Let’s start with Elizabeth. Elizabeth is my older sister. She is 27 and she lives in New Sharon, IA with her husband, Matt, and their son, Landen, who will be 3 in January. Elizabeth was diagnosed with Cystic Fibrosis when she was 11. Elizabeth is a graduate of Guthrie Center High School and studied massage therapy at Indian Hills Community College. She is a licensed massage therapist and has her own business. Elizabeth just recently closed her business because she is no longer able to meet the physical needs of the job.
Growing up, she had a very mild case of CF, but her health has rapidly been declining for the past year and a half. Her lung function is currently at .4L (normal for her is 2.5-3.5L, normal for non CF patients is 6L) which is a level that her previous medical treatments can no longer effectively treat. Her doctors have determined that a double lung transplant is the best course of action moving forward.
What is Cystic Fibrosis?
Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, a defective gene causes a thick, sticky buildup of mucus in the lungs, pancreas, and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage, and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients. Breakthrough treatments have added years to the lives of people with cystic fibrosis. Today the median predicted survival age is close to 40. While there has been significant progress in treating this disease, there is still no cure.
Elizabeth has had several hospital stays over the past couple of years and recently her hospital stays have become more frequent (5
already in 2017). She was placed on oxygen full time in June. The current average waiting period for a CF lung transplant at her hospital is 79 days from the date of placement on the transplant list. Once Elizabeth receives her transplant, she has to have a family support person with her 24/7 for 3 months to help her with all activities and to manage the strict medicine schedule required for post-transplant. She will remain in the hospital for 2 weeks following the transplant and then has to live in the same town as the hospital for the first month following her surgery. She will require daily doctor visits, pulmonary rehab, and testing for the first month. This means her and her full-time support person will not be living at home because her home is in a different town than the hospital. They will be staying in an extended-stay hotel or a rental house. The next 2 months following transplant, she will return home but will be required to travel back to the hospital (145 miles round trip) weekly for doctor visits and testing. She will also be required to attend daily pulmonary rehab at the closest facility, which is 50 miles round trip.
We appreciate any assistance you are able or willing to provide towards these expenses to ease the financial burden that this transplant recovery will place on the family.
We are so very fortunate to have this lung transplant option to improve Elizabeth’s quality of life and extend her life for the better. However, we know that it will be a long, hard journey that will be made easier with your help and support.
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