The Ripples of Donation: Bob’s Story

By Helen Poe Keigley, donor wife

My husband Bob lit up a room when he walked in. He had a great sense of humor and you would never hear him say a bad word about anyone. We met just out of high school when we worked together at the same ‘mom and pop’ grocery store. The first time he saw me he told his friend “That’s the girl I am going to marry.” And he did! We were married September 12, 1981. Our son Robert was born in 1982, and our daughter Jennifer came along in 1984.

By 1995, life was going well for us – we were happy being married, working hard and raising our two kids. After we got back from a trip to Hawaii, Bob fell ill. We thought he might have contracted a parasite, so doctors gave him medication and encouraged him to quit smoking. The medication didn’t help and it wasn’t until he continued to complain to his doctor that more testing was done and revealed his heart was damaged.

During this same time period, Bob’s dad and sister were in heart failure.  We were told they had contracted the same virus that attacked Bob’s heart. There was no mention it might be a genetic condition. Although we were worried, we felt everything would work out as Bob began medication to manage his condition.

Twelve years passed and Bob once again fell ill. We went to our local hospital, but he was quickly flown by air ambulance to The Ohio State University Wexner Medical Center. Through extensive testing, we learned he was in total heart failure and doctors wanted to implant a Left Ventricular Assist Device (LVAD) to bridge him to a transplant. Bob would not survive without the LVAD and a new heart. Everything was happening so fast. e were in shock.

Doctors were firm – he would need a transplant to survive, but he must be smoke-free for six months to be eligible to be listed on the national transplant waiting list. Bob knew it would be difficult to quit smoking, but he knew he had to.

After the LVAD was implanted, Bob worked on being smoke-free. Unfortunately, just as he was to be listed, he suffered a stroke.   

Because of the stroke, Bob had to be removed from the list. He was sent home and we worked for months to rehabilitate him to get him back on the transplant list. In February 2008 he began to have some issues with his LVAD – he was told he needed a new pump. As we were wrapping our minds around this, the unimaginable happened.

Bob’s name displayed on the Lifeline of Ohio Donor Memorial

On February 21 he woke up and just didn’t feel right. I called 911 and a special team from Columbus came to transport him to the hospital in the middle of an ice storm. His right ventricle was weakening and his vitals were plummeting. We got him to the hospital after the longest ambulance ride of my life, and tragically on February 22, my sweet, funny, witty husband Bob passed away at age 48.

A true gift for our family through the pain was the decision for Bob to become an organ, eye and tissue donor. While we hadn’t discussed it before, we had been waiting for someone to donate to him, how could we not do the same for someone else and spare them the grief? Bob saved three lives through the donation of his kidneys and liver and gave the gift of sight to two people through cornea donation. It brings us comfort to know he lives on.

We’ve since received one letter from his kidney recipient. It was so wonderful to hear how Bob gave them their life back. While I haven’t written back yet, I am hoping to one day have the strength to reply.

In the years following Bob’s death, our daughter Jennifer has had to have an LVAD implanted – she has the same disease as her father and was diagnosed on his birthday, February 2, 2016.

Jennifer and Noah

After Jennifer was diagnosed we decided to take part in a study to isolate the gene that was wreaking havoc on our family. After having my son and Jennifer‘s kids tested, only Jennifer and her son Noah have the gene – BAG3.

Jennifer is doing well with her LVAD and Noah will be closely monitored and tested. While Jennifer is on the heart transplant list, she is not currently active.

The ripples of donation are far reaching for our family. First with Bob needing a heart and the ripple that extended with his gifts. And now, as we anticipate a hero to save Jennifer’s life and one day Noah’s, we are in awe of and celebrate the ripple effect of donation. I urge you to consider registering today to give hope to those waiting – like my sweet husband and now, daughter.

Aubri’s New Heart

By Karlynn Gamble, recipient mom

When I was 21 weeks pregnant, I had an ultrasound to find out the gender of my baby. At that appointment, I learned two things that would change my life – the baby was a girl and she would be born with a heart defect. I was shocked. The doctors told me she would need a series of three surgeries, but that the defect could be repaired. I was scared, but hopeful.

I went through the rest of my pregnancy learning about her condition – Hypoplastic Left Heart Syndrome – and the surgeries my baby would endure.

Aubri made her grand entrance in the world June 1, 2012. As I was told months earlier, she began to undergo surgery to repair her defect within days of being born. In the coming years, she was able to complete two of the three surgeries before our world was again rocked.

Aubri while waiting for her donor hero

On April 13, 2016 we went to Nationwide Children’s Hospital to have the final of the three surgeries. The surgery went well, but the outcome was less than desirable. Through many weeks of complications and setbacks, it was determined that Aubri would need a heart transplant to survive.

