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My Friendly Ventilator

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

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.

8 Comments »

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  1. Hi! Your vision of the phrase “quality of life” is right on.So often that’s translated into mechanical concepts:”how many things can one DO?” or even “How much does this level of activity cost?”,all compared to some standard of a”good life”.Poor projected quality of life can often be a self-fullfilling prophecy, whether made by doctor,patient,or average person.Whenever ANYONE receives assistance in their challenges,quality of life improves immediately…and breath is basic.In life,many cultures in the world consider only this moment,this day,and place the value of each and every life as infinite.from this,a life’s value is estimated by how completely one is present,and how deeply this moment is experienced.So any life that’s “characterized by hope,value freedom and happiness” sounds like a pretty high- quality life,and if the Porta Lung helps that by assisting ease and consistency of breath, it must really be worth the ride.Thanks for sharing your experience and vision so openly and passionately!

    Comment by Rambler — July 2, 2008 #

  2. Thank you, Rambler, for your insight and comment. Yes, I have heard the phrase “quality of life” determined by how many PHYSICAL things one can DO and how WELL these physical things are done. I don’t agree that a person’s quality of life should be measured solely by physical abilities. There is more to a person than the physical. People are made of spiritual, physical, mental and emotional elements; and all of these elements must be considered when we talk of the healing process. But, to keep matters simple we will restrict this conversation to the physical element. Whenever one receives assistance to their health, yes, of course, their quality of life improves. It is ludicrous to deny this because it becomes evident in the person’s psychology and behavior.

    What did you mean when you said “In life, many cultures in the world consider only this moment, this day, and place the value of each and every life as infinite”?

    Do you mean that some people believe they will live forever on earth or that there is no life after death? I believe that we will die but I also believe there is life after death. Having said this, I believe we each have a responsibility to make loving, moral choices. This means we need to make choices that show Christ’s love to our neighbor.

    What did you mean when you said “From this, a life’s value is estimated by how completely one is present, and how deeply this moment is experienced”? I have my own theory on how one’s life should be valued, but I would like to hear your theory first.

    Comment by submarine susie — July 3, 2008 #

  3. What a rich and challenging exchange!Keeping things simple by referring back to the physical element is a great idea…they don’t call me Rambler for nothing! SO.Some cultures don’t even have the verb “to be” in their language.There’s no “I will be, you have been,that will not happen”etc.Life is simply happening NOW, within the natural cycles of day and night,seasons and tides,etc.Each living being has infinite value because there’s no thought of Seperation…the “whole”can’t exist without any of it’s parts.Trees breath out what I breathe in,they breathe in what I breathe out..how are we seperate?So,each individual life is as valuable as the whole universe, because there’s no difference..no seperation..each life IS the universe. One could say,then that my “job”here is to be as completely ALIVE as I can possibly manage; that’s how I fullfill my destiny,express God’s Will,however you want to say it. And amazingly, a great place to start is with BREATH,right back to our immediate and basic experience.” Arise from one’s breath, and behold the Face of God”. It’s the place from which we choose life. That’s all for now….if I say more now I’ll just become less clear.Thanks for getting my brain going on all this! Till next time…Randy

    Comment by Rambler — July 4, 2008 #

  4. It IS a rich and challenging discussion! Thank you for raising the bar by making it so intellectually stimulating. :-) Did you realize that you’ve made it very philosophical? I don’t know a lot about philosophy yet but I will try to keep the discussion somewhat intelligent so as not to bore you completely and make myself look foolish in the process. :-D

    It is good to live in the present moment, to accept THIS moment and thank God for what we have without worrying about what will happen out in the future. I can’t say this is an easy thing to do though. :-) We can only know the present; we don’t know the future. We do learn from the past so we should not dismiss it altogether. What cultures are you referring to? When you say “They don’t have the verb ‘to be’”, do you mean they don’t have a word for this verb?

    People ARE different from trees…we have an intellect and a will so we can make rational decisions whereas trees can’t. Do you agree with this?

    It is true that we depend on trees for oxygen and trees depend on people for carbon dioxide to make chlorophil. So in that sense, we aren’t separate. Pretty cool how God designed the universe that way! :-) We have infinite value only in that we are adopted by God the Father through Jesus. But we are very finite still because our bodies are mortal.

    Sorry for preaching. It