unbreakable bond with Mark the father of the boy’s kidney I received. I wouldn’t be on this earth without Mark and his selfless decision that night.
Fast forward to December 18, 2017, I received the second most important call of my life and had my second kidney transplant on December 19, 2017. This time around, the experience was much different. I was an adult, with adult responsibilities. I was in love with a man named Jason, and we both feel like we waiting so long for him to finally be able to see me “at full capacity” as I was ill the entire time he knew me.
I try to live each day to the fullest, knowing that I was given two gifts of life and knowing how precious life can be. Inspired to join the registry? Do so here - ConnectLife.org/Register
Story as told by Jeff,
I would like to share my organ donation love story with you. This is the ideal time to do so because I received my kidney transplant two years ago on February 5, 2018. The entire journey to this transplant is one of love.
This is my second transplant having received the first one in 1999 from my father. My kidneys first started to fail in 1990 when I was 16, and by 1993 they had completely shut down. Fortunately, my father was told that he could be a donor and in October he gave me a kidney.
That kidney allowed me to continue my life and eventually meet my wife, start a career, and start a family. Unfortunately, that kidney failed in 2015.
Two of my close friends decided to have a benefit for my family to raise money and awareness of my plight. Less than six months later I was the recipient of a new kidney from a man I had known close to twenty years without even having to ask for it.
This kidney has allowed me to continue with and expand on the three great loves of my life. My wife, my three children, and my job.
This transplant has given me the strength and wellbeing to keep up with all of my little guys and it gives me great joy to be able to continue in this field. This is all possible thanks to the love and selflessness of my friend Ben.
Story as told by Naomi,
My name is Naomi. Organ donation saved my life.
In 2007, after moving home to Buffalo, I went on a blind date with a man named Mark. This is our story.
The manager of the local gym where we both belonged thought we might be a good match.
When we met in person the following Saturday night, I immediately took notice of his dark brown eyes, dark hair, dimples, and athletic stature. But, what I adored most about him was that he was respectful and courteous. After conversing over dinner, I found out that we were both reading books by the same author, we had both graduated from Hamburg, and we had a very similar upbringing.
We hit it off, continued dating, I really liked him a lot and I think he liked me. But there was one detail that I hadn’t told him about yet: I had Cystic Fibrosis. CF, as it is also called, is genetic and affects the lungs primarily. I had been in and out of the hospital since I was 15 for antibiotic treatment. Even though I had met this wonderful person in Mark, I was terrified to tell him about my CF. The reality was that I might get so sick in the future, I would need a lung transplant.
Even though I was working at a brokerage downtown, I was struggling to keep up with my healthcare regimen of daily treatments and regular hospital stays. Mark was a highly motivated CPA at a global company.
When I finally had the courage to tell him about my CF, he was concerned and had lots of questions. But when most men would run the other way, he stayed by my side.
He came to visit me during many of my hospital stays and even helped me sneak out, past the nurse’s station, and escape to the pizzeria down the street so I could satisfy my cravings for anything other than hospital food. I cherished fresh air, hot pizza, and a change of scenery.
One of my favorite visits from him involved using his backpack as a transport for sneaking my little dog Ava into the hospital and up to my room for my very own canine therapy. I think the nurses knew all along, but they understood. I was always afraid the roaring laughter from the nurses who had knocked on the door and were greeted by tiny growls from a protective Chihuahua would have Mark escorted by security never to return again with his secret furry, healing stowaway.
As hospital visits grew more frequent and closer together, the IV medicines stopped being effective altogether.
Every couple has challenges and obstacles to overcome. Hopefully each person can learn from and decide that the love that they have for each other can still prove stronger than the hardships. I don’t think Mark quite understood what hardships meant when he asked me to marry him a couple years after we met.
March 2010, we were married.
As my health deteriorated, Mark was traveling more and more at his corporate job, and I was struggling to live a normal life. I had stopped working due to the increased amount of lung treatments and the fatigue that comes with permanent lung damage. I had started investigating lung transplant before I had met Mark, and made sure I understood what was involved. There is no cure for CF and at that time, a lung transplant was my best option to live a somewhat normal life again.
On Thanksgiving Day 2012, I was experiencing acute chest pain with every breath. Mark drove me, in haste, through more than one red light to the hospital ER. The doctors could not pinpoint the exact reason for the sudden bolts of pain searing through my chest wall every time I tried to breathe.
The doctors were doing everything they could to help me breathe but nothing was working. During these long sleepless nights of pain and suffering, Mark stood guard outside my hospital room to protect anyone at all from passing through and interrupting whatever broken minutes of sleep I could catch.
When we were handed the advanced directive for end of life instructions, he helped me fill it out. I scribbled my signature and a doctor witnessed.
