Losing A Best Friend

The beginning of 2010 has been an emotional one, especially with the loss of one of my closest and dearest friends, Jana. Jana Kelly Sheets passed away on January 6th 2010 at the young age of 35. Jana and I had met three years ago at the Center for Living (CFL) after my second lung transplant at Duke. She was the first person to come to me and invite me into the “group”, at the time there were four other girls’ pre-and-post transplant at the rehabilitation center all around the same age. I noticed that Jana was still on oxygen but I knew she had already had her transplant. Was her surgery unsuccessful? Was she stuck to this breathing machine for the rest of her life? Jayna (as she often liked to change the spelling of her name so people would say it correctly) suffered from a rare orphan disease called Lymphangiomatosis (LYMPH), in lemans terms, a lymphatic disease that affects multiple organs and tissues of the body, including and not limited to the lungs, bones, heart, stomach, connective tissue, and bones. Non-cancerous tumors grow in the lymphatic system and lymph fluid can build in the abdominal cavity, causing pain and difficulty breathing. Diagnosis is often difficult and can be confused with many other diseases. There are very few cases reported in the U.S. Jana was the first as far as medical records show to have a lung transplant that added an additional 5+ years to her life.

Jana was a very devoted wife, step-mother, daughter, sister, and friend. She dedicated her time to the LGDA Alliance, her family, her own health, and the joy of helping others. She loved her two cats dearly (Techno & Roxy), enjoyed cooking and reading, and treasured each day she spent happy, healthy and alive. I will always remember her joyful smile, her radiant glow, and the calming presence about her. She was never afraid or shy about sharing her disease, but eager to tell people of the new information, research, and outcomes. We spent so many memorable times together, but the best was the unplanned days where we laid in bed talking of fears, husbands, pet peeves, and gossiping about the hottest doctors. Kristine was also another of the “three musketeers.” The three of us loved to dine out, especially sushi (not raw of course!!) and Thai food, and enjoy the company and laughter of each other. We often laughed at how organized Jana was, but she was actually the one to plan her own “Celebration of Life.” She focused on details, numbers, and spelling. She had an eye for editing, and a knack for personal and media communication. Despite the odds against her Jana lived a full and extensive life. She lived in several states, held many respectable professions, made friends wherever she went, promoted awareness of LYMPH and organ transplant, and traveled often to her favorite vacation spot, Brant Lake in New York. This is one place she has asked her husband and family to spread her ashes in the coming months.

I would just like to commend her husband, Eric. He was her biggest support and managed her care more then anyone will ever know. Eric is a patient, gentle, and quiet man who wholeheartedly gave his life to Jana. I wish him all the best in his feature endeavors. To her parents: Suzanne and Jack, Congratulations! You two have raised such a wonderful and compassionate daughter. I am so lucky to have known her for the short time that I did. To Gavin: you are so lucky to have had such a caring step-mother. She loved you as her own and hopes for the best in everything you do.

And to Jana…
You will be missed! You have shed your positive spirit on so many people here on Earth. Each day we think of you, hoping there is a heaven and you can help guide us throughout the rest of this journey we call “Life.” I love you always and forever.

Lymphangiomatosis in the in the News

News Article about Jana dates August 20th, 2009.

Jana Kelly Sheets:

Arrangements have been made for the Celebration of Life for Jana Sheets. Please join her family and friends on Saturday January 16th a 2:00pm in The Duke Gardens Clubhouse in Durham, North Carolina to honor the life and legacy of Jana. She had requested no memorial services but a gathering of friends and loved ones to reflect on her life, experiences, memories, and accomplishments. Please dress casual and no black, but colors that shine the light of her spirit.

In lieu of flowers please donate to the LGD Alliance at www.lgdalliance.org. This Foundation, Lymphangiomatosis and Gorham’s Disease, was founded by Jana and her father, Jack Kelly to gather research and clinical trials for awareness to medical personnel and to help other patients cope with this and other orphan diseases.

An article Featuring Jana posted January 9th, 2010.