portalung.com Blog http://portalung.com/blog Just another WordPress weblog Sun, 28 Feb 2010 19:19:36 +0000 http://wordpress.org/?v=2.5.1 en My New Discussion Forum http://portalung.com/blog/2010/02/28/my-new-discussion-forum/% http://portalung.com/blog/2010/02/28/my-new-discussion-forum/%#comments Sun, 28 Feb 2010 19:19:36 +0000 submarine susie http://portalung.com/blog/?p=112 Recently I was introduced to a woman who also uses the Porta-Lung. Her name is Rachel, and, like me, she has been using the Porta-Lung since 1992. Rachel and I soon began sharing stories about the Porta-Lung, and we both agreed that it was a great comfort to be able to talk with another person who actually “gets it.” So, we decided to create our own forum-driven blog to allow others – patients, respiratory therapists, doctors, friends and family – the opportunity to share stories, discuss various topics and ask questions about the Porta-Lung, negative-pressure ventilation and respiratory health in general. Please join us at “Breathe Easy: The Porta-Lung Blog” (http://portalung.wordpress.com).

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Patient’s Setback http://portalung.com/blog/2009/05/13/patients-setback/% http://portalung.com/blog/2009/05/13/patients-setback/%#comments Wed, 13 May 2009 16:05:13 +0000 submarine susie http://portalung.com/blog/?p=101 I got the Porta Lung shortly after I went into intensive care at Mercy Hospital and it was my hope that the doctor would let my dad operate it for me so then I could get strong and get out of there. Yet, no such luck! I was at the mercy of the ICU doctor. My parents’ hands were tied and there was little recourse they could take! To think that I could have been out of the hospital in a matter of days if the doctor had given us permission to do what was best for my health makes me very wary of doctors in general. It produces questions like: Do they really care about the individual person? Do they want to relieve the person’s pain and suffering and take a risk for that person? Or do they (with all their education and training) think they have all the answers and overlook the patient’s needs?

In some cases, doctors are extremely caring and give themselves in generous service treating their patients as a whole person! I have met very humble doctors who were willing to admit they didn’t have a solution to my problem, listened to me and my parents, and then let me go on my way when they knew they couldn’t help me.

In other cases, doctors are not so sympathetic. They seem to have a mindset of following regulations and doing things by the book no matter what the circumstances call for. They don’t want to hear any alternatives and think their way is best. The doctor in ICU insisted that all patients be weened off the respirator whether it worked or not. In my case, it did NOT work.

To ween me off the respirator, the doctor ordered that the air volume be turned down. Having the air turned down when you do not have the strength or the ability to breathe on your own is a very terrifying experience! It is like slow torture or a type of suffocation where you are literally gasping for breath. I got to the point where I wanted my family members to be with me always to make sure the air wasn’t turned down. When no family members were present they would come in to turn down the air pressure and I cried many times this happened, knowing my utter helplessness. We had some connections at Mercy with my sister’s father-in-law being a neurologist there. In desperation we turned to him for help but he could not do much. Though he got had a heated argument with this doctor, he did not have jurisdiction over ICU and couldn’t get the doctor to listen to him. He got a pulmonologist involved and though the pulmonologist had a few words with this doctor, he could not change this doctor’s mind. However, the pulmonologist came to visit me and turned the air up on the machine. After four months of being in ICU the doctor sent me to a rehab center in a suburb of Pittsburgh hoping they would be more successful in weening me off the respirator. But, they were not. We ran up $800,000 in insurance money between the two medical facilities and experienced much stress. If I can save people from having to go through the bureaucracy of hospitals by convincing them of the benefits of a porta lung, I would be so thrilled! I would like people with respiratory problems to be able to take care of themselves at home without having to be subject to hospital regulations and the bills that come.

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A Patient’s Misfortune http://portalung.com/blog/2009/05/07/a-patients-nightmare/% http://portalung.com/blog/2009/05/07/a-patients-nightmare/%#comments Thu, 07 May 2009 20:11:55 +0000 submarine susie http://portalung.com/blog/?p=100 How many of you have had something go wrong with your health, end up in a hospital, and wish you had never gotten to the point where you needed hospital care? How many of you were in such a situation, you knew how the problem could be solved, but you didn’t have the medical equipment on hand to prevent the inevitable hospital visit?

I was in such a situation sixteen years ago. This is how it happened. To give my readers the full picture, let me give a little background on the condition of my breathing capabilities. I used to have an old fashioned Iron Lung as a child, which I slept in every night for four years straight. It strengthened my lungs to the point where I did not any assistance for breathing at night for about 3 to 4 years. Then, when I turned thirteen my scoliosis became more severe and after being evaluated by a pulmonologist at Mercy Hospital in Pittsburgh, he said I would be dead within a week if I did not go back on a respirator. When I returned home, my parents put me on the Iron Iron Lung and my oxygen levels immediately rose to their normal status.

