On February 14, 2018, our brother, Charlie Williams, was diagnosed with Idiopathic Pulmonary Fibrosis. On February 15, 2019 he received a single lung transplant.
Our family knows this disease all too well. This is the second member of our family to be diagnosed with IPF. Our brother Phil also had IPF and had a lung transplant on March 4, 2014. In 2015, about 18 months post transplant – just when he was beginning to live his life again – he was diagnosed with cancer. He passed away in September 2015.
Phil, Dennis and Charlie
IPF is a progressive disease that has no known cause and for which there is no cure. However, in our family, there is a question now as to whether there is a genetic link. The average life expectancy of someone with IPF is 3-5 years. While new medications are helping to slow down the progression, the only proven treatment is a lung transplant.
And lung transplants are expensive. As of 2017, the average cost was $861,700 for a single lung transplant. Following a transplant many things can happen including infection and rejection requiring emergency care.
We know this from experience. Life after transplant is a long, rocky road. One does not just get a new lung and begin to live a normal life. As mentioned before, it was 18 months before we all felt that Phil was free to be Phil again. And that 18 months was rough – multiple infections and trips back to the hospital. Every time a new problem – even a cold – popped up, the thought of rejection tagged along. He had excellent medical care as does Charlie but vital organ transplants come with extremely high risk.
Kyle, Charlie and Tyler
As I write this it has been a week since Charlie’s transplant. He is still heavily sedated, intubated and has just come off ECMO. A side effect of ECMO is kidney failure. And so Charlie is now on dialysis. He has some edema and yesterday went for a chest CT. We are still waiting on the results. Another challenge for our family is how spread out we are. Charlie and his wife live about an hour and a half from the hospital where he is, his kids live further than that. My brother Dennis and I are in different states. And Dennis has his own health struggles. To say this is a challenging time for all of us is truly an understatement.
Charlie and Kerry
So we ask for prayer from everyone who reads this. I know that those that read this don’t know us personally, but I am hoping that this story sparks something in you. Maybe there is a similar situation in your family. If so, every time you think of that, maybe give a thought to Charlie or a member of our family, and send some love our way. We have proven over the years that positive, peaceful thoughts and prayers make a tremendous difference in recovery.
Below are some links to learn more about Pulmonary Fibrosis and a link where we are raising funds to help offset medical costs as well as fund research so other families don’t have to go through this.
Thank you for taking the time to read this and thank you for your prayers. They matter.
Diane and Dennis on behalf of Charlie, Kerry, Kyle and Tyler
For more information: