Benefit for Radford alum with rare kidney disorder is March 9 in Salem
A benefit for Radford alum Jenny Mays DeLorenzo, who has a rare kidney disorder, will be held March 9, 2013, at 7 p.m. at the Mountain View Center, 714 13th St. S.W. in Salem. Her longtime friend Wendy Maxey shares her story:
One of my best friends, Jenny Mays DeLorenzo, is in need of a kidney transplant. A little history to let you know why this is a special situation.
Jenny and I went to high school together. She is 40. When she was 17, she was diagnosed with a rare disease called Wegener’s Granulomatosis. It is a rare autoimmune disorder in which blood vessels become inflamed making it hard for blood to flow. It mainly affects blood vessels in the nose, sinuses, ears, lungs and kidneys, although anything or area of the body can be involved. Wegener’s is potentially fatal over time if not caught in time or treated. There is no known cause for the disease.
Jenny was out of school her entire junior year as she was in full throws of the disease. Since then she has had “flare ups” that keep her on Prednisone near constantly. In Jenny’s case, her respiratory system has been heavily affected.
She’s had five tear duct surgeries, complete sinus surgery, three masses removed from her shoulder, right eye and right cheek, which has resulted in Bell’s palsy. Jenny also has what is called “saddle nose,” which has caused her nose to basically sink into her face. She needs two more surgeries next year in addition to a kidney transplant.
Because of Wegener’s, now Jenny’s kidneys don’t work anymore. She is on full dialysis at 40 years old. She is also one of the youngest people to have tried what’s called overnight dialysis on a portable machine at her house. Rather than visit the dialysis center for hours at a time several days a week (after working a full day, more on that later), she was able to get her dialysis at night while sleeping.
After some complications, she decided this wasn’t going to work out.
Now she attends dialysis sessions several times a week for three to four hours at a time. She takes her laptop and phone, and spends that time completing daily paperwork for her job as regional coordinator of HopeTree Family Services in Salem.
Her life has changed dramatically. Imagine working all day and then going to sit in a chair for hours at a time. Dialysis isn’t a temporary fix. It doesn’t stop until she gets a new kidney. Jenny is waiting on a donor match and is on transplant lists through UNOS, UVa, Vanderbilt and, after Jan. 1, Baptist Hospital.
Her insurance covers some of the costs, but she’ll still need to pay $25K out of pocket for the surgery. And being so young for a transplant, Jenny will see the need for three to four kidneys in her lifetime. So this surgery isn’t a one-time thing.
The thing about Jenny is that she’s given back her whole life. While most people would get very bitter if dealt her hand, she has remained positive, funny and successful. That girl does more in a day than I do in a week, and she’s usually sick when she’s doing it.
As mentioned, she works full time at HopeTree Family Services, where she started as area coordinator. Jenny has worked with people with special needs since she graduated from Radford in 1994. Not to sound cliché, but she truly does have the patience of a saint.
There is a benefit for Jenny on March 9 at Mountain View Center. There will be dinner, musicians, raffles, a silent auction and alcohol. Several of her friends and family members are in the process of getting donations for it.
My goal for her is to get her story told. I think she deserves it. The fact that she even has this rare disease is enough for a story.
To learn more about Jenny’s story, the benefit or other ways to help, you can visit her official National Kidney Foundation web page at http://tinyurl.com/cus36vf.
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