Intestinal Malrotation Foundation
Spreading Awareness and Offering Resources to Families Dealing with Intestinal Malrotation

Stories

Intestinal Malrotation Stories

Auburn's Organ Recipient Story

I had never heard of intestinal malrotation or volvulus until I met the family of the boy whose organ donation saved my life.

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I was diagnosed with cystic fibrosis at two and a half years old. I had been perpetually sick since birth, and doctors were unable to find an explanation initially. An allergist finally suggested a sweat test, he figured it was a long shot, but the test came up positive.

Cystic fibrosis is genetic disorder that affects the production of mucus in a person’s body. This mucus can cause issues in many different organs, in my case it mostly affected my lungs. By the time I was officially diagnosed, I had been suffering with pneumonia for almost 3 years. Doctors tried all sorts of lung lavages and medications but the lobe of my lung was completely dead, at age four I had my first lobectomy.

I spent a month or two at the hospital each year as a child. People with cystic fibrosis often have a hard time digesting food and must take enzymes to help break down what they eat. At age six I ended up with an intestinal blockage that resulted in the removal of most of my large intestine. I don’t remember much aside from watching orange popsicle come out of my ileostomy. My treatment for cystic fibrosis included nebulizers as well as a vest to shake the mucus out of my lungs. When I hit my teenage years, I went through a phase where I didn’t want to have cystic fibrosis, so I didn’t take care of my health as well as I should have. This led to a second lobectomy at age 13.

After the second lobectomy, I never missed another treatment.

By the time I was 26 I was on supplemental oxygen 24/7 and went monthly for pulmonary function tests. Each month the tests got lower and lower. It became increasingly difficult to walk anywhere. I would drive to the grocery store, sit in the parking lot for 30 minutes, then go home because I decided I didn’t need groceries enough to use up all my energy. My CF specialist finally recommended I transfer my care to Duke University Hospital, as I was nearing my time towards transplant or death.

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With my lungs functioning at 19% and the need for oxygen constantly increasing, the doctors at Duke agreed it was time for me to be put on the transplant list.

Within a week, I had three calls from the national transplant list but none of them worked out. It was hard, but I kept telling myself it wasn’t meant to be. I prayed that the person who would eventually end up being my donor was enjoying the time they had with their family.

On October 23 at 7 p.m. I received a fourth call and headed to the hospital for pre-surgery testing. They assessed my lung function, oxygen need, blood sugar, weight, heart, digestion, strength, and swallowing, to be sure I wouldn’t aspirate into my new lungs. They decided I was well enough for surgery and on October 24 at 3 a.m. I received my new lungs.

At that point in time I wasn’t allowed to know anything about my donor. The only thing I heard the surgeon say was that my donor had “pristine lungs, the Porsche of lungs.” I wanted to know more about my donor than that. Duke recommended waiting a year to write my donor’s family, but I couldn’t wait. Because the lungs were small, and the surgeon had said they were pristine, I thought they might have belonged to a child. I really wanted to say thank you to this person’s family. I was finally breathing for the first time in my life, and I had my donor to thank for that.

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I decided to send a letter, just telling them everything I’d been able to do since my transplant. Things as simple as singing to the radio, playing in the snow, and walking without pulling an oxygen tank behind me.

Shortly after writing, I received a response. I wasn’t home at the time, but I simply couldn't wait to read it, so I had my dad scan and email it to me. I sat in the car sobbing with a huge smile on my face.  The letter was from my donor’s mom Jia, she told me all about her son Dre.

Dre had been 11 years old when he died suddenly of intestinal malrotation and volvulus. He'd been an athlete, a brother, a friend and a son.

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Jia described Dre with such joy. I could feel through her writing how much she loved him and how giving of a person Dre had been. Before contacting Dre’s family, I’d had several dreams of a young blonde girl telling me she loved roller coasters. It turned out Dre was a young blonde boy who loved roller coasters.

I looked for Jia on social media and messaged her right away. We got to meet for the first time when Jia and her husband were house hunting in North Carolina. When she walked in the room I felt my heart skip a beat. I hugged her and thanked her. We sat for dinner and talked, I think we could have stayed there all night talking.

Jia is such a wonderful compassionate person and I couldn’t be more thankful for Dre and how he worked with God to put Jia and her family in my life. Even though we’re close in age, Jia has become like a second mother to me. Technically, she is the mother to a part of me. I now have pictures of Dre on my phone, whenever I am in a slump I look at those pictures and say Do It For Dre.

Read Dre's Story

 

If you would like to share your experience with intestinal malrotation, please send us an email for more information.