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The Blue Monster: Fears About the Porta-Lung

July 4, 2008 on 2:53 pm | In submarinesusie | 8 Comments

In this post, I will try to address potential fears or apprehension 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!

Achieving Your Goals Inside the Porta-Lung

July 4, 2008 on 12:17 pm | In submarinesusie | 4 Comments

What if the individual needed to be inside the Porta-Lung 24 hours a day? Could he live his own life or make a living on his own? I don’t know, but I don’t see why not. One could use a computer while inside the Porta-Lung with voice recognition technology. Also, one could have a hands free telephone with a soft headset to go on his head so that one could lay there and talk to clients, family or friends without getting a headache.

If you are physically handicapped but have the use of your mind, the Porta-Lung should be a help, not a hindrance, to improving your life. One has to be able to breathe in order to live. Good oxygen levels in the body are vital to the heart and the overall functioning of the organs. My first concern is being able to breathe; everything else is adapted to this concern.

You can have a life outside the Porta-Lung. I went to school for first, second and third grade. Then I was home schooled from fourth through twelth grade. During these years I had several tutors. Some came to the house or I would go to them for tutoring. Though it takes me longer to do things with my handicap, I am working on getting a college education and hope someday to have a few books published. I enjoy writing for this blog with the mission to spread the news about the benefits of the Porta-Lung.

If you have any interest and want to know more about using the Porta-Lung, feel to post your questions here. It’s easy! Just register and post. I’ll be glad to answer any questions that I can.

Porta-Lung’s Participation with Respiratory System

July 3, 2008 on 11:11 am | In submarinesusie | 2 Comments

The Porta-Lung relaxes my lungs so that they conform to the breath work of the machine while I’m in it. It is sort of like someone who reaches out their hand to help someone who walks with a limp. When the one limping takes the hand of the helper, suddenly he can walk a little more freely feeling confident that he won’t fall. The Porta-Lung is the “helper”. By cooperating with the its breathing rhythm, I am, in a sense, unconsciouly breathing along with the machine. The Porta-Lung is taking the burden off my lungs like the helper who reaches out his hand to the limper. I get stronger as I work to align myself with the Porta-Lung’s aid to the thoracic cage. The relaxation of being inside the machine comes with the Porta-Lung’s increase in my oxygen level and the elimination of carbon dioxide. Carbon dioxide tends to build up more rapidly in those with respiratory difficulties because of weak lung capacity.

How to make the Porta-Lung more user Friendly

July 2, 2008 on 11:21 am | In submarinesusie | 2 Comments

From the days of the company’s creation, Porta-Lung Inc has improved the materials used with the Porta-lung by leaps and bounds. In the old days I used to use a plastic collar which was paper thin. Someone could poke a hole in it with their fingernail by accident, creating problems in the neck seal. Now they use nylon and polartek collars which are thicker and softer on the neck. I like the polartek collars best because they give a better seal so you don’t have to tighten the collar as much.

I believe customization to certain features of the Porta-Lung might be a good idea. For some people, the inside length might not be long enough so customizing it for tall people would make the product more appealing to a wide range of people. If the patient has to stay in the machine all the time, it might be wise to invent a system for them to read while in there. For instance, I would put a shelf on the front to hold the book and then put a remote inside for the patient to turn the pages.

My Friendly Ventilator

July 1, 2008 on 10:07 am | In submarinesusie | 8 Comments

Is a ventilator a pain in the neck? Does it take over your life? The answer is: No. A ventilator isn’t meant to be an albatross around the patient’s neck. In many cases, the ventilator is a burden because people don’t know how to use it. My hope with this blog is to let people know that the Porta-Lung is a respirator worth trying. It can be made to be more user friendly. Ordinary people without any medical knowledge can learn to use a Porta-Lung with simple instructions from Porta-Lung experts.

My vent is my friend as long as it runs smoothly! It is my breath of life, and in a way, it has become part of me, as I am dependent on it for its assistance during the night. I read in an article online that most doctors and health professionals don’t think ventilators improve a person’s quality of life. The most common reason is a “poor projected quality of life.” When we talk about the NEV-100 and the Porta Lung, I would have to disagree. In my case, I wouldn’t be alive today if I didn’t have a NEV and Porta Lung so I would say my quality of life has improved from using it.

The article reports how clinic directors underestimated the satisfaction reported by those who use ventilators. In a life study by John Bach, he compared responses of 80 muscular dystrophy ventilator users with responses by 273 MDA clinic directors. The study concluded that patients who were perceived by physicians to have a poor quality of life were less likely to be offered assisted ventilation. How can physicians be so sure that these people’s quality of life would not improve, if they were offered assisted ventilation? How is the phrase “poor quality of life” to be determined? Some may think that those with any handicap have a poor quality of life. However, it has been proven those with handicaps can have a better quality of life, if they use a ventilator, especially a Porta Lung.

I recently talked with a young man who has muscular dystrophy and uses a Porta Lung. He is very happy with it and would not want to change to another type of ventilator, if he doesn’t have to. He has used the Porta Lung since the early stages of contracting the disease and likes the way it feels. I agree with his opinion.

In a 1992 study by Bach and Campagnolo of 395 ventilator-assisted people who had had polio, 86 percent reported their lives were characterized by hope, value, freedom and happiness. The Porta Lung gives hope and a sense of value to the individual in that its breath work is reliable and allows the user to be their own person while on the machine.

