Craig Dyer faces great challenges over the next few months. He will be travelling to Raleigh, North Carolina for testing and, he hopes, a double lung transplant. He would like to face these challenges with his wife, Karla, at his side, and the community is stepping up to help.
Dyer has a rare genetic lung disease called Alpha 1 trypsin deficiency. The disease went untreated for 42 years, until Dyer caught pneumonia and was diagnosed with emphysema. After being referred to a pulmonologist, he was diagnosed with the rare condition, which only has 3,500 registered cases in the United States, Dyer said.
After his diagnosis, Dyer began receiving IV treatments to slow the degeneration of his lungs. The drugs he receives cost $8,000 for a one-hour IV treatment, and he is receiving treatments weekly. The Dyer’s insurance through Medicaid and a supplemental AARP policy cover the costs entirely, and will also cover the medical costs in North Carolina.
One glitch, however, has arisen. The Dyers have received assistance from a private foundation, Patient Services, Inc. to pay the cost of the supplemental policy premiums. In November, Dyer received a letter notifying him that that assistance will end as of June 2015. Although they are exploring another foundation for funding, it seems likely that they will need to pick up the cost of that premium, adding another couple hundred dollars per month to an already tight budget.
In July, Dyer was told that if he didn’t receive the transplant he had no more than two years to live. Breathing tests in the last couple of weeks showed that his lung capacity has dropped from 24 percent to 18 to 19 percent. His doctor was putting in a call to Duke University, where it has been recommended he have the procedure, to request an appointment as soon as possible, Dyer said. “I anticipate correspondence from Duke University in January and we’ll go from there. It could be a slow or a fast process, we just don’t know,” he said.
Once in Raleigh, Dyer will go through required testing to see if he is strong enough to handle the transplant surgery, do intensive preparatory work, and wait for a pair of lungs to become available. The Dyers were told to anticipate being in Raleigh for at least eight months for the testing, surgery and recovery. This means setting up another household in North Carolina, a difficult challenge for the Dyers. Karla, who was run over by a car when she was five years old, is also disabled, requiring the Dyers live on a fixed Social Security income.
That’s where the community comes in. The North Windham Union Church, where the Dyers are members, has set up the Dyer Fund to assist with travel and living expenses in North Carolina. They have collected donations from the congregation, including two matching challenge donations of $1,000 each. The church has also hosted a variety of fundraising activities including thrift shop sales, and a pie and dessert sale to benefit the fund. “Our church has been wonderful,” Karla said.
In addition to the church support, the Dyers son, Matthew, set up a gofundme page, which has raised $3,115 of a $10,000 goal since its creation in mid-November. Through social media, the word spread rapidly, and donations came quickly in the beginning, but have stagnated, the Dyers said.
Matthew also connected with Comedian Bob Marley to arrange for a benefit show on January 22, 2015. The show will be at Keeley’s Banquet Center in Portland. Keeley’s donated the space for the benefit.
The Dyers have lived in Windham since 1988, and raised two children, Matthew and Lindsey. Matthew is now an active duty specialist in the US Army and Lindsey recently graduated from University of Maine as a microbiologist.
Both of the Dyers are extremely grateful for the assistance they have received. Craig said an emotional and emphatic thank you to the community for their support in this difficult time.
Karla added that she is worried, particularly if the surgery happens after June, when they will need to pay for the supplementary insurance policy. “I feel like the funding is going to stop at a certain point, and we’re not going to have enough and I will have to come back and leave him down there alone,” she said.
Though his challenges are ongoing, Dyer maintains a positive outlook. “Every day is a party and every meal is a feast,” he said. Living for the moment is important to him, he added, because tomorrow might not come.
“He is amazing,” said Karla. “He is such a positive man. It rubs off on me.”
Donations to the Dyer Fund can be sent to North Windham Union Church, UCC at 723 Roosevelt Trail, Windham, ME 04062. Tickets to the benefit show are $20, and are available at http://www.eventbrite.com/e/comedian-bob-marley-benefit-for-craig-dyers-lung-transplant-tickets-14953587583. Donations can also be made at the gofundme page, http://www.gofundme.com/hn07bs.