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.

Waiting for my Donor Hero

By Marshall Cheatham, candidate for kidney transplant

For more than three years I have been going to dialysis three times a week for five hours at a time. Dialysis is keeping me alive while I anxiously wait to receive my Gift of Life.

Years ago, after I went to my primary care doctor for a checkup, he noticed my creatinine was high and there was protein in my urine. He referred me to a nephrologist where I learned my kidneys were only functioning at 30 percent. I had no idea I was sick! My nephrologist prescribed medication, and for two years, I maintained my health and a sense of normalcy.

Then one day in January of 2014 everything changed. While at work, I started to feel very ill. My boss told me to go home and I called my wife to tell her. She thought I sounded off and after we hung up, she called my doctor who said I should head straight to the emergency department.

Once I arrived at the hospital, they immediately started me on dialysis. I remember nurses starting IVs and a whole rush of people around me. I was very, very ill and truly didn’t know what was happening.

It was only a few days later I learned I would need a kidney transplant. I was shocked. The day I heard those words, mortality hit me hard. I just couldn’t believe it.

I don’t want to be a downer, but life on dialysis is hard. Thankfully, I have a supportive family and am strong in my faith. Otherwise, I am not sure I would have endured the mental and physical toll it takes on me every time I arrive at the dialysis center. It is very hard for my life to be on hold while it seems as though everyone else is busy living.

When a donor and the precious Gift of Life does come my way, I have a bucket list prepared! First, I want to take a trip out west to see the Grand Canyon with my wife. I want to travel to Atlanta to see my two daughters and my grandbaby. Almost above all, I can’t wait to return to the Columbus Saints. I founded the Saints in 2003 – we are a nonprofit organization dedicated to fostering music education and performance excellence in the marching arts within Central Ohio. Drumming has been my passion for so long – I can’t wait to return with full force and continue the work we do with kids in Columbus.

People often ask me what it’s like to wait. With nearly 100,000 Americans waiting for a life-saving kidney transplant, my advice to people like me is to not get bogged down in the waiting process. Instead, focus on something you can throw yourself into. Find a purpose and a reason to live. Occupy your time and the waiting time will not feel so long.

. Give hope to those waiting, like me. Thank you.

Through Maggie’s Eyes

By Kathy Lyons, Donor Mom

My daughter Maggie (we called her Mags) was so very loved. She loved unconditionally, loved to give hugs and had the sweetest little smile. She loved without ever saying a word.

When Mags was fourteen-months old, she began to have seizures. Her seizures were never long, but instead came in clusters. For years, we went from doctor to doctor who could never give us an explanation, or diagnosis, as to what was happening with our baby.

Thankfully, we were able to get the seizures under control, and for nearly two years she was seizure free. Then right around age five they came back and never left.

When she was ten we finally received a diagnosis – Lennox-Gastaut syndrome. This syndrome is a type of epilepsy with multiple different types of seizures. Intellectual development is usually, but not always, impaired. In Mags’ case, she had been non-verbal her whole life.

We felt relief to have a diagnosis and to know what we were dealing with. I’ve always been my daughter’s voice and advocate and with the diagnosis in hand, we could move forward with knowledge.

Fast forward to Friday, November 18, 2016, Mags was 16. We had just gotten back from a neurologist appointment where everything checked out fine. Mags went to bed, as she did any other night. The next morning after my husband and I woke, she still wasn’t up. When I went in to check on her, I found my sweet girl laying unresponsive. In a panic, I performed CPR while we waited for the paramedics to arrive.

Unfortunately, our sweet girl’s life ended on November 19 from SUDEP – sudden unexpected death in epilepsy. At the hospital, I requested Mags to be a donor. Our whole family was already registered, my husband and I and our two other children. Our wish was granted and Mags went on to give the gifts of sight and healing through tissue donation.

Weeks after Mags passed, we received a letter that informed us her corneas went to New Zealand and two people were now seeing because of her! With the donation of her tissues, we also know that more than 50 people will benefit from her. She was given this opportunity to make a difference in this world and has she ever!

We believe Mags was given to us for a reason. One of the reasons is to advocate for organ, eye and tissue donation. Our family is carrying on Mags’ love by telling others about her gifts. Organ donation is such a beautiful gift, won’t you consider registering today?

The Colors Are Amazing!

Cindy CrawfordWhile taking her vision test at the License Bureau, Cindy Crawford realized she was having trouble seeing the graphics on the screen.  After barely passing the test, the clerk mentioned she might want to have her vision checked.  Cindy was concerned because she just had been to the eye doctor and was told her vision was okay.  Years before, she had been informed of a degenerative eye disease that would eventually cause her vision to fail.  Cindy feared that time had come.

She was referred by her eye doctor to a specialist in Columbus and was told that her disease, Fuchs Dystrophy, was progressive and that her only course of treatment would eventually be a corneal transplant.  For the moment her eyesight, although poor, was not quite at the point that required a transplant.  Her doctor prescribed medication and adjusted her glasses, with the hope that her vision would stabilize.

For the next two years Cindy lived her life, watched her grandchildren grow, and even accepted a job as a manager at the Lima Bowsher BMV agency.  Her employer and co-workers supported Cindy with the tools she needed to do her job by providing lights, magnifiers and assistance when it was required.  Unfortunately, her vision continued to fail and in 2011 she was unable to drive and she squinted constantly as she struggled to see. “It was like I was driving through fog all the time,” she recalls.  It was hard to see anything.” She knew it was time for her to be listed to receive a corneal transplant.

“For me, it wasn’t a choice,” she says. “There is no cure for my disease and I knew if I wanted to have any sort of life-working or helping out with my grandchildren, I would need the transplant.”

NEDM 2017 Twitter Profile PhotoOn the day before Thanksgiving in 2011, Cindy received the first of two corneal transplants.  She received her second in August 2013.  Thanks to two generous donors, Cindy was able to see clearly again. “I am so grateful to both of my donors,” she declares, adding that she has written both of their families “to offer my condolences and to thank them.”

Now, when Cindy works at the BMV she can see clearly out of the large picture windows.

“The colors and brightness are amazing!” she says.  “I didn’t realize how bad my vision was until I received these transplants.”  When time and opportunity permits Cindy shares her story with others.  She considers it her way of paying it forward: “It takes a lot for a transplant like mine to occur- a heroic donor, doctors, staff, technology and more.  I thank God for making it ALL possible so I could have my returned sight.”

To be a hero like Cindy’s two donors, please register today!

My wife, my hero

By Greg Smith, kidney recipient

TreeRandi and I were sixteen and in high school when we started dating. Our relationship was brand new when I received unexpected news – I was diagnosed with focal segmental glomerulosclerosis (FSGS). My kidneys weren’t working correctly and my doctor told me I would need a kidney transplant in the future.  After talking to my parents about this diagnosis, I met with Randi to tell her the news. Without hesitation she said, “Don’t worry, I’ll give you one of mine!”

Several years later, we were married and began our lives together. I found the best way to combat my kidney disease was through being physically active – I raced bicycles and competed in triathlons to stay in top physical condition. Through the years as my kidney function depleted, I kept moving and thankfully never needed dialysis.

OSUAs our lives together grew, Randi was tested to be my living donor. When it was found she was a match, we were elated!  After moving several times, and being listed at several transplant centers, we made a home in Columbus and I was listed at The Ohio State University Wexner Medical Center. A date for the transplant was set – December 21, 2012.

The days leading up to the transplant were nerve-wracking however, I remained very active. In fact, just four days before transplant, I rode my bike for 80-miles!

When the day of the transplant finally came, I remember being very worried about Randi. I didn’t want anything bad to happen to her as a result of the surgery.

Green chairRandi went into surgery first and seeing her being wheeled off to the operating room was very difficult, even though we were both confident for a positive outcome. She was the first thing I asked about after coming out of anesthesia. She was doing well and the transplant had gone smoothly on both sides. We were able to go home several days after surgery.

Life post-transplant has been great, with just a few minor bumps along the way. Thanks to the Gift of Life Randi provided me and the excellent care of Dr. Bumgardner and the team of medical professionals at Ohio State, I have enjoyed more than three and a half years of excellent health.

On their four-year transplant anniversary

On their four-year transplant anniversary

The amazing thing about Randi’s donation is that she not only saved my life, but potentially the lives of two complete strangers. Since I had been listed at two other transplant centers before settling in Columbus, I was still on their wait lists. During the time Randi was being worked up at Ohio State, I received two calls for matching kidneys. Since I already had a donor lined up, I was able to pass on those kidneys which most likely went to the next person on the transplant list. Incredible!

When I asked Randi why she offered to donate a kidney to me when she was only 16, she responded that she thought it was the right thing to do. Won’t you consider being a donor? You can register to donate after your death by visiting www.lifelineofohio.org, or if you are interested in becoming a living donor, please visit https://wexnermedical.osu.edu/transplant/living-kidney-donation.