Fall 2002 ~ Newsletter
Hope: A National Perspective
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Patient and Parent Perspectives
Overcoming Obstacles with Hope
by Paul Drury, Executive Director of the Cystic Fibrosis Foundation, Connecticut Chapter
Working while having CF obviously has its obstacles. First of all, you have to be able to do the tasks assigned. I always looked at it from the employer's point of view as well. If I was going to be out sick every other day, it wasn't fair to him either. After all, it is a business and he needs employees there. I always thought that telling employers I had Cystic Fibrosis would be held against me, but it was quite the opposite. They were more "worried" about my health than the business. I did become to sick to work before my double lung transplant, and was able to go on Medicare and Medicaid as my father passed away. This made it easier for me, insurance wise, for my transplant.
While I still have CF, my lungs have been great. I began work full time for the CF Foundation about 18 months after my transplant, and have had no problems working full time. I still hear stories of people with CF "losing" their jobs because of frequent hospitalizations, but that is quite rare. My first interview after my transplant, I was reluctant to tell them about my transplant because I thought that they thought that I would be sick all the time. When I decided that I didn't want the job, I told them about my transplant. They called me back and raised their offer! I still decline, because I knew I could make a difference with the CFF.
I am now reaching milestones I never thought about. I am engaged, I got my first gray hair (coincidence?), and I'll be 36 at the end of May. I will be celebrating my seven year anniversary of my transplant as well. And, I anticipate a long career with the CFF.
Life is Precious! - thoughts from a lawyer with CF
by Beth Sufian, J.D.
I just celebrated my 37th birthday and spent some time reflecting on my life with Cystic Fibrosis. Having CF has certainly been a challenge. While at times things have been rough in the grand scheme of things, I think that CF has enriched my life. Cystic Fibrosis has led me to some incredible friends and experiences. Cystic Fibrosis has also taught me to live each day to the fullest.
While it seems I never have enough time to do everything I was to do, having cystic fibrosis makes me focus on spending my time serving others and making every minute count. I practice law and focus my practice representing people with CF and their families across the country. You can contact me if needed at (713) 224-1166.
The people with CF that I have met through my work have greatly enriched my life. I am encouraged by the hard work of the CF Foundation, medical researchers, and CF care teams across the country. I am grateful for all the efforts to try and make the days of those with CF longer and fuller. I adopted my daughter from China 9 months ago and she has brought great joy to my life. I am hopeful that with new medical advances on the horizon that I will be able to experience many wonderful days with my daughter and those that I love.
Hope Calls for Perspective and Focus
by Marilyn Lott
Hope is a vital part of dealing with Cystic Fibrosis. Setting goals and appreciating milestones in your life are good ways to stay encouraged. When you do get discouraged, you shouldn't give up home, but there are times when you must change the focus of your hope. For years, I hoped for a cure for CF would be found before my son, Alan, got sick enough to need a lung transplant. Then, in September 2000, two days before he turned 11 years old, he had the transplant. At first it was difficult to cope with listing him for transplant. I came to the point of acceptance when I changed my focus of hope from a cure (in time for Alan's lungs) to a successful transplant and recovery. Alan is doing fairly well, but he can't run or walk very far, so he has had to shift his focus of hope away from playing sports, and get excited about his other interests. It's important to be thankful for what you have and never give up hope for a rewarding life.
Alan was in my prayers before he was born. Although I had no reason to think eh would be born with a disease, many times I prayed, "Please let our baby have a long life, happy and healthy, with a wife and children who live him." One night as I was praying for him, I suddenly realized that what really mattered most was eternity. Overcome with emotion I prayed, "Lord, whatever has to happen throughout his life, I pray that someday my son will spend eternity with You." Alan gave his life to God, so my greatest hope for him has already been fulfilled. When you place your trust and faith in God, you have joy, peace, and hope that will never fade away or disappoint. One of Alan's favorite bible verses is Jeremiah 29:11 that says, "I know the plans I have for you," says the Lord, "plans for good and not for harm, to give you a future and a hope."