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Percy family learning to cope with cystic fibrosis
- Thread starter EnergyGal
- Start date
It is a newspaper article.
Percy family learning to cope with cystic fibrosis
by andrea hahn, the southern
Blake Ruebke, 1, grabs his brother Bradley's nose. Bradley is on the waiting list for a double lung transplant. (Pamela Kay Schmalenberger/The Southern)
PERCY - The knowledge that 15-year-old Bradley Ruebke is moving up the transplant list is bittersweet news to his parents.
It means their son is that much closer to the double lung transplant that will not only save his life but greatly enhance it. It also means that his current condition is worsening.
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"Basically, he's pushing his way to the top because the antibiotic IVs aren't working anymore and they are the strongest they have," Brenda Ruebke, his mother said.
Bradley has been on the national waiting list for almost two years. He was diagnosed with cystic fibrosis when he was 1. Had he been diagnosed earlier, his condition might be better now. That one year of not treating the disease did a lot of damage to his lungs.
Brian Ruebke, his father, explained that the severe form of cystic fibrosis Bradley has attacks his lung and his pancreas. He is not able to dislodge normally occurring mucus from his lungs. His pancreas won't allow him to process fat.
As a result, Bradley is thin and small for his age. He has to take four pills every single time he eats anything - even just a little snack. His morning routine includes half an hour on a machine that literally vibrates the debris from his lungs so he can breathe. He usually has a severe coughing fit each morning that gives him a headache. And that's on a good day.
On a bad day, he might be in the hospital getting the "therapy vest" vibration treatments almost non-stop for an entire night. By the end of it, he is sore and tired and dreading the 10-day visit that a trip to Cardinal Glennon Children's Hospital in St. Louis usually means for him.
"It's hard enough for an adult to make sense of it,' Brenda said, explaining that Bradley doesn't really like to talk about being sick. He'll give an anecdote or two during a discussion of his illness, and, if pressed, he'll say it doesn't really seem fair.
He becomes a lot more animated talking about his friends, his hunting trips and his hopes that he'll be able to get his driver's license for his next birthday. Though he is enrolled at Trico High School, Bradley is home schooled. His compromised immune system makes regular school attendance futile. Even with the help of tutor Faye Nellis, though, he is falling behind in his class work. Multiple 10-day trips to the hospital make it hard for him to keep up.
If he doesn't keep up, he may not have enough credit hours to take driver's education when he is eligible by age. His parents hope his special case will warrant special consideration. After all, it isn't through lack of effort that he is missing credit hours.
The hunting trips were launched by a local Buck Masters donation of a hunting trip. The idea was the brainchild of Jerry Nellis, Faye's husband and an avid sportsman. Bradley has half a dozen impressive mounts on the walls of the house to show that the donation of one hunt meant something to him. It isn't easy for him to get all the way to his deer stand, but once there, he evidently knows what he's doing.
"People come in here and say, 'Brian, you've got some nice looking deer. I say, no, they're Bradley's. I got the turkey," Brian said.
Even with activities like deer hunting - both bow and firearm - Brian said he can see adverse changes in Bradley's health. He used to walk across a field to get to his stand, and now he has either to take breathing breaks or go all the way to the timber on a four-wheeler.
"We notice it more than he does when we compare now with what he could do last year," Brian said.
Cystic fibrosis is hereditary. Neither Brenda nor Brian had any idea they carried a recessive gene for the disease. There was no family history on either side. They knew something was wrong with Bradley because he was small, and didn't grow at a normal rate. He coughed and wheezed a lot.
They were told it was asthma. They were told it might be allergies. An allergy specialist in Carbondale took one look at Bradley and decided to try testing for cystic fibrosis. The test was positive.
"We both didn't really know what to say," Brian said. "We really didn't know what it was."
They know now, Brenda said. And they have learned that, even though they were told at the time that the cure was "around the corner - maybe in two years" that there isn't a cure yet. There is just coping.
