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A Story

I love hearing about other people's stories. Everyone is so unique, and we can all learn from each other! I especially enjoy hearing about other CF patients. Because CF is such an isolating disease, I really don't know very many people with CF. The CF Roundtable, an online newsletter for adult CF patients and their families, encourages CFers to send in their stories or their articles for the newsletter. Below is a story from a fellow CFer named Anne Willliman. Her article was published in the most recent newsletter. I enjoyed reading her story and seeing how different it is compared to mine. No two CFers are alike! Here's her story:

Last spring, I reached a huge milestone for me – I hit 60 years old. Yeah, I know that’s still young – or at least middle-aged for most. But when you have cystic fibrosis, hitting that age is pretty amazing. For all you young things out there, let me introduce you to the world of a Senior Cystic (thanks to Julie Desch for the term!). During my first few years of life, back in the dark ages, my parents knew something was wrong. My lungs were fine, but I just didn’t grow. The doctors they took me to thought it was allergies or some other stomach ailment. Finally when I was five and we were living in Indianapolis, someone had the bright idea to test me for CF. Sweat tests were a little different back then. I was stuck in a plastic bag from the neck down and lay there for hours, letting the sweat collect. I remember my mother reading The Little House on the Prairie to me as we waited. After the required number of hours, the nurse told my mother I could get dressed and go. Unfortunately, it was a cold day. Mom questioned the wisdom of sending a sweaty child out into the weather, but the nurse assured her it was okay. So off we went. Next thing I knew, I had pneumonia and was back at the hospital, this time as a patient. Mom was always convinced that sending me out in the cold without giving my body time to cool off was to blame.

There was an oxygen tent draped over the head of my bed, and I remember cramming my entire body into it when they came to give me a shot. I got over the pneumonia, but the sweat test resulted in a diagnosis that wasn’t going to change. I had CF. At that time, the doctor could tell my parents only that I wouldn’t live to reach the age of 10. He gave them digestive enzymes for me and told them to try to give me a happy, though short, life. Of course, my parents were devastated. But they were people of faith and weren’t willing to give up. Shortly afterwards, we moved to Columbus, Ohio,
and they heard about a doctor in Cleveland who was trying different things with CF patients. Many of their new friends in the CF parent support group weren’t interested. (All of their
children later died from the disease.) But Mom and Dad drove the two hours to see Dr. LeRoy Matthews at the Rainbow Babies and Children’s Hospital. I liked him – he was a kindly,
soft-spoken man who seemed to really care about me. But suddenly I was living a different life that included postural drainage, where my lungs were pounded by hand several times a day while I lay head down on a tilted table. I had to sleep in a mist tent at night, which covered the top of my bed and left me with wet hair every morning. And of course there
were all the pills, nebs and trips to see the doctor every six weeks. 

I had a rough year for first grade. I missed two-thirds of the days of school due to illness, and there was talk of making me repeat the grade. But Mom worked with me at home and I was able to go on to second grade. The years passed and my life was pretty normal, in spite of all the CF treatment I received. I was starting to have issues with my lungs but nothing bad enough to be hospitalized. There were birthday parties, proms, a driver’s license and, finally, graduation. I decided to attend a
private college several hours from home, which meant I would shoulder the whole burden of CF. But I was ready for that. We found a student at my college who was studying to be a physical therapist and hired her to do my postural drainage each day. Amazingly, she was from Cleveland and was able to go to the hospital there to get trained how to do it. We moved the tilt table into the dorm basement
and met every day. I brought my mist tent, too, and every few days had to clean the equipment that produced the mist. That meant washing it all and running white vinegar through it. My roommate couldn’t stand the strong vinegar odor and insisted that I stick the hose that was pouring white steam out of the window. I wonder what people driving by the dorm thought when they saw the steam?

College life was great and the best part was meeting Jon. We decided to get married the summer after my junior year. The night before our engagement party, my mother took Jon aside and spelled out the realities of CF. “You will not have a long marriage,” she told him. But Jon was ready to go ahead
anyway. The wedding took place and I started my senior year of college.

Sometime that spring, I was suddenly struck with the understanding that I had a fatal disease and would not live to see middle age. It greatly troubled me, but after thinking and praying a
lot about it, I was able to accept that my life was in God’s hands and He would keep me until it was my time to go. Little did I know that 40 years later, I would still be here! After a few years, Jon and I decided we were ready for children. Back then, I was told a pregnancy would be
very bad for me and we went with adoption. We were placed with a sweet little baby girl whom we named Amy. She was perfect. When she was about three, the day finally came when I had to be
admitted to the hospital for two weeks for a clean-out. I was 29 and it was my first time. I was two hours from home and had never been away from Amy for overnight. It was horrible. Back in the day, CF was a children’s disease. So I was in a children’s hospital, even at my age. As Jon, Amy
and I walked out upon my discharge, the receptionist smiled sweetly at us. “I bet you’re glad to be taking your little girl home,” she gushed. Jon and I glanced at each other. Then we smiled at her and kept walking. She didn’t need to know that I had been the patient.

At some point, it was determined that the mist tent was not helpful and I no longer had to put up with it. (Jon was delighted!) But we still did the postural drainage every night. Amy had watched from her baby swing at first. Later, she came over to us as Jon pounded away, cupped her little hands
and “pounded” my chest too. The years passed. We adopted two more babies, both boys, and life went on in a blur of laundry, sports, school, ballet lessons and church. I worked part-time as a freelance writer, selling more than 700 magazine articles and three books. We traveled to many states as well as took trips to countries such as Brazil, England and Israel. And yes, there was always CF.

As I aged, there were complications: GERD, osteoporosis, CF-related diabetes and lowering lung function. That meant more hospital stays (finally in an adult hospital), more drugs,
more treatments. It affected the kids, too. More than once, they asked Jon, “Is Mom dying?” But somehow, I always pulled through.

So that takes me up to now. My children are all grown, married and with kids of their own. Things have come full circle – the other day my two-year-old grandson watched Grandpa pounding on Grandma and cupped his little hands and “pounded” on me too. (Yes, I have a Vest, but I like
the postural drainage better.) Though I have lost a lot of lung function and strength, I am still here. The future of CF looks brighter than it ever has, although I do remember my mother telling me when I was a teen that we were on the edge of a breakthrough
for CF back then. Now, it appears that’s really happening. I do believe that younger people with CF have every reason in the world to think they will live to reach 60 and beyond. If I can do it, it's possible!

For more information about CF Roundtable, go to www.cfroundtable.com

Comments

  1. This story is so encouraging Emily. I never really knew that much about CF but I'm so glad for you & many others that there is constant research & breakthroughs. You are amazing : )

    ReplyDelete

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