A couple years later we had to relocate to Pittsburgh but could not bring the Iron Lung with us as it was too big and monstrous to move anywhere. So I tried a cuirass negative pressure respirator with jump suit and a cage that goes over the respiratory system. This was run by a vacuum cleaner type ventilator. As we would soon find out, this cuirass respirator could not provide enough air to my lungs to sustain me; thus, I got very weak. Then I caught a cold and since the cuirass didn’t give me what I needed, my CO2 rose so high that I just passed out. Thus, I ended up in the intensive care of Mercy Hospital where I remained for 4 months.

The one good thing that came out of all this was the fact that we found out about the Porta- Lung. Up until this time we didn’t know such a negative pressure respirator existed! However, we did know what kind of respiration I needed - the kind the Iron Lung provided. We knew the Iron Lung had become extinct so the question then arose: What respirator was comparable or similar in breathing rhthym to the Iron Lung? The Porta-Lung.

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The Uniqueness of the Porta-lung http://portalung.com/blog/2009/03/07/the-uniqueness-of-the-porta-lung/% http://portalung.com/blog/2009/03/07/the-uniqueness-of-the-porta-lung/%#comments Sat, 07 Mar 2009 17:58:10 +0000 submarine susie http://portalung.com/blog/?p=98 The Porta Lung is a unique respirator and should have a place in medical science. Patients should have a choice between the kind of respiration we use. There should be a choice between positive pressure ventilators as well as negative pressure ventilators.
The medical profession may not see the invaluable breath work that the Porta-lung provides to its users. Please help me answer your concerns, questions or hesitations.
What scares you about the porta lung?

How would you like it to be designed to make it more comfortable and appealing to you?

Granted the Porta-lung could be intimidating at first glance. The Blue Monster! (see post)
If the collar scares you, please understand that it can be adjusted to fit your comfort level.

Do you feel like you will be trapped in the belly chamber of this Blue Monster? Instead of thinking of the Porta-lung as a monster, think of it like a brand new pair of shoes that you have to break in. You don’t always break in a new pair of shoes in a day; rather you have to get used to their feel. You have to get used to the feel of the Porta-lung…it takes time. Give it time to grow on you.

If you have serious breathing problems as I do, you soon will find that the Porta-lung can be more of a gift in your life than a burden.

Express your concerns, your frustrations and what you would like changed about the Porta- lung if you were to use one.

Please feel free to voice your opinions to me.

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Innovation in Negative Pressure Vents http://portalung.com/blog/2008/10/04/pegaso-cough-assistance/% http://portalung.com/blog/2008/10/04/pegaso-cough-assistance/%#comments Sat, 04 Oct 2008 18:26:37 +0000 submarine susie http://portalung.com/blog/?p=80 After doing some research on the Pegaso Cough Assist Device, I think it could help cystic fibrosis and emphesyma patients alot with keeping their from phlegm buildup in their lungs. I get phlegm in my throat and oftentimes it is difficult for me to cough it up completely, even on the NEV and the Porta-lung. Therefore, it might be useful to those who need to cough a lot to have a Pegaso Cough Assist.
This new vent is just one of many areas where porta-lung Inc is try to modern their equipment and adapt to people’s independent lifestyles. Who knows, maybe in the future we will see the porta-lung’s descendent! It’s descendent might be more innovative and even more up-to-date with the times.

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A Cordial Invitation http://portalung.com/blog/2008/09/02/a-cordial-invitation/% http://portalung.com/blog/2008/09/02/a-cordial-invitation/%#comments Tue, 02 Sep 2008 21:17:15 +0000 submarine susie http://portalung.com/blog/?p=79 Hello Folks,
If you like the posts I have written so far, feel free to come on to the blog and post your thoughts and concerns about the porta lung, breathing, or anything respiratory that comes to mind. Express your likes or express your dislikes about my blog - that’s ok too! Criticism is fine if it is expressed politely and respectfully. Just come on and express yourself in whatever way you feel comfortable. This blog is written for you, the viewer.

Happy posting!

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Elevation while Congested is Key http://portalung.com/blog/2008/08/18/elevation-while-congested/% http://portalung.com/blog/2008/08/18/elevation-while-congested/%#comments Mon, 18 Aug 2008 16:48:30 +0000 submarine susie http://portalung.com/blog/?p=78 I found that elevating the feet of the Porta-Lung and letting mucous drain to my head is very important for getting the best out of the Porta-Lung’s respiration. At home I always have my feet elevated but we have been traveling so for the past week, we have kept my porta-lung flat. The other night I had a lot of mucous to cough up and when I cough up stuff this means that I try to blow it out my trachea (or get suctioned). In the porta-lung I have to have a home-made trach put in my trachea while I am inside the porta-lung to protect me from having the air sucked out of my lungs. When I cough up stuff with this home-made trach inside my throat, the trach gets clogged and I can’t breathe, if the porta-lung is flat. The other night I tried to blow out stuff with this trach in while the porta-lung was flat and the trach got clogged blocking my airway. I figured out that elevation is important and drainage is key - in the best of circumstances. If the porta lung is elevated then I can breathe around the trach. So, for those with congestion elevation is key!