"That's a little bit upsetting that they still tell parents that," she said. "We were told that 14 years ago, and there is still no cure. It wouldn't do any good for Bradley anyway - the damage to his lungs is too great."
But a cure might help 17-month-old Blake, the Ruebke's younger son.
"That was a big thing for us," Brenda said. "We knew we wanted two kids. The chances of not having a child with cystic fibrosis (when two parents carry the recessive gene) is 75 percent. We saw other parents and they had multiple children and their children didn't all have it. That was real hard for me, when they told me Blake had it, too."
At this point, only his pancreas is affected. Like his brother, he takes medication with all his food. But he doesn't need breathing treatments, and runs around non-stop with a continual mischievous grin on his happy face.
Since he was diagnosed so early, doctors know what to watch for in Blake. If his lungs begin to deteriorate, treatment will begin immediately and the damage to his lungs will not be as severe as Bradley's.
The family isn't at the top of the transplant list yet. They are already planning for when they are, and how their lives will change ? first in the three months of recovery and then in Bradley's hoped-for much-brighter future.
Brenda said community members and friends have urged her to hold benefits to help defray expenses. Even though Brian can use medical leave time to be with his son during hospital stays, the leave is unpaid. Travel expenses, insurance deductibles and just life create bills that have to be paid.
Brenda said she wanted to wait until the family really needed the help - when they were close to the transplant stage. That time, she hopes, is now.
andrea.hahn@thesouthern.com
(618) 529-5454 ext. 5076
Percy family learning to cope with cystic fibrosis
by andrea hahn, the southern
Blake Ruebke, 1, grabs his brother Bradley's nose. Bradley is on the waiting list for a double lung transplant. (Pamela Kay Schmalenberger/The Southern)
PERCY - The knowledge that 15-year-old Bradley Ruebke is moving up the transplant list is bittersweet news to his parents.
It means their son is that much closer to the double lung transplant that will not only save his life but greatly enhance it. It also means that his current condition is worsening.
Advertisement
*
Advertising Info
"Basically, he's pushing his way to the top because the antibiotic IVs aren't working anymore and they are the strongest they have," Brenda Ruebke, his mother said.
Bradley has been on the national waiting list for almost two years. He was diagnosed with cystic fibrosis when he was 1. Had he been diagnosed earlier, his condition might be better now. That one year of not treating the disease did a lot of damage to his lungs.
Brian Ruebke, his father, explained that the severe form of cystic fibrosis Bradley has attacks his lung and his pancreas. He is not able to dislodge normally occurring mucus from his lungs. His pancreas won't allow him to process fat.
As a result, Bradley is thin and small for his age. He has to take four pills every single time he eats anything - even just a little snack. His morning routine includes half an hour on a machine that literally vibrates the debris from his lungs so he can breathe. He usually has a severe coughing fit each morning that gives him a headache. And that's on a good day.
On a bad day, he might be in the hospital getting the "therapy vest" vibration treatments almost non-stop for an entire night. By the end of it, he is sore and tired and dreading the 10-day visit that a trip to Cardinal Glennon Children's Hospital in St. Louis usually means for him.
"It's hard enough for an adult to make sense of it,' Brenda said, explaining that Bradley doesn't really like to talk about being sick. He'll give an anecdote or two during a discussion of his illness, and, if pressed, he'll say it doesn't really seem fair.
He becomes a lot more animated talking about his friends, his hunting trips and his hopes that he'll be able to get his driver's license for his next birthday. Though he is enrolled at Trico High School, Bradley is home schooled. His compromised immune system makes regular school attendance futile. Even with the help of tutor Faye Nellis, though, he is falling behind in his class work. Multiple 10-day trips to the hospital make it hard for him to keep up.
If he doesn't keep up, he may not have enough credit hours to take driver's education when he is eligible by age. His parents hope his special case will warrant special consideration. After all, it isn't through lack of effort that he is missing credit hours.
The hunting trips were launched by a local Buck Masters donation of a hunting trip. The idea was the brainchild of Jerry Nellis, Faye's husband and an avid sportsman. Bradley has half a dozen impressive mounts on the walls of the house to show that the donation of one hunt meant something to him. It isn't easy for him to get all the way to his deer stand, but once there, he evidently knows what he's doing.
