In this post, I will try to address potential fears or apprehensions that some people may have about the porta-lung. At first sight, it probably looks like a machine from outer space. It might look to some people like a blue monster waiting to consume the one who enters its chamber. Is this a fanciful notion – a figment of the imagination – because of the uncertainty about the Porta-lung? Yes. There is no truth in the Porta-lung being a monster. I have to admit, my reaction to the Iron Lung (3 decades ago) was one of fear and apprehension at having to try a ventilator which seemed like ten times my size. This fear was quickly overcome through my great determination and will to live.
Over the years I have shown people my Porta-lung and inevitably they ask: “How could anyone sleep in a machine like that? I would think you’d feel so cramped inside there. Do you actually like it?”
My answer is: It’s a great machine! I love it. It is so relaxing because it just takes over the breathing and I can sleep like a baby!
One concern people have had upon seeing my porta lung is claustrophobia. They would have to stand way back from the machine for fear of the tight space. God thankfully spared me from claustrophobia so the Porta-lung doesn’t phase me a bit.
One might get the impression that the Porta-lung is barbaric because it seems like you are strangling someone by fastening a collar around their neck. This isn’t true either. The collars need to be fastened tightly so that the machine can reach its set air pressure without too much taxation on the ventilator that runs it. Once the machine is running, I don’t feel that the collar is strangling me. I only feel the machine pushing air into my lungs and through all my airways (nose, mouth and trach). The focus is not on the collar but rather on the breathing of the machine.
No need to complain about a ventilator that helps me. My attitude is: Don’t bite the hand that feeds me. Be grateful that God has blessed me with a gift like the Porta-lung.
With my respiratory problems, my choice is between a non-invasive negative pressure ventilator or a positive pressure ventilator with invasive tubing in my throat. Hands down, negative pressure with the Porta-lung!
This was very interesting and insightful! You have a wonderful positive attitude and many will benefit from your information. I am curious to know more about kinds of health issues that would lead a person to a porta lung.
ReplyDeleteThank you for your post. I'm not sure I understand your question. What do you mean by "kinds of health issues"? Do you want to know what kind of respiratory diseases the porta lung benefits? Right now, we are targeting those with any kind of spinal cord diseases which directly impede a person from getting enough air volume to the lungs. These diseases include polio, post polio syndrome, muscular dystrophy, spinal muscular atrophy, multiple sclerosis, Non-obstructive Central Sleep Apnea, chronic obstructive pulmonary disease, Chronic Respiratory Failure and Restrictive Lung Disease associated with Kyphoscoliosis.
ReplyDeleteYou are AMAZING!!!
ReplyDeleteJust wanted to take a moment and acknowledge the use of our ventilator, (the NEV 100), that powers our Porta Lung. I hope this unit isn't going to be hard to replace once it finally wears out. My son, Brad Seaver, has used a Porta Lung since early 1990. The LifeCare Ventilator has operated pretty well under the circumstances of 10 hours per day usage for 19 years with very few breakdowns or total replacements. It has a pretty good track record of quick turnaround repairs too by our durable medical equipment company (Apria Home Health Care). So far, there have been a few circuit card replacements and the motor has been replaced a couple of times. I am concerned that there may not be enough of these legacy units available for replacement if we had a catastrophic failure of our ventilator. I am aware there is different technology available but at this present time, my son can only be sustained by a negative pressure vent and porta lung combination. Please ensure these units are readily available for patient use for years to come. Thanks Bill Seaver from Charleston, SC.
ReplyDeleteYou can use a Hayek RTX for the portalung
DeleteMr. Seaver, I understand your concerns about the NEV-100. I share your concerns. Like your son Brad, I can only survive on negative pressure and porta lung combination. Do you have a backup NEV-100 so that when one NEV needs repairing, you have another to use in the meantime? I have had some emergencies with NEVs and have to rely on Apria Healthcare (my healthcare medical equipment provider) to provide another for me. It is in Porta Lung's best interest to provide porta lung users with NEV-100s because it is the best negative pressure ventilator on the market right now. I will do all in my power to help Porta Lung find an independent distributor of the NEV because it is a guaranteed safe machine. I know of someone who repairs these machines but he will only rent them through your DME provider (like Apria). If you want to talk with me privately, please contact me at: therese.williams28@yahoo.com. I will be glad to give you more help.
ReplyDeleteThe RTX doesn't have a high success rate with the porta lung. I don't recommend the RTX.
ReplyDelete