June 28 2009

Laura Tillman

I was diagnosed with Cystic Fibrosis in 1995, at the age of 47 after years of suffering from chronic sinus infections, a chronic cough, pseudomonas infections, and sundry other symptoms.  I am currently 61 years old and have been married to Lew for 33+ years.  I took early retirement in 2000, from my position as a  certified school psychologist, due to constant infections acquired from working with infants, toddlers, pre-schoolers, and autistic children.  Since then, I have been involved in volunteer activities for various CF organizations, both state and national.  I currently serve on the Board of Directors of a state organization as well as USACFA, where I am also Secretary. I volunteer with the Medical School at the University of Michigan for its Family Centered Experience, providing first and second year medical students with the opportunity to learn what it’s like to live with a chronic disease.  I am also a member of the Patient-Family Advisory Committee for the CF Center at the University of Michigan.  Additionally, I volunteer at my local library and with the Michigan Humane Society.

Initially, after diagnosis, I was completely compliant with all the recommended treatments while still working full-time.  However, finding the time to get adequate sleep and exercise was next to impossible.  Despite my compliance with treatments, I was on IV antibiotics an average of every 12 weeks.  After 5 years of declining health, I decided to take early retirement, which was the best decision I could have made as far as my health was concerned.  I was, and still am, able to sleep as many hours as my body requires, to exercise frequently, to rest during the day if not feeling well, and to avoid people who are ill; these were never options while I was working.

During my years of retirement, I began phasing out some of my treatment regimen, as the above routine seems to keep me healthy.  However, I’m vigilant when it comes to hand-washing (or using Purell, whichever the case may be), and am willing to increase treatments if the need arises.  I keep informed by seeking out and reading the latest research on CF.  I also maintain a positive attitude and a sense of humor.  I feel that these factors - volunteerism, attitude, and humor - as well as the support of my husband, are as important as the medicines and treatments that I will continue to receive throughout the remainder of my life.  My husband and doctor might take exception to this and add that my stubbornness and feistiness also keep me going.  While this works for me at this point in my life, I don’t recommend that others do the same.  What works for one person doesn’t necessarily work for another.

Although I’m pretty insistent in determining the terms of my care, I will do whatever I consider reasonable in order to achieve my goal of living a very long and fulfilling life. So, if medications and treatments need to be increased in the future, I won’t argue.  I know that CF is a monster that can turn quickly and rear its ugly head.  That’s why it’s good to be prepared with knowledge, a great doctor, and flexibility in one’s attitude.  The key to maintaining one’s health status is to be as knowledgeable about your own body as well as to be a very informed medical consumer.