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Cystic Fibrosis - Psychology, Special Needs, Health - Posted: 26th Feb, 2017 - 12:25pm
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Fibrosis Cystic
QUOTE With new lungs, cystic fibrosis sufferer looks forward to hikes
CHAPMAN: Palmer resident underwent transplant in Seattle.
By MELODIE WRIGHT
(09/30/08 00:01:23)
A young man whose medical condition spurred the state this summer to reverse its Medicaid funding policy on adult transplants has taken the first deep breath of his life.
Palmer resident Troy Chapman, 24, who has cystic fibrosis, is reveling in his new set of lungs after a near-fatal infection and subsequent double-lung transplant last week at the University of Washington Medical Center in Seattle.
Troy was born with the disease that's shared by 30,000 people in the United States. It affects the lungs and digestive system with thick mucus that clogs the lungs, leading to infections. The mucus also prevents the pancreas from sending natural enzymes to the stomach to aid digestion.
Until he graduated from high school, Troy and his doctors kept the disease in check. But he hit the wall health-wise at 19. Until a few years ago, he did not qualify for the transplant list because his health was not critical enough. Before the regulation change, only children were eligible for transplants under state regulations. Adult cystic fibrosis transplant patients on Medicaid needed to move to one of the 35 states with a government medical plan that covers the surgery for its residents.
But Troy's situation -- and the work of Anchorage Rep. Les Gara and his aide, Maeve McCoy, who heard about Troy's plight from Anchorage resident, Laurel Pfanmiller-Azegami -- spurred an emergency regulation change last summer that opened transplants to adults on Medicaid.
According to Cindy Christensen, operations manager for health care services at the Department for Health and Social Services, the department believes the amendment will cost about $750,000 per transplant patient.
A change to the regulation probably wouldn't cost the state any more money than it's paying now, said Dr. Dion Roberts, Alaska's only pediatric pulmonologist and Troy's doctor. Frequent hospital stays by cystic fibrosis patients already cost a lot of money.
"When I look at the number of days Troy has been hospitalized this year, and do the calculations, I figure it would've paid for probably (Two) transplants," Roberts said.
OTHERS COULD BENEFIT
The regulation change will affect dozens of people with chronic illnesses -- those with heart and kidney problems, including cystic fibrosis sufferers who live in Alaska, many of whom are approaching or are over age 21.
Roberts estimated he treats about 55 cystic fibrosis patients. He said about half of them are adults. The life expectancy has grown rapidly in the past decade. Today, it's 36.8 years. Roberts said the experts aren't really sure why it's increased so rapidly -- could be better nutrition, better drugs, better medical practice.
Except for Troy, none of them are on the transplant list. Those who face the transplant decision can rest a little easier with the knowledge they don't have to leave Alaska permanently to get the care they need.
Troy's father, John, said that Troy should've been in Seattle awaiting transplant a year ago, but he wasn't eligible to be on the transplant list due to his inability to pay.
Troy and his mother, Autumn, moved to Seattle last summer so Troy could become a resident of Washington state, which allows transplants for adult Medicaid recipients.
The move was in the nick of time. Back-to-back infections kept Troy in the hospital, where he went into respiratory failure just as a set of lungs became available, John Chapman said.
DREAMS OF BEING ACTIVE
The surgeon who did the transplant told the Chapmans that their son had the "heaviest pair of lungs he'd ever pulled out of a patient," John Chapman said. "When he got his lungs he probably had less than 15 hours of ventilator time left before he passed away."
Troy doesn't remember any of that. He said it took his family several hours to convince him when he woke last weekend that he actually had a new set of lungs. And it's been a heady experience so far. His brain was so jazzed from all the oxygen that hospital staff gave him a sleeping pill because he couldn't sleep.
He's revisiting dreams punctured by bad lungs, dreams that now, despite the life-long regime of medications all transplant patients face, appear to be a mere fingertip length away.
"I want to go back to school and do a little more camping, get active again, go hunting and fishing," Troy said, his voice clear and breathy like a kid trying out a new bike. "And hiking, just all around. I definitely want to go up Lazy and maybe even Pioneer Peak. ...I'll start with the easier trail and see where it goes from there
CHAPMAN: Palmer resident underwent transplant in Seattle.
By MELODIE WRIGHT
(09/30/08 00:01:23)
A young man whose medical condition spurred the state this summer to reverse its Medicaid funding policy on adult transplants has taken the first deep breath of his life.
Palmer resident Troy Chapman, 24, who has cystic fibrosis, is reveling in his new set of lungs after a near-fatal infection and subsequent double-lung transplant last week at the University of Washington Medical Center in Seattle.
Troy was born with the disease that's shared by 30,000 people in the United States. It affects the lungs and digestive system with thick mucus that clogs the lungs, leading to infections. The mucus also prevents the pancreas from sending natural enzymes to the stomach to aid digestion.
Until he graduated from high school, Troy and his doctors kept the disease in check. But he hit the wall health-wise at 19. Until a few years ago, he did not qualify for the transplant list because his health was not critical enough. Before the regulation change, only children were eligible for transplants under state regulations. Adult cystic fibrosis transplant patients on Medicaid needed to move to one of the 35 states with a government medical plan that covers the surgery for its residents.
