As some of you know, my husband died of cystic fibrosis last June, 3 days before his 40th birthday. His younger sister died at the age of 18 from the same disease.
Shortly after he died, I found out why he had always said, "I've done my part for CF" and why he refused to help me with fundraising efforts. Joe and his sister were poster children when they were little. The CF Foundation required their parents to drive all over the state and never offered gas or lodging assistance. They also promised his six year old sister a pony that she never received.
After his death, I wrote to them asking if they would place a memorial or article about Joe on their web page. They responded that they would not and that they only highlighted living patients, yet there was a memorial for another patient who had passed away recently on their site at that time.
The last few months of Joe's life were a nightmare. A respiratory therapist at CF Solutions in Tulsa, expected Joe in his deteriorating condition to make a 90 minute drive early in the morning through Tulsa traffic and be on time for his pulmonary rehab program. He was quite proud of his program, having worked with about five patients who did better for a while. He had no empathy for the panic attacks that prevented Joe from getting out of bed, let alone out the door. On our last visit, he got in Joe's face and yelled at him disrespectfully, telling him that he was "not going to ruin my results by being late." I actually was so upset that I had made notes of the conversation, but we went to the hospital that day and Joe never came home. A nurse there had offered Joe gas money but the director denied the request because Joe refused to use transportation offered through Medicaid due to his panic attacks although I had called them and confirmed that they would not assist him in getting into the car or into the building, to my own shock and surprise. A psychiatrist that they tried to provide was always too busy running off to her paying clients to spend much time with Joe. The woman literally watched the clock during any time she did spend with him. The Transplant Center in Oklahoma City treated him even worse and may have accelerated his death. I believe that Joe was treated so badly because we did not have the money for the transplant and we would have to depend on fundraisers and donations.
This is the first time I am sharing this. It has had a major impact on my grief and I have been unable to address it. The lack of compassion and care shown by these people is sickening. Joe really loved everyone at CF Solutions and was very hurt to be treated that way at the end of his life. When I called CF Solutions to get the Director and Board President's names to address a letter to, they refused to provide this information.
Nonetheless, to the best of my knowledge, the CF Foundation is the only agency that raises money for research. The Great Strides Walk is their annual fund raiser.
CF is a genetic mutation of the lungs that causes them to produce a thick mucus that does not move. Over time, it weakens the lungs and affects all of the body's systems. Most patients develop diabetes and a special type of arthritis as well as other problems. Living with CF can be compared to living with a very bad case of pneumonia or bronchitis every day of your life, unable to breathe or engage in normal activity.
There is no cure. People are living longer and better lives but many still die in infancy. Most don't live past age 35 and many live in pain and isolation. Lung transplants only offer about 5 years of life. The maintenance required makes diabetes and other conditions worse. Some states now have mandatory genetic screening as part of the marriage license process. Both parents must have the gene. If CF has skipped a few generations or if it was misdiagnosed, some people may not even be aware of CF in their family history. Support services for families of CF patients are sadly lacking, especially in my area. Breathing medications alone cost over $1,000 per month. Patients visit the hospital about four times per year routinely, not counting extra infections and illnesses. These hospital stays average around $150,000. Many parents of CF children must travel extensively for doctors' appointments and hospital stays and are often financially strapped on top of the emotional strain of caring for a terminally ill child. Some families have more than one child with CF.
Patients with CF are wonderful, strong people and deserve a cure. They also deserve to be treated with dignity and respect regardless of their financial status. If you would like to help, you can contribute by sponsoring a walker in your area or through this link: Cystic Fibrosis Foundation
Thanks so much for listening. Joe has been gone for almost a year and I have needed to get this off my chest for a long time. It disturbs me deeply that other patients may be facing the same obstacles.