Two days later, when the helicopter that was arranged to fly us to Pittsburgh was cancelled due to severe snow and cloud cover, I was put in an ambulance, Mark at my side, and traveled all the way to Pittsburgh over the speed limit, with the lights and sirens on for 3.5 hours through the terrible snow storm. I lay there, eyes closed, not able to speak, and listened to his calming voice.
Doctors in Pitt diagnosed an aggressive pneumonia and within a few days doctors said my only chance to survive would be to get on the lung transplant waiting list. After arriving in Pittsburgh, they did everything they could to stabilize me. I was now in the Intensive Care Unit.
Helpless to relieve my suffering, Mark could only hold my hand and pray. Doctors asked Mark to stay at my side for every moment that was humanly possible. As soon as he let go of my hand and left the room, my heart literally sensed his absence. With my eyes closed and unable to speak, my body became anxious and could not calm itself. It was only when Mark returned to the room that my heart rate decreased, blood pressure alleviated, and vital signs began to recover.
The ventilator then became my only chance to survive the wait for new lungs. The doctors kept telling him that as long as I was still in the fight, and still responding, and I had a heartbeat, there was still hope.
January 4, 2013, Mark’s phone rang at 3:30 in the morning.
That was the call that changed everything for us. A mother who had said goodbye to her son, had given me a chance to live again. By 11:00 am, I was in surgery and 12 hours after that, this precious gift of new lungs was a part of me. The surgeon told us that as soon as my new lungs were attached, they could tell my heart was so happy.
Our life changed dramatically. I never really realized how sick I was until I could finally breathe. Before transplant, I could barely walk, talk, I couldn’t carry a laundry basket, and I couldn’t tie my shoe without struggling. After my lung transplant, I was riding horses, running 5ks, and doing things I couldn’t do since I was a teenager. I was living again!
One of the facts about receiving a vital organ, was that once you receive a transplant, you are on medication for life. After living 4.5 years vibrantly with my new lungs, the medications after lung transplant had landed me on the kidney transplant waiting list.
I felt devastated and defeated. Mark immediately called to see if he could be evaluated to be a living kidney donor. It was highly unlikely that we could we would be a match. In addition to Mark, my brother Nick called the hospital to find out how he could get tested as well. Not only was my brother an excellent match, Mark was a great match as well!
Because Nick was a closer genetic match, Nick was chosen to be my living donor. When I think about how selfless living donation is, I realized, it’s not just the surgery that is the risk. My brother was married with a young toddler and they had recently found out were expecting another baby in the spring. Nick has always been a person of character and compassion, but I felt uncertain. He had many significant risks to consider. I also knew that both he and his wife were determined to do whatever they could to help me live a healthier life.
In May 2018, all was going according to plan for our surgery. Doctors assured Mark and myself that this transplant would be an easier surgery and a much faster recovery for me.
It wasn’t until the next day after surgery when we found out something had gone terribly wrong. As with any surgery, there are always risks and we put our trust in the doctors to do their best, but things can still go wrong. Emergency surgery to repair the damage was unsuccessful.
Nick and I continued to communicate once he was released after a couple days after surgery and I was relieved that his procedure had gone exactly as planned.
In the months that followed, I again found myself facing kidney failure. During this time, Nick could have chosen to be resentful or distant, but instead he constantly and continually shows compassion and understanding.
Nine months later, Mark and I were transferring care to Pittsburgh to see if there was anything that could be done to save Nick’s kidney. At my first visit, the doctors were honest and forthright: if the kidney had not healed by now, we very well may be looking to find another kidney.
In the back of my mind, I knew those words were coming to me, but I had no idea how much I would need the assurance from Mark to support me in this disappointment. That day I left the hospital in Pittsburgh from that first kidney appointment, I got in the car, and all Mark did was smile, and hold my hand. “You can have mine,” were his only words.
When Mark called Pittsburgh the following day to find out how to be tested as a living donor, he was notified the process to be evaluated would start from the beginning. All the testing he had gone through once the previous year, would have to be completed all over again since it was a different facility.
Mark and I both felt a sense of calm because we knew that he had been a match previously. However, after speaking with the nurse in one of his first calls to Pittsburgh, he was informed that he and I may not be a match anymore.
Because I had received so many blood transfusions during my first kidney transplant surgery, there was a good chance that the blood I received could have changed our likelihood of being a match. It would take several weeks to know for sure if he was indeed still a match for me - but I didn’t have several weeks to spare.
Dialysis was on the horizon which has a high risk of infection for someone who already was taking immunosuppression medication. Having to wait several more weeks to find out if Mark was still a match was agonizing.
The dialysis catheter placement was scheduled and Mark’s evaluation was complete. The question still remained whether or not he was still a match and if would he was an approved donor. On the day of my catheter placement, I called and asked permission for the surgeon to delay the surgery. I wanted to wait one more week because we were expecting an answer any day about whether or not Mark was still a match, and they kindly agreed to postpone the appt.