"People come in here and say, 'Brian, you've got some nice looking deer. I say, no, they're Bradley's. I got the turkey," Brian said.
Even with activities like deer hunting - both bow and firearm - Brian said he can see adverse changes in Bradley's health. He used to walk across a field to get to his stand, and now he has either to take breathing breaks or go all the way to the timber on a four-wheeler.
"We notice it more than he does when we compare now with what he could do last year," Brian said.
Cystic fibrosis is hereditary. Neither Brenda nor Brian had any idea they carried a recessive gene for the disease. There was no family history on either side. They knew something was wrong with Bradley because he was small, and didn't grow at a normal rate. He coughed and wheezed a lot.
They were told it was asthma. They were told it might be allergies. An allergy specialist in Carbondale took one look at Bradley and decided to try testing for cystic fibrosis. The test was positive.
"We both didn't really know what to say," Brian said. "We really didn't know what it was."
They know now, Brenda said. And they have learned that, even though they were told at the time that the cure was "around the corner - maybe in two years" that there isn't a cure yet. There is just coping.
"That's a little bit upsetting that they still tell parents that," she said. "We were told that 14 years ago, and there is still no cure. It wouldn't do any good for Bradley anyway - the damage to his lungs is too great."
But a cure might help 17-month-old Blake, the Ruebke's younger son.
"That was a big thing for us," Brenda said. "We knew we wanted two kids. The chances of not having a child with cystic fibrosis (when two parents carry the recessive gene) is 75 percent. We saw other parents and they had multiple children and their children didn't all have it. That was real hard for me, when they told me Blake had it, too."
At this point, only his pancreas is affected. Like his brother, he takes medication with all his food. But he doesn't need breathing treatments, and runs around non-stop with a continual mischievous grin on his happy face.
Since he was diagnosed so early, doctors know what to watch for in Blake. If his lungs begin to deteriorate, treatment will begin immediately and the damage to his lungs will not be as severe as Bradley's.
The family isn't at the top of the transplant list yet. They are already planning for when they are, and how their lives will change ? first in the three months of recovery and then in Bradley's hoped-for much-brighter future.
Brenda said community members and friends have urged her to hold benefits to help defray expenses. Even though Brian can use medical leave time to be with his son during hospital stays, the leave is unpaid. Travel expenses, insurance deductibles and just life create bills that have to be paid.
Brenda said she wanted to wait until the family really needed the help - when they were close to the transplant stage. That time, she hopes, is now.
andrea.hahn@thesouthern.com
(618) 529-5454 ext. 5076
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>2005CFmom</b></i>
Not doing any breathing treatments...WTF....waiting until CF starts to deteriorate the lungs then will start immediately...double WTF!</end quote></div>
My guess would be it was just a poor choice of words by the person who wrote the article -- I'm thinking they meant <u>he wasn't showing any symptoms of lung problems yet,</u> so no treatment was being given -- but if anything changed they would start treatment immediately.
Not doing any breathing treatments...WTF....waiting until CF starts to deteriorate the lungs then will start immediately...double WTF!</end quote></div>
My guess would be it was just a poor choice of words by the person who wrote the article -- I'm thinking they meant <u>he wasn't showing any symptoms of lung problems yet,</u> so no treatment was being given -- but if anything changed they would start treatment immediately.
I too was concerned with not doing breathing treatments on the youngest. Does that mean no CPT either. Point of the article was about not catching the CF soon enough and hence the need for a transplant --- wouldn't you think they'd take a more proactive stance on the second child knowing what they know now instead of reactive.
And how they can't dislodge the mucus from the eldest -- just wondering what kinds of treatments they're doing on the eldest -- HS, CPT, Vest???
Article just bugged me!
And how they can't dislodge the mucus from the eldest -- just wondering what kinds of treatments they're doing on the eldest -- HS, CPT, Vest???
Article just bugged me!