My mind automatically went to the worst case scenario. It was very scary to think my baby would need a new heart to survive. It was something I had never thought about. We now had to shift our thinking – we had to rely on the generosity of a stranger to save my little girl.

For the next seven months, Aubri was hospitalized. She turned four while in the hospital. She spent all of the summer and into the fall in the hospital. I can’t say enough about the staff at Nationwide Children’s – they took such great care of her. Everyone involved in her care tried to provide her with as normal of a childhood as they could.

Aubri today!

After more than six months in the hospital, we received the call on October 3, 2016 – a heart was available for Aubri! I cried for five minutes before I could talk to the nurse. Our miracle was here! Following a 10-hour surgery, Aubri was on the road to recovery. She was discharged from the hospital December 7, 2016 and she is living life! She’s been able to join her classmates back in preschool, play with her little sister and dance! She is now a typical four-year old with unending energy. All thanks to a family who said “yes” to donation at their darkest hour.

We received a letter from the donor family not long after her transplant. Wow. It was very emotional reading about the child who saved my daughter’s life. I am in the process of writing back – I look forward to letting them know how well Aubri is doing and to simply say “thank you” for giving our family a second chance.

Won’t you register as an organ, eye and tissue donor? Be a hero to another family, as Aubri’s donor has been to ours.

Thankful to my donors

 

By Deb Donelson, two-time kidney recipient

When I was 16, I found out I was born with only one kidney. My parents and I were surprised, because I had always been healthy. I continued on my path of good health until my mid-twenties when I started to see a nephrologist.

Before transplant – one of the rare pictures I allowed to be taken.

By the time I reached age 27, I was regularly seeing my nephrologist. It was then he told me I would most likely need a kidney transplant by the time I turned 43. I thought, “Okay, we’ll cross that bridge when we get there.” But lo and behold, when I turned 42, reality hit – my kidney was only functioning at 5 percent or less and I needed a transplant to live.

Fate then stepped in. My dad is in real estate and overheard a conversation between his co-workers.  One co-worker stated their daughter was testing to donate a kidney, and didn’t have a recipient.  Dad joined the conversation and asked if he thought their daughter would like to donate to me. This began my journey toward a new kidney.

Within days I was talking with my potential donor. She said it has been in her heart to donate a kidney and that she would like to be tested to be my living donor. I was shocked and elated! She began testing and the day before Thanksgiving 2012, we learned we were a match! More tests continued and a transplant date was finally set for February 13, 2013. We thought the day before Valentine’s Day was appropriate since her last name is Love.

Everything about the transplant went smoothly for both of us. My donor was healthy and healing well.  I remember waking up from surgery and immediately feeling better! It was as if everything was clear – like the fog I had been looking through was lifted. I felt like myself again.

My gifted kidney did its job and kept me healthy. Unfortunately, in October of 2014 it began to fail and a short time later I was forced to begin dialysis. Going through dialysis was miserable and restrictive, but I was thankful for an intervention to keep me going.  I went three times a week for four hours at a time. I felt awful about “losing” the kidney that had been so generously donated to me.  It took me a long time to have the conversation with my donor about the rejection.

After transplant – feeling wonderful!

Fast forward to May 7, 2016, my husband and I were getting ready to go out to dinner and watch the Kentucky Derby.  He heard my phone ring and saw it was the Ohio State Transplant Center calling. He gave me the phone and I thought, “Why are they calling me on a Saturday?” As it turned out, they were calling to offer me a kidney! It never occurred to me that I would actually get that call – I honestly didn’t even remember being placed on the national transplant waiting list!

I remember going to the hospital in a state of disbelief. The next thing I knew, I was awake and feeling 100 percent better! Within a day I was up and walking and went home four days following transplant. I was also drinking everything I wanted, which is something I couldn’t do on dialysis – it was exciting to be able to eat and drink as I pleased!

After being so sick and fatigued since losing my first kidney, I got back to my life the day after transplant. All thanks to someone – my hero – who had the forethought to register as an organ donor.

Thanks to both of my donors, I am alive and enjoying time with family and friends. My first donor’s gift made it possible for me to get married and live for my second lifesaving transplant.  I am forever indebted to the two selfless individuals who have enabled me to live a full, healthy and happy life. Please consider registering as an organ, eye and tissue donor today.

And the Show Goes on….Quentin’s Story

By Gwen Edwards

My son, Quentin, was unstoppable. Even with health setbacks, he always held his head high, danced through the storm and kept a smile on his face.

Quentin was diagnosed at age 12 with Alport Syndrome, a rare genetic disorder which damages the tiny blood vessels in the kidneys. He was diagnosed through a fluke – and it was found that other family members also carried the gene. Until Quentin was diagnosed, we had no idea of the familial connection.

