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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.

Easy maintenance of a Porta-Lung

June 24, 2008 on 3:58 pm | In submarinesusie | 4 Comments

The Porta-Lung is easy to manage. Once every few years we have to replace the collar on the front that seals around my neck or replace the black seal around the fiberglass door. These things just wear out over time and we just order new materials from Porta-Lung Inc. Dano Carbone is very nice and always happy to help us repair what needs repairing on the Lung. We have Apria Healthcare come quarterly to the house to check the NEV 100 ventilator to make sure it is in good condition. We rent the vents so Apria will give me new ones every year. There is very low maintenance so the family can easily care for a patient on a Porta-Lung without any medical assistance.

When I used positive pressure, my family had to change the tubing every day. They had to do a thorough cleaning to get rid of all the bacteria and germs that builds up in the tubes. We had to have 24 hour nursing care and my family never knew a moment’s peace. With the Iron Lung and Porta-Lung, we could get rid of the nursing care which cut down on medical expenses tremendously. We became more self sufficient and this allowed us more private time to be a family.

Discomforts of Positive Pressure vs. Comforts of Negative Pressure

June 23, 2008 on 9:20 am | In submarinesusie | No Comments

With my respiratory arrest in 1992, I had a lot of discomfort with having a trach and being attached to respirator tubes. After all the years of using negative pressure, I hated being trached because trachs create mucous as it is a foreign object in the throat. I was used to having an open tracheotomy without having the trach tube in my throat. Trachs are not necessary for negative pressure, but I have used the Porta-Lung while with a trach. The Porta-Lung is easily adapted to those with trachs. When you try it, you will see how it eliminates all of those discomforts of positive pressure!

Another discomfort of positive pressure is the sporadic breathing pattern. It is nerve wracking to be on a positive pressure machine because it is foreign to one’s respiratory system. As I stated in a previous blog, the rhythm of the breaths is cause for alarm because it only shoots air into the lungs. There is either too much time between breaths or not enough time. It is scary to wonder if you are getting enough air or to feel like you’re hyper-ventilating. It is very disconcerting. The lungs receive no exercise or stimulus to get the person to ultimately breathe on one’s own so for one with paralysis to the lungs, positive pressure is useless. I got weaker the longer I used positive pressure. The tubing causes infections and some problems with swallowing while eating.

No Worries with Negative Pressure Porta-Lung

June 19, 2008 on 8:59 am | In submarinesusie | No Comments

When I was a baby, I contracted spinal meningitis and had to be on positive pressure for about 3 years. Positive pressure was a nightmare! Someone always had to be on watch making sure the respirator was doing its job correctly. My parents were always afraid of the respirator malfunctioning and their fears came true. The respirator inhaled without exhaling which blew a hole in both my lungs and collapsed them. The machine had blown me so full of air that my face, head and body looked like a balloon. The doctors had to insert little needles into my veins, I guess to release all the air. Needless to say, it was scary for my family to see my like that!

When we were introduced to the Iron Lung, all those nightmares vanished because we found negative pressure was a safer means of respiration. Like the Iron Lung, the Porta-Lung is safe because it is in harmony with a human’s breathing pattern. The nice thing about the Porta-Lung is that it gives me enough strength to be out of the machine during the day so I can go about my life! If the pressure gets too high or too low, the ventilator will sound an alarm in warning, but there are very few times when we encounter problems. When there is an electrical storm and the power goes out, the machine shuts off but with our trusty surge protector, this never affects the machine. I can breathe on my own so when the machine shuts off in a power outage, it doesn’t affect my lungs in any way. It is very safe. I like to be in the Porta-Lung anywhere from 11 to 13 hours a night. That’s what my body is used to.

If you have any questions about using the Porta-Lung, you can email me at submarinesusie@portalung.com. I’ll be happy to answer questions that relate to my experience in using the Porta-Lung.

My Discovery of the Porta-Lung

June 18, 2008 on 8:15 am | In submarinesusie | No Comments

Before I speak further about the Porta-Lung, I’d like to say a few words about its predecessor, the Iron Lung. The old fashioned Iron Lung is a just a bigger model of the Porta-Lung. After living on positive pressure for three years, the Iron Lung opened up a whole new world and really changed my life forever. The Iron Lung became like a friend to me at the young age of five. I used to call it “the yellow submarine.” I must admit, it was a little scary at first for a little girl of 5 yrs old (I’m a small person) to get in this huge machine that weighed 1000 lbs! Once I began to use it though, I adjusted to it very well and it truly was a lifesaver for me. It gave me the opportunity to shed the tubes of the positive pressure respirator and strengthened my lungs to the point where I only needed the aid of a ventilator during the night. There were periods during my childhood when I didn’t need to use any kind of respirator. However, things changed when I reached puberty because my scoliosis got worse, making it more difficult to breathe. After an evaluation, the doctors suggested I should use the Iron Lung every night henceforth. We moved a lot and since the Iron Lung was too big to move with us, I started to use a more portable negative pressure ventilator called a turtle shell which was run by a compressor the size of vacuum cleaner. This ventilator was not powerful enough so gradually I began to lose strength in my lungs and catching a cold sent me into respiratory failure where I was hospitalized.

In 1992, I discovered the Porta-Lung. After using the Porta-Lung for the first time, I felt like I had known it all my life since I had grown accustomed to the Iron Lung. As a user of both machines, I can tell you that everything about the Porta-Lung is exactly the same as the Iron Lung, just a smaller version.

I have been using the Porta-Lung for 16 years now and according to my pulmonologist, it has increased my respiration levels to 100%. For one who has a severe scoliosis and paralysis in the left lung, the Porta-Lung has done wonders for me! It has improved my quality of life and has allowed me to be as independent as possible.

How Negative Pressure from the Porta-Lung Beneficial

June 16, 2008 on 8:58 am | In submarinesusie | No Comments

Negative pressure with the Porta-Lung is natural to a person’s breathing pattern. This is how it works. When the Porta-Lung inhales, the diaphragm moves downwards to push the air into my lungs. Then, when it exhales the diaphragm moves upwards which releases the air from my lungs. The Porta-Lung conforms to a person’s respiration patterns which can improve one’s general health over time. For someone like me whose lungs are paralyzed, it feels wonderful because it completely takes over my breathing and gives me a total rest. I really look forward to it at night after breathing on my own throughout the day! With a computerized ventilator such as the NEV that I use, I can customize the settings to conform to my breathing pattern – rhythm feels most comfortable to me. For example, I am most comfortable with an air pressure of 26 and a rate of 15 breaths per minute. Some people may like more pressure with fewer breaths per minute so the NEV allows one to set these levels to adapt to the user’s body.

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