Rare diseases of the lungs // Drug Repurposing

Rare diseases of the lungs

Wesley Cross leans back from exertion during a recent physical therapy session at Community Medical Center with physical therapist Jared Hartley. Cross had a lung transplant nearly two years ago because of an extremely rare form of lung disease that also affects his older brother J.D., who also had a lung transplant only a few weeks ago.

The Crosses’ burden has been long and nearly bankrupted them, Daniele said. A home health aide, she hasn’t been able to work as she tends to her sons’ many needs.

Added to that, the forced relocation to Seattle to wait for a perfect transplant match and the need to stay there during the long recovery process have been an expense far beyond what Medicaid pays for.

Reimbursement for living expenses is about $25 a day – or about $750 a month – and rentals near the Seattle hospital average $1, 800 a month for a one-bedroom apartment or $2, 300 for a two-bedroom.

“Dani is the most amazing woman, ” said Angela Wagner, a University of Washington Medical Center social worker who has been working closely with the family for the past several years. “Not only has she gotten her boys this far as a parent, she is a champion and her sons’ best advocate. She is so humble about this – she has handled this whole situation with optimism, with grace, with hope and a smile on her face.

“When I think of her – and all of them – two words come to mind: resilience and strength.”

***

TOM BAUER/Missoulian

Wesley had multiple strokes after his lung transplant, which paralyzed the right side of his body and caused his brain to swell.

Up until the boys made it onto the lung transplant waiting list in 2011, they had spent roughly one week – or more – every month for 10 years at Community Medical Center getting the transfusions or steroids and other medications necessary to keep their lungs operating.

Although infections and myriad setbacks – some life-threatening – filled their world, Daniele was the force that pushed them forward.

“It’s been a rocky road, that’s for sure, ” Daniele said in a phone interview from Seattle, where she is living with J.D. until doctors release him from their care and they can return to Montana.

“I knew with the transplants we might be trading one set of problems for another, but I didn’t expect Wesley to have the strokes or be paralyzed.

“It’s like having a newborn all over again, having to help him learn to talk and walk again, ” she said. “And with James, he went into respiratory failure after Mother’s Day and was hospitalized. After being on the transplant waiting list for nearly two years, he was taken off of it for 80 days because he was so sick.”

J.D.’s health was so poor at the time, in fact, he was transferred to an acute care facility in Billings where he signed end-of-life paperwork that told doctors to let him die if a respirator was the only thing keeping him alive.

But then, in September, the prayed-for convergence happened: J.D.’s infection was gone and the hospital called to say a pair of lungs was ready for him.

Aside from the complicated lung transplant surgery, the boys have endured countless other medical procedures and been prescribed a stunningly long list of medications.

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