As his uncles and cousin before him, Quentin’s disease progressed to the point where he needed a kidney transplant. Thankfully, my childhood friend stepped up to be his living donor, and at 20-years old, Quentin was given his life back! Just one-month after graduating from Baldwin Wallace College with his degree in Musical Theatre the transplant took place. Our family was beyond grateful for this gift – Quentin could plan his future.

Quentin performing as the Cat in the Pleasure Guild of Nationwide Children’s Hospital performance of “Honk”

After graduation, Quentin immersed himself in theater and dance. Doctors once said he may never be able to pursue his passion again. He moved to New York with the hope of becoming an actor.

Quentin chased his dream for years. Ten years after his transplant, in November 2010, his health began to decline again. He moved home to Ohio to be closer to family. Quentin was listed at the Ohio State University Wexner Medical Center for a new kidney, and his second wait began.

While waiting, Quentin and I founded State of the Arts Productions. He was a firm believer theater should be available to everyone and that is what he set out to do. He had been dismayed at the lack of diversity in theater in Columbus and made the decision to cast non-traditional roles in his theater. Despite Quentin having a stroke on January 1, 2013, the first show went off without a hitch. His dream was coming true.

And our family’s dream was coming true when a complete stranger offered to give Quentin one of her kidneys! However, he was a very difficult match, so instead of a direct exchange, Quentin and his donor decided to do a paired donation – this means Quentin would receive a kidney from a total stranger and his donor would donate to a total stranger.

Unfortunately, Quentin never made it to his second transplant. Due to complications from his dialysis catheter, his final curtain call came July 5, 2014. Quentin was 35-years old when he died.

The story doesn’t end there, though. Quentin’s living donor went on to donate her kidney in a six-person chain. She did this in honor of Quentin on the two-month anniversary of his passing.

I now keep the theater company going for him. He was such a strong and passionate man. I wish the ending of the story was different for my son, but I am passionate about carrying out his dream – of both the theater and organ, eye and tissue donation. Won’t you please consider registering as an organ, eye and tissue donor in his name? Give hope to those waiting.

 

Information on “Steel Magnolias”

Saving my Brother

By Miranda Bretthauer

My little brother, Jacob, is two years younger than me. While we are a typical brother/sister duo, we do have something that sets us apart from most siblings – I donated one of my kidneys to him in 2016!

Our story

Jacob was born in 1997, and even though he was born prematurely, they sent him home the day he was born.  After the first days at home, my mom felt something was off and she took him back to the hospital. It was there Jacob was diagnosed with Hypoplastic Left Heart Syndrome. My parents were stunned.

Within a short amount of time Jacob’s health declined rapidly. He suffered a stroke when he was just three months old. Following the stroke, his medical team informed us he would not be able to leave the hospital – Lomo Linda Hospital in CA – until a new heart was found. Our family was turned upside down by this news. We quickly came to the realization we had to rely on the kindness of a stranger to save my brother.

Thankfully, when he was four-months old, our family received the gift Jacob so desperately needed. A baby named Linda passed away from pneumonia and her family generously decided to donate her organs to help others. My brother received her heart, and while we’ve never spoken with the family, Jacob has always wanted to connect to say thank you.

In the years after his transplant, Jacob was healthy and living his life. However, his health started to change during his senior year in high school. His kidneys were failing. For the second time in his life, our family was told Jacob would need a transplant to survive.

Our transplant

I decided, as the big sister, to be tested to see if I could be his living donor. My parents were supportive of the idea and both Jacob and I were elated when we learned I was a match! A transplant date was set for July 22, 2016 at The Ohio State University Wexner Medical Center.

Leading up to the transplant Jacob was tired and sleeping all the time. He just wanted to feel better. For me, the transplant couldn’t come soon enough. I just wanted my brother back in good health.

The day of the surgery, it felt like an out of body experience. I was nervous – I had never had surgery before. When I awoke from surgery, I remember being in pain, but it subsided soon enough. Jacob, on the other hand, was feeling excellent! His new kidney started working right away and he was soon lapping me in the hallways!

We are now eight months post-transplant and all is well. Doctors have been monitoring Jacob to make sure both his transplanted heart and kidney are in great shape. When he is completely healed and ready, Jacob hopes to go to a trade school or technical college to be a computer programmer. I am back in school and will soon receive my Associate’s Degree in special education.

In all I’ve learned through this process, I now know there is no real excuse to not be a donor. If you can give while you are living, I highly encourage it. If not, please consider registering as an organ, eye and tissue donor and give the gifts of life, sight and healing after you have died. It’ll be one of the best decisions you’ve ever made! My brother is living proof that donation, both living and deceased, matters.