All About Me...

My name is Kerri Marks (nee O'Connor). I grew up in Levittown, NY and graduated from Island Trees High School in 1991. I am the youngest of six children.

I was diagnosed with cystic fibrosis at the age of 7 at Nassau County Medical Center. Cystic Fibrosis (CF) is a life-threatening genetic disease that affects the lungs and pancreas that has no cure. Until age 19, I was seen at the CF clinic at Schneider's Children's Hospital at LIJ in New Hyde Park, NY by Dr. Jack Gorvoy and his team.

It seems as though I was sicker throughout elementary school and junior high than in later years. I spent 7th and 8th grades on home-tutoring. By 9th grade, my school absences started to slow down and I wasn't hospitalized again until 11th grade (spring of 1990). After graduation, I briefly attended both Nassau Community College and SUNY Farmingdale. During and after my high school years, I worked in various retail settings and as a waitress. In 1993, one of my older brother's died of AIDS.

In February of 1994, I moved with my parents to Fort Mill, SC. For the next two years I bounced back and forth between GP's and basically treating myself; self-diagnosis is a fine art. We were new to the area and the closest CF clinics were hours away. I trusted that I knew my own body better than anyone else--plus my mother was a nurse. We did the best that we could.

During that time, I attended Winthrop University and met the man who would become the love of my life. My husband had joined the US Air Force on a "delayed" enlistment program. It was early Fall and we knew that he had to leave in December for Basic Training. Our courtship was brief, but we kept in touch. I flew with his family to San Antonio, TX to see him graduate. Later, I drove to Biloxi, MS and lived out of the Balmoral Inn while he was in Tech School. That May 19th (1996), he came home to Fort Mill on a weekend pass and we were married at the American Legion. Our reception lasted for 4 hours, and then I had to drive my new groom to the airport so he could make it back to base before curfew. We didn't see each other again until that September when I flew to Texas to see him graduate from his next Tech program.

In October we were given our permanent station assignment: Albuquerque, NM. While we were in NM, I attended PIMA Medical Institute and earned my RMA degree and license (Registered Medical Assistant). I wasn't pleased with the standard of care I was receiving at the base hospital, so I sought care off-base at the University of NM Hospital. It turned out that UNMH had an accredited CF care center. From that point on I was seen by Dr. James and his team.

Due to the couple of years I spent without medical care, I had a lot of catching up to do. UNMH provided me with an electric handheld percussion instrument so that I could do my own PT when home alone. They got me signed up with the CFF Services Pharmacy and started me on some "new" meds including Ultrase enzymes and ADEK vitamins, and Scandical to help me put on weight. The UNMH team were also very supportive of the idea that my husband and I wanted to try and start a family. They set us up with a genetic counselor. After a few months of educating ourselves and screening and identifying genes, we got the greenlight to try and conceive. I became pregnant within the first month of trying.

My pregnancy started out rough. I suffered from hyperemesis--throwing up all day and night for the duration of my first trimester and losing nearly 10 pounds. That may not seem like a lot to most women, but for a CF woman, that's too much (it's so hard to put the weight back on). In my 2nd trimester, I was hospitalized briefly with pneumonia. I went home with my first ever PICC line and administered IV medications at home for weeks. My O2 sats began to drop, hovering between 80-85% so I had to sleep for a number of nights with the O2 monitor attached to my finger and start using Oxygen during periods of rest and overnight.

On May 29th, 1998, our daughter was born. In the end, I had only gained 17 pounds. I was completely drained. But our daughter weighed over 7 pounds and was extremely healthy. She does not have CF, but is a carrier.

In the fall of 1999, we moved from NM back to Fort Mill, SC. I decided after having received such good care in NM, I wasn't going to settle for a GP. I got set up with a local pulmonologist, but even that took time (insurance problems, referrals, etc.). By the time I became a frequent flyer with this doctor, I realized that he still had a lot to learn about CF. He wasn't familiar with most of my treatments. A typical appointment would involve him examining me, and then me dictating to him how the prescriptions should be written out. I finally decided that it was worth the nearly 4 hour drive to be treated at a real CF clinic. It took a few months to get the pulmonologist to write up the proper referrals and such, but eventually I was able to transfer to the Medical University of South Carolina in Charleston.

There are 3 CFF sanctioned clinics in SC--one in Greenville, one in Columbia, and MUSC in Charleston. Of the 3 clinics, MUSC is the only adult CF clinic in the state, treating upwards of 85 patients and diagnosing an average of 2-3 new cases per year. I am seen by Dr. Patrick Flume and his team. I drive down every 3 months and spend the day at MUSC for clinic visits.

Unfortunately, in the last few years, I've been hospitalized many times--1/04, 3/05, 2/06, 10/07, and 1/08--for what they call "tune-ups". It's not easy, seeing as how the hospital is so far away--3 1/2 hrs, and our daughter is school-aged now. I have family who have, since our wedding, moved to the Myrtle Beach area. So they help me out as much as possible on that end, while my husband's family lives locally, and they help out on this end. Dr. Flume is sympathetic to our situation and doesn't keep me for very long (the first visit he kept me for about 12 days, in order to do as many tests as possible and have a "base line" for future comparisons). Dr. Flume usually has another PICC line inserted and I go home after about 4 or 5 days, continuing my IV meds and treatments at home for a few weeks so that I can be near my daughter.

On May 19th, 2006 we celebrated our 10 year anniversary by having another "wedding" and renewing our vows with our daughter. We had about 70 guests, lots of great food provided by family, and a karaoke DJ--it was quite a night. We even had a Star Wars 3-tier cake (laugh if you want, but consider how we spent our 9th anniversary: He and I were both interviewed by the local newspaper because we were among the most devoted SW fans in the area and we both have SW tattoos. Our anniversary fell on the release date of SW Episode III, and our photos/story/tats made the cover of the paper). My daughter and my husband are what keep me going.

Over the years I have been involved in many different types of fundraising events. When I was younger, my family would always enter the CF Bike-A-Thon on Long Island, and I won the grand prize (for most money donated/collected) quite a few years in a row. They would give a brand new 10-speed bike to the winner. After the first year, I didn't need any more bikes, so I would always trade my prize with the 2nd place winner--which was always 3rd base box-seats to a Mets game. I have been involved in Bike-A-Thons, Walk-A-Thons, Dance-A-Thons, Motorcycle "Poker Runs", and even a "Halfway to St. Paddy's Day" dinner and live music event one November.

Unlike some other states that have multiple CFF chapters, SC only has one chapter and it is located in Charleston. As a result, most of the CF fundraising endeavors take place along the coast and near the two pediatric clinics (Columbia and Greenville). Living as close as we do to the NC border, some people choose to travel up to Charlotte and participate in events there, such as the Great Strides Walk.

For the last three years, I have been the organizer/chairperson/event director for the Rock Hill GREAT STRIDES 10k Walk for CF at Cherry Park. This year also marks the 2nd Annual Sink One for CF Disc Golf Tournament presented by INNOVA Disc Golf. For more information about these events or to register, please visit my website: www.marksmanweb.com/65roses

I am in the process of completing a self-published book compiled of stories written by CF patients and their families, detailing life with CF. All of the proceeds from any books I sell directly benefit the CF Foundation.

It is my goal to make sure that every person in York County, SC knows what CF is and that we need to continue to raise awareness and fight for a cure. If you want to help, you can sponsor me in the GREAT STRIDES walk by visiting www.cff.org/great_strides/kerrimarks

If you would like to learn more about CF please visit www.cff.org