Therapy in Constant Negative Base Line Pressure

June 30, 2008 on 9:05 am | In submarinesusie | 6 Comments

The Porta-Lung feels very therapeutic with its constant negative base line pressure. Just as a PT gives therapy by stretching a person’s leg or arm muscles, the Porta-Lung gives therapy to the lungs through its breath work. The Porta-Lung user can breathe in sync with the machine without having to do all the work. For someone with respiratory problems, my diaphragm and lungs really appreciate the rest after a hard day’s exercise. The Porta-Lung decreases the carbon dioxide levels in my lungs which gradually rises throughout the day. In the past there have been times when the CO2 rose to dangerously high levels, causing me to pass out. Also, the air flow in the Porta-Lung chamber helps to get air into those areas of my lungs which are non-functional due to paralysis. It is very consoling to know that the Porta-Lung can bring my oxygen levels up to their highest potential. I think I normally breathe with 1 ½ lungs considering my respiratory paralysis. When I used positive pressure, I noticed that my heart rate would skyrocket. Perhaps this was due to the breathing pattern of positive pressure and the shallowness in the breaths. Whatever the case, it wasn’t restful. It’s pretty cool to have a machine like the Porta-Lung to do the work for you!

As I stated in previous blogs, the Porta-Lung can be refreshment to those with respiratory problems. One time I had an accident where I passed out in the car and ended up in the hospital. We had the Porta-Lung in the back so we brought it into the emergency room of the hospital and they put me on it immediately. Within a half hour I was fine.

Easy Transportation with Porta-Lung

June 27, 2008 on 8:21 am | In Q & A, submarinesusie | 4 Comments

We have traveled by car with my Porta-Lung. It is very doable. My parents load into the back of our Explorer conversion van and off we go. We have brought it into hotels where we put it on the luggage cart and wheeled it into the room. We either lay it on the bed or put it on the floor. It’s pretty heavy at 96 lbs, but manageable! I have never put my Porta-Lung on an airplane for fear that the airlines would damage it, putting it in the baggage hold of the plane, or fear they could lose it altogether. One is better off erring on the side of caution so if I fly, I go to my relatives’ houses where I have a Porta-Lung already set up.

How do I adapt to the Porta-Lung if I have a trach?

June 26, 2008 on 9:30 am | In submarinesusie | No Comments

When I was released from the hospital in April of 1993, I still had the trach tube in my throat. The doctors had to do another tracheotomy on me because the first one was nearly closed up. They did the second a bit lower than the first. With this change, we discovered the collar on the Porta Lung covered my trach which was a potential danger as the machine could suck the air out of me. The air that the machine is putting into me could be sucked out if the trach got underneath the collar. Therefore, my parents did a couple of adaptations to get the Porta-Lung to work for me. First, they reversed the Porta-Lung collar from the outside to the inside of the machine to keep the collar away from the trach. Then they adapted a suction catheter to act as a little trach to keep the collar from covering the hole and sucking the air out of me. This is the system we still use to this day.

An Unknown Phenomenon in the Medical World

June 25, 2008 on 2:52 pm | In submarinesusie | No Comments

To most people in the medical field, the Porta-Lung is a frightening machine because it is a new phenomenon and one that is just being discovered. Most doctors are afraid to try it. When I tell doctors about the Porta-Lung and negative pressure, they look at me like I’m crazy. Some will listen for two minutes and then disregard it because they don’t have the time to learn about it. Others just want to follow the status quo and not rock the boat. I have met some doctors who are so arrogant that they will not even look at it and insist that I “go by the book” in terms of following hospital regulations by using positive pressure vs. negative pressure. It’s like the old adage: When in Rome do what the Romans do – you have to follow the rules of the system to get the care needed. There is too much bureaucracy, not enough specialized care. I think doctors need to figure out what is good

Slave Principle of Positive Pressure and Freedom of the Porta-Lung

June 25, 2008 on 2:10 pm | In submarinesusie | No Comments

Being attached to a positive pressure respirator makes me feel like a slave to a machine. I don’t like it. It just blows air into a person and doesn’t even feel good. It doesn’t give the air volume I need to lead a normal life. With my breathing problems, I would have to be attached to a positive pressure respirator 24/7 to get enough air to breathe. It made me feel a bit like an addict waiting anxiously for the next breath that the positive pressure respirator would blow into me. I felt more like a vegetable rather than a human being. Positive pressure handicaps one and psychologically makes them a vegetable whereby they think they will never be able to breathe on their own. It’s unproductive. Also, positive pressure can diminish a person’s sense of dignity and worth. Instead of people seeing me for my personality, they saw the respirator.

I think being hooked up to a positive ventilator is horrible! You only have so much slack with respirator tubes with which to move about. If you move too far, it feels like the tubes will tear the inside of your throat out. The Porta-Lung allows me to live a normal life and have some independence. While I’m inside the machine, I can talk and eat without discomfort. The Porta-Lung is a non-invasive respirator so it doesn’t affect the inside of your body like positive pressure does. The Porta-Lung allows the person to live, not just exist. After improving the lungs, it improves the whole body because as one who lives with respiratory problems, I can tell you a good ventilator such as the Porta-Lung is the key to survival and increasing longevity.

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