Hello!
I hope you all had a wonderful weekend.
I wanted to thank those of you who have contacted us regarding the Buffalo news report about a new device that was used with a man with CF at Women and Children's Hospital in Buffalo (WCHOB).
I actually was aware of the Medivent RTX, the doctor who worked to get this technology for the man in Buffalo, Dr. Joseph Cronin, has been my doctor for years. He had contacted Dr. Pilewski regarding this device for me and once it has been approved by the FDA, it may be an option that could assist me while I await transplant. I have attached a video (at the end of the posts) that explains how the RTX works (make sure you pause or stop the music player before you watch the video so you can hear it). I currently use a VEST, which offers a percussive treatment similar to that shown in the video.
I want to congratulate Dr. Cronin and the staff at WCHOB on a job well done! He has always been so good at keeping up with all of the newest studies and technologies to assist those of us with CF and I have benefited greatly from his passion for improving the lives of his adult CF patients!
I am pasting the article below for those of you who did not get a chance to read it.
Celoron man first in the nation to benefit from new breathing device
Women and Children's Hospital highlights sophisticated new approach
By Henry L. Davis
Most people don’t think about breathing unless something goes wrong. Tyler Blake and others like him don’t have that luxury.
Born with cystic fibrosis, Blake has lungs that fill with thick, sticky mucus, making respiratory problems a constant issue and potential threat to life. Recently, a hole developed in his lung, and air began to leak into the chest cavity. He deteriorated even though doctors tried everything in their arsenal, including multiple chest tubes, surgery to remove damaged lung tissue and constant reliance on a mechanical ventilator.
But Thursday, a grateful Blake sat quietly at a news conference in Women and Children’s Hospital, as the medical staff explained the extraordinary steps they took to save him — including getting federal approval making him the first patient in the nation to benefit from a new treatment. “I wouldn’t be here if not for that device,” said the 26-year-old resident of Celoron, near Jamestown.
He was referring to a machine a few feet away about the size of a desktop computer that uses a novel technique called biphasic cuirass ventilation to help patients breathe. That’s a fancy way of saying that, unlike a typical ventilator that pushes air into the lungs through a tube, this non-invasive device fits like cushioned body armor around a patient’s chest and externally supports natural inhalation and exhalation.
Studies suggest it can be an effective alternative to or complement a breathing tube for people with respiratory failure, such as those with asthma and chronic obstructive pulmonary disease.
The technique senses and responds to a patient’s breathing efforts. For cystic fibrosis patients, who have just as hard a time breathing out as in, the device also helps bring up the phlegm that clogs their airways.
Blake was admitted to the hospital July 8 and underwent one treatment after another without making much progress. The situation began to grow desperate. “He was getting sicker and sicker, and less likely to tolerate more procedures. We felt we were nearing the end of what we could do for him,” said Dr. Joseph Cronin, director of the hospital’s adult cystic fibrosis program.
The Medivent RTX is available in Europe but awaiting approval by the Food and Drug Administration for use in the United States. Cronin, who was familiar with the technique’s results in other countries, applied to the FDA for special “compassionate use” of the device.
Medivent International in London, England, loaned Cronin and his colleagues a machine; the hospital agreed to let them try it; and the FDA gave its go-ahead for just this one patient, the only one in the United States.
With everything in place, Cronin initiated the therapy Aug. 18 in combination with a standard ventilator. “The change was dramatic within 24 hours,” he said. It allowed the staff to wean Blake off the invasive breathing tube. That, in turn, allowed Blake to eat solid foods and sleep more comfortably. Within two weeks after treatment, previously necessary medications were discontinued, and his chest tube was removed.
The device is considered an alternative or complement to standard ventilators and their complications for a number of conditions, including asthma, pneumonia and Duchenne muscular dystrophy. For cystic fibrosis patients like Blake, it also can serve as a bridge to a lung transplant. “The RTX is very versatile. It could change how to treat patients with respiratory failure,” Cronin said.
An estimated 30,000 children and adults in the United States suffer from cystic fibrosis, according to the Cystic Fibrosis Foundation. With advances in treatments, many people with the inherited disease now live into their 30s, 40s and beyond.
Medivent expects FDA approval of the device within a few weeks, officials said.
hdavis@buffnews.com
I continue to sleep A LOT, it just doesn't seem like I can get enough rest. The good news is, I am still infection free and I am going on two weeks without IVs, boy my little body is fighting for all it is worth, GO ME!