But Troy's situation -- and the work of Anchorage Rep. Les Gara and his aide, Maeve McCoy, who heard about Troy's plight from Anchorage resident, Laurel Pfanmiller-Azegami -- spurred an emergency regulation change last summer that opened transplants to adults on Medicaid.
According to Cindy Christensen, operations manager for health care services at the Department for Health and Social Services, the department believes the amendment will cost about $750,000 per transplant patient.
A change to the regulation probably wouldn't cost the state any more money than it's paying now, said Dr. Dion Roberts, Alaska's only pediatric pulmonologist and Troy's doctor. Frequent hospital stays by cystic fibrosis patients already cost a lot of money.
"When I look at the number of days Troy has been hospitalized this year, and do the calculations, I figure it would've paid for probably (Two) transplants," Roberts said.
OTHERS COULD BENEFIT
The regulation change will affect dozens of people with chronic illnesses -- those with heart and kidney problems, including cystic fibrosis sufferers who live in Alaska, many of whom are approaching or are over age 21.
Roberts estimated he treats about 55 cystic fibrosis patients. He said about half of them are adults. The life expectancy has grown rapidly in the past decade. Today, it's 36.8 years. Roberts said the experts aren't really sure why it's increased so rapidly -- could be better nutrition, better drugs, better medical practice.
Except for Troy, none of them are on the transplant list. Those who face the transplant decision can rest a little easier with the knowledge they don't have to leave Alaska permanently to get the care they need.
Troy's father, John, said that Troy should've been in Seattle awaiting transplant a year ago, but he wasn't eligible to be on the transplant list due to his inability to pay.
Troy and his mother, Autumn, moved to Seattle last summer so Troy could become a resident of Washington state, which allows transplants for adult Medicaid recipients.
The move was in the nick of time. Back-to-back infections kept Troy in the hospital, where he went into respiratory failure just as a set of lungs became available, John Chapman said.
DREAMS OF BEING ACTIVE
The surgeon who did the transplant told the Chapmans that their son had the "heaviest pair of lungs he'd ever pulled out of a patient," John Chapman said. "When he got his lungs he probably had less than 15 hours of ventilator time left before he passed away."
Troy doesn't remember any of that. He said it took his family several hours to convince him when he woke last weekend that he actually had a new set of lungs. And it's been a heady experience so far. His brain was so jazzed from all the oxygen that hospital staff gave him a sleeping pill because he couldn't sleep.
He's revisiting dreams punctured by bad lungs, dreams that now, despite the life-long regime of medications all transplant patients face, appear to be a mere fingertip length away.
"I want to go back to school and do a little more camping, get active again, go hunting and fishing," Troy said, his voice clear and breathy like a kid trying out a new bike. "And hiking, just all around. I definitely want to go up Lazy and maybe even Pioneer Peak. ...I'll start with the easier trail and see where it goes from there
This is so awesome. Troy is one of my daughter's best friends. He has spent a good share of his life in the hospital. I knew he was going down for the transplant but this is the best news. I am so glad it was a success.
No doubt he is going to get his life back. Though Pioneer Peak is quite a goal,
Cystic Fibrosis Health & Special Psychology
Yes! I am so excited for Troy. We have been following him closely as our community just did a fundraiser at our annual Potato Bowl and earned almost $3000 for his needs. His brother plays on the Palmer High School team and it is neat to see a community give like that. I pray more communities will find ways to make more research available and many more can benefit. Our little town has had many health-related miracles in the past few months. We have been blessed.
Fibrosis Cystic
I remember as a kid I knew a younger girl who had Cystic Fibrosis. She had to do breathing treatments in a machine at least once a day. I remember asking my mom what was wrong with the girl and my mom told me a little about the disorder. I remember my mom telling me that most people with Cystic Fibrosis don't live through adulthood. I hope in the future there are more ways to treat or even cure Cystic Fibrosis and other illnesses.
Post Date: 26th Jul, 2014 - 11:03am / Post ID: #
NOTE: News [?]
Cystic Fibrosis
87% of Babies With Cystic Fibrosis are Aborted, But We Could Never Kill This Bundle of Joy
A medical exam room is where most parents are presented with 'their options" regarding life. It's where they are overwhelmed with the unpleasant diagnoses that their unborn child has a life threatening genetic disorder. And, it's where they are first presented with the challenges and trials that will mark their child's entire time on earth.
But, it's also where God's blessings are revealed. Ref. Source 9
Post Date: 26th Feb, 2017 - 12:25pm / Post ID: #
NOTE: News [?]
Cystic Fibrosis Psychology Special & Health
Antibiotics used to treat cystic fibrosis increases risk of permanent hearing loss
A powerful class of antibiotics provides life-saving relief for people with cystic fibrosis; however, a new study for the first time reveals the levels at which high cumulative dosages over time significantly increases the risk of permanent hearing loss in these patients. The study suggests physicians who treat patients with cystic fibrosis may be able to consider alternative strategies for treating the symptoms of respiratory infections associated with CF. Ref. Source 5x.
TOPIC: Cystic Fibrosis