That very same day that I was to have my catheter placed for dialysis, Mark got a call at 4:00 pm. The news was RESOUNDING: He was still a GREAT match! We were on the surgical schedule for surgery in ONE WEEK! All I could do was cry and laugh! How completely miraculous! Being unrelated, the likelihood that we could be a match was so small! We would drive to Pittsburgh the very next morning for our pre-surgical meetings. I don’t think we have ever drove to Pittsburgh with more purpose or with more anticipation. Our surgeon was present and with the calmest self-assurance, he gave us our confidence back. The very last detail was the hospital committee meeting that day. As long as the hospital committee voted to approve the results from his tests, transplant surgery would continue on schedule.
How could we have ever seen this coming? I grieved for the loss of what my brother had endured, but I was elated with the knowledge of this special bond that Mark and I would share.
As we walked out of our pre-surgical meetings that day, Mark’s phone rang again. It was the nurse from the Pittsburgh living donor program. “Mark, we just wanted to tell you that you have been evaluated by committee and are now Naomi’s approved donor.” Halleluiah!
Surgery was gratefully uneventful. Their expertise in surgery and Mark’s love in action had given me a beautiful gift. Living donation is more than an act of bravery, it is epitome of what selfless unconditional love exemplifies.
Every day that I live is another day that I can be proud of the resilience Mark and I have demonstrated. This is what love does. It keeps on going. It keeps fighting. Love is the work we do, the sacrifices we make because what comes out of these challenges brings purpose in life. It makes our life have meaning and in these struggles we see what we’re made of.
I have never believed in coincidence. But I do believe in the power we have to help each other.
That’s what organ donation is all about.
Story as told by Brittany,
Caleb was born on September 18th, 2014; he was a healthy 9 lb. 2 oz. and 21 inch baby boy! Within 24 hours of his birth, we were notified that his bilirubin level was high, and we would need to follow up with his doctors. After the first couple of weeks (in which we were told that normal baby jaundice would go away), it was clear that he wasn't getting any better.
Unfortunately we had a doctor that did not seem to worry over his condition, and kept telling us it would resolve. However, after turning 3 months old, his condition only seemed to be getting worse, so as his concerned mother, I pushed for further in depth testing to see what was going on in his liver. These tests came back extremely high, and it catapulted us into a whirlwind of chaos and stress. Our baby had some unknown liver issue.
By 4 months old, Caleb was officially diagnosed with a rare pediatric liver disease called Biliary Atresia. Biliary Atresia is a congenital disease where the bile ducts become inflamed and/or blocked just before or soon after birth. This causes bile to remain in the liver, where it starts to destroy liver cells rapidly and cause cirrhosis, or scarring of the liver. When Caleb was finally diagnosed at 4 months old, he was found to be in end-stage liver failure, stage 4. He received his first major surgery, called the Kasai, in hopes to prolong his native liver just a bit longer.
Unfortunately this was not successful, and only further progressed his condition. By 5 months old, the liver specialists gave us a window of 3-6 more weeks with our precious baby boy; we needed to find a donor- and fast.
On our Facebook Page, Caleb's Journey (www.facebook.com/calebfightsba), we had an outpouring of love from people all over the country wanting to apply to be his donor. Hundreds of people contacted our home hospital, overwhelming our amazing transplant coordinator.
Even after evaluating one potential donor, we found that she was not a perfect match, and our hearts broke wondering if our son would live to see his 1st birthday. Soon after the rejection of the first potential donor, my husband was approached by our team asking why he didn't apply to be the donor. Our son is A+, and unfortunately my husband is AB+, not a blood match. We quickly were told that since Caleb was still under 1 year, he had not built up the antibodies to reject the B antigens in his blood, and therefore could accept his daddy's liver!
Without any hesitation, Brian jumped on the opportunity, and within a week he was accepted to be Caleb's donor. Brian and Caleb were wheeled into transplant on March 20th, 2015 at 7 am in the morning, and by 6 pm that evening Caleb had his daddy's perfect liver.
That weekend was not at all easy, in fact Caleb had an unexpected complication that almost took him from us, but God had His hand in it every step of the way, and Caleb pulled through. We spent 1.5 years fighting off rejection scares, but since the summer of 2016, Caleb has been on 1 medicine twice a day (he started on 15 medicines right out of transplant!).
Our family will be celebrating 5 years post-transplant within the next few weeks, and it just amazes me how far we have come since that awful, beautiful day. My husband, Caleb's daddy, courageously went under the knife in order to save his son's life. It was not an easy surgery, and it was pretty rough to recover from, but he did it knowing he had the chance to help save his son. There is no greater love than sacrificing one’s self for another, and no greater gift than the gift of life! Caleb is currently a healthy, thriving 5 year old, who attends kindergarten, and loves dinosaurs, Legos, and climbing trees. We have been blessed with being able to make memories as a family of five, and I couldn't ask for anything more than that.
Feeling Inspired By These Stories?
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