Some times as parents we do the impossible for our kids. When we think that all hope is gone… well, our life had a 360 [degree] turn. As parents of three children (one girl and two boys), life hasn’t been easy for us. Our two boys have been diagnosed with Spinal Muscular Atrophy .Even though they are nine years apart we never stop for anything. Well let me tell you a small story that most people won’t believe until they hear it or see it. Our son, Marco, was diagnosed at age 18months and had four months to live. Years have pass and now he is thirteen years old. Life hasn’t been easy for him. Marco would also have a hard time breathing, tiring easily. He was underweight because he didn’t have the strength to eat or do much, even though he’s wheelchair-bound. Winters were very hard always with pneumonia and RSV. One day when he had an appointment with his Pulmonologist (Dr. Dove) in San Antonio, Texas, she told us about the Biphasic Cuirass Ventilator. The more she would explain in my mind was the word (HOPE). She asked if we were interested and it was a big “YES!” We got to meet with Denise Fernandez, a Hayek Rep. As she explained to us the functions and purpose of the medical equipment, our eyes and ears got amazed. It finally got the time for our son to try it. Guess what! After two hours of test using it and the shell was removed we notice he had more strength. He didn’t struggle to breath as much and was able to bring phlegm on his own. This was my son’s BIG BREAK in life. Finally after insurance approval we received one. Now let me tell you one thing: when we got the Cuirass, Marco was hospitalized and almost ended with a Ventilator. As soon it was put to work, Marco started to get out of his crises faster than ever. It was from one day to the next. You may think it’s just another medical equipment, but it is not. Children with SMA have a weak cough and fatiguing is very easy for them. Lung function is very weak. For the past two years, my son has only been hospitalized once thanks to the Cuirass. He’s able to last longer without getting tired and has more energy than ever and sleeps well at night. Most of all, he’s home and not at a hospital every other month. Thank you so much for introducing my family to the Cuirass, Dr. Amanda Dove and Denise Fernandez (Hayek Rep). This Cuirass has taken over the other equipment he has used and has never done the function it does on its own.
Thank You from,
My daughter is 8 years old with Spinal Muscular Atrophy. While using the BCV it has helped her in numerous ways. My daughter’s muscles start to fatigue in the afternoons since using the BCV she is able to raise her arms in the afternoon! Almost five years ago my daughter was in the hospital with pneumonia; during that time we were discharged with a Trilogy Ventilator. The Trilogy machine was not effective for her; she had to wear a mask on her face while making her nose blister. Furthermore the Trilogy did not rest her muscles like the BCV does. It wasn’t until my daughter’s pulmonary doctor recommend we try the BCV, what a great recommendation! I truly believe using the BCV has made a huge difference in my child’s health care needs.
I would like to share my story about the Cuirass: My son Scott Hosfeld is 8 years old and has cystic fibrosis he was brought to the hospital on Sept 17th with trouble breathing by sept 18th he was in critical condition with very high levels of carbon oxide in his body and they had put him on the bipap and talked about a breathing tube. Which was not helping at all so my Dr went home and did lots of research on how to help him she came across the Cuirass so the next am she called Gary from the Hayek Medical company and explained our situation and he agreed to fly to Florida to teach everyone how to use it and be hands on with my son to tell him how it works and start him on it….as of the next day we started showing a major difference in his xrays and his co levels. This machine (turtle shell) was a life saver for our son he has now been using this machine for 6 weeks throughout the night and for his airway clearance every 3 hours . We will use this machine to keep him healthy enough till he gets his lung transplant and then probably after. I want to thank this company and especially Gary for helping our family u really have made a difference for my son. Also Gary has always been a phone call away when we have questions.
Heather Sharpe Hosfeld
My experience with BCV has been quite extraordinary. I have severe restricted lung disease and had a tracheostomy for 6 years prior to BCV. While the tracheostomy was wonderful in keeping me alive the amount of health problems it caused were quite substantial. I was constantly dealing with infections and large amounts of mucus, two issues I hadn’t dealt with prior to the trach. The worst was getting constant pneumothoraces from the positive pressure and having to be hospitalized for long periods.
These problems greatly changed once I got the BVC. I no longer had pneumothoraces and with the aid of the vibration mode my mucus production has been kept to a minimum. It has also greatly helped with dealing with yearly colds and flus by making it less stressful on my body.
The various modes, such as the vibration mode, and the ability to manipulate the breathing ratio are two of the most significant changes In dealing with my mucus problems. One of the most stressful and, at times, terrifying sides to dealing with breathing problems is the amount of mucus that one can get stuck in the lungs. Prior to BVC I used a simple vibrating vest to help break up the mucus. While the vest was great at helping break mucus down, one of the major drawbacks to its design is that it doesn’t help expand your lungs during the treatment. On the contrary, the vest actual puts pressure on your entire torso as if someone is giving you a large hug. This added restriction makes the process of coughing mucus up significantly more stressful and tiresome. The opposite, however, could be said about the vibration mode of the BVC. With the BVC’s negative pressure, the air pressures actually expand your chest and diaphragm and add a noticeable relief and assistance when you’re trying to cough mucus up. Overall I can’t say enough good things about the machine. It has truly been a game changer in my life and is a tool others should use to make their lives easier.
It was October 2009 when I received my Hayek RTX machine. I believe I may have been one of the first individuals on the West Coast to receive this wonder machine. Perfect timing as my cystic fibrosis (CF) was becoming difficult to manage along with holding down a full-time job.
The magic of the RTX vest is in the customizable positive pressure settings. The positive pressure increases the amount of mucus I am able to expel, unclogging my airways, with significantly less effort than other machines I have tried and easier and less time consuming than active breathing techniques. Given I’m usually pretty tired after a long day of work, less effort is critical.
I also tend to get dizzy on some of the more violent machines that are available for CF patients, however, with the customizable settings on the RTX, I’m always able to find a setting that feels comfortable and gets results.
Finally, in my opinion, the Hayek RTX allows me to recover faster from a mild cold or from an antibiotic related hospital visit. It’s been almost five years since I started on the RTX, and I am happy to report, I am still maintaining a full-time job!
Will (Age 30-40 with Cystic Fibrosis)
I have been using the BCV for 3 months. When I first started using the BCV, I was tired. Over time, I have grown to like it and noticed I’m not as tired as before. The BCV is easy to use (for both my husband & I). Michael Nibert and the support services at PSHME are easy to reach and have been very helpful.
Marian Burgess – BCV Patient