This post is going to speak specifically to Porta Lung users, their caregivers, and healthcare professionals who use and work with the Porta Lung and its pump the NEV-100. Keep in mind, this blog's sole purpose of existence is to promote and (even to defend) the importance for the Porta Lung and the NEV-100. The two are inseparable. They are unit; you cannot have one without the other. I write this post to advocate the value of this negative pressure combo. There are many forms of negative pressure ventilation which work well and serve their purpose but this blog is not just about negative pressure ventilation. This blog is about a specific type of negative pressure ventilation - negative pressure with a porta lung/NEV-100. Yes, I am biased toward the Porta Lung/NEV-100. This negative pressure ventilation works well for patients with severe scoliosises and others who suffer from chronic pulmonary diseases. Check out www.portalung.com for more information.
Word on the street says the powers that be are doing their level best to make the NEV-100 an extinct commodity. These powers that be told me the NEV-100 is an old invention and therefore should be replaced by a "newer more up-to-date" pump called the Hayek RTX. Wonderful! Fantastic! Great, right? It is until you hear the RTX's success rate for running the Porta Lung.
Twenty Porta Lung users tried the RTX with the Porta Lung and it worked for 2 out of 20. 2 out of 20??? I think I need the RTX to have a better success rate than that before I can - in good conscience - promote it. When we delve into these numbers we can conclude the RTX put 18 people's lives potential at risk. Not good! We, who write and read this blog, are here to protect and save lives. To endorse the RTX in its present form of existence would be against my better judgment as Porta Lung user, and so I do not.
As for the NEV-100 being old and outdated, this may be true. Why should we discard something because of age? Some things that are old can be salvaged! There are countless inventions still in use today, which were "old" and "outdated" at one time. However, with man's creative knowledge they were updated and brought back into use. Telephones. Electricity. Ovens. Hairdryers. Washing machines. Radios. These are just a few of the old inventions which have been updated that come to mind. I'm just saying the NEV-100 is still valuable and can be upgraded, provided we have the creative knowledge and the financial support to make it happen.
Hello! I've just now found your blog. You are an inspiring person. I've read your story and it gives me great hope.
ReplyDeleteFirst Thanks for this post. I and my friends have been struggling to understand what is going on with them (Hayek) for well over a year now. They won't return calls, or email. The web page is so promising...how can people be so cruel?
Second, our need is urgent. For that reason I will try and, no doubt fail, to keep the emotion out. PLEASE, ANYONE READING THIS who knows of an existing tool that I can buy without a script, or plans to build an artificial lung. My man is down to virtually 1 or 2 hours of unassisted breathing. Else he is on the CPAP. He has ALS. We work together, he can connect to internet via computer and he is 100% in his mind...but not locked in. He communicates through his wife who translates. She is beyond words. Together they fight this thing.
I can't open the page about the porta lung. I can't tell if the NAV100 is still available. I googled it, sounds like some are still for sale? Does anyone know how I can get one shipped to New Zealand?
NZ won't help. When you have ALS in this country they put you in the too hard basket and encourage you to give up and go away. He should have a BiPAP but they won't even allow that.
Long story short, we can do anything with microprocessors and solenoid valves and compressors and vacuum pumps and such. We have (some of) the technology. I have tried to make a cuirass mould in my shop and it never works out. I'm out of my depth. I can approximate his torso shape (the kid in town with with a scanner wont do it because "he is afraid he could get sued! this is New Zealand for cripes sakes. I could a choked the little ...but i digress). Come on, I must be missing it. I continue to google but only just found this post via a friend. there must be a device. Or a big 3d printer?
How hard can it be to make a plastic shell with a set of valves to blow air in and out? To assist breathing, not to do the whole job...just to give this man a break and some moments of peace.
well I said no emotion. how'd i do?
If you have any ideas please contact me. the time for action is right now PLEASE. here is my email in words, replace the word at with @ and dot with . you know.. cambriaatxtradotcodotnz Whatever I learn I will make avaialbe to all interested parties. thanks wayne
Hey Wayne,
ReplyDeleteDid you get my email? You can contact Dano Carbone at Porta Lung Inc at porta-lung@comcast.net or by phone: 303 288-7575. Dano and I will help you get whatever you need whether it be a NEV-100 or a cuirass or a combination of both. Just let us know how we can help.