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Resuscitation with Porta-Lung cont. http://portalung.com/blog/2008/07/29/resuscitation-with-porta-lung-cont/% http://portalung.com/blog/2008/07/29/resuscitation-with-porta-lung-cont/%#comments Tue, 29 Jul 2008 18:56:52 +0000 submarine susie http://portalung.com/blog/?p=77 I promised to tell my readers how long it takes to get into the porta-lung. So here is the exciting news! From getting through the front port hole and fastening the collar securely around the neck to turning the NEV on, it takes 3 to 4 minutes. I’m not sure if that is fast enough to resuscitate someone. This is a question for all you brilliant respiratory therapists out there to answer or investigate. Have some fun and challenge the idea!

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Porta-Lung vs. Bi-PAP http://portalung.com/blog/2008/07/25/75/% http://portalung.com/blog/2008/07/25/75/%#comments Fri, 25 Jul 2008 19:58:53 +0000 submarine susie http://portalung.com/blog/2008/07/25/75/ In my opinion the Porta-Lung is better than Bi-PAP for people with chronic respiratory problems because the Porta-Lung is restful and breathes for you so you don’t have to worry about breathing on your own. My biggest fear is going to sleep and to stop breathing during a deep slumber. So I choose to be on a ventilator that I KNOW will consistently breathe for me to (mentally) allow me to sleep. I don’t want to have to consciously tell myself to breathe 24/7 with my compromised respiratory system. Bi-PAP is great for those with respiratory diseases like asthma where the patient only needs a ventilator for periods of time but I’m not really convinced it is good for long term respiratory patients who depend on ventilators for breathing assistance. Bi-PAP is mostly used in sleep apnea cases and as a transitory means of ventilation – where the patient goes from intubation to weaning off a respirator. With Bi-PAP ventilation the positive pressure generated by the ventilator, combined with the negative pressure produced by the inspiratory muscles, produce a flow. This means that the machine depends somewhat on the patient’s breathing muscles to produce the negative pressure effect that is required. If you depend on my lungs to produce a negative pressure for too long, you will witness the decrease of oxygen and the lungs going flat - like a tire being deflated. When I did a sleep study for CPAP, I flunked…didn’t sleep a wink. The reason being, I was stressed and the machine didn’t feel good. I imagine the same results would occur if I tried Bi-PAP. Bi-PAP sounds like it is basically a positive pressure ventilator without the tubes. The Porta-Lung is about 97% negative pressure with 3% positive pressure which really is more compatible with the human respiratory system. The Porta-Lung never fails – it’s as steady as the day is long.

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Resuscitation with Negative Pressure http://portalung.com/blog/2008/07/23/resuscitation-with-negative-pressure/% http://portalung.com/blog/2008/07/23/resuscitation-with-negative-pressure/%#comments Wed, 23 Jul 2008 21:26:04 +0000 submarine susie http://portalung.com/blog/?p=74 I read an article on the invention of the Iron Lung and it is very interesting to note that this respirator was the leading device for resuscitation in the late 20th century. In an experimentation, Philip Drinker placed an anaesthetized cat in a sealed iron box with a neck collar, allowing the body to be within a fully-pressurized environment. Under these conditions, he was able to record accurate measurements of respiration as it was directly relative to his control of the air pressure within the sealed box. Inhalation increased the cat’s volume within the box and made the pressure rise, while exhalation produced the opposite effect. Porta-Lung Inc has conducted similar research studies on the Porta-lung at John Hopkins and other places but instead of a cat, they used a rabbit. With a ventilator like the NEV-100, more accurate measurements of respiration can be recorded with the Porta-Lung because the settings on the NEV are very precise.

The scientist wanted to test a hypothesis: if the cat could not breathe independently, then he would experiment with air pressure by increasing or decreasing the pressure in the chamber to induce respiration. Drinker injected the cat with the South American arrow-poison curare to produce an effect of extremely relaxed muscles, to the point of respiratory arrest. He then placed the cat into the sealed box and used a hand-operated piston to manually control the pressure. The experiment was successful and showed that controlled pressure in a sealed environment could induce respiration.

This is also true for humans. When a person has respiratory arrest, he or she can get into a porta-lung to be resuscitated. With the increase in air pressure, it induces respiration and gets the lungs moving. Is positive pressure a better way of resuscitation? It is faster, I agree, and in an emergency faster is better. However, I am going to be controversial and say that one could be resuscitated just as quickly in a Porta-Lung. It is only a matter how fast can you get the patient inside the chamber, fasten the collar securely and turn the machine on to breathe. When I get in the machine tonight, I am going to time this procedure and see how long it takes.
To continue being controversial I am going to pose a question: Was replacing negative pressure with positive pressure as the primary means of resuscitation good for the person’s health? I will answer this controversially and say “No, in the long run it is not good for one’s health – not overall. Why? Because positive pressure can damage the lungs, but not only that, it weakens the lungs and makes them lazy. After awhile of being on positive pressure, the lungs can’t do anything and then the person begins to think, “I need this air blown into my lungs because they don’t work and there’s no way I could ever breathe on my own.” Whether one tells himself this or someone in the medical field does, it is a defeatist attitude. It is also a mistruth. The lungs can work independently if they are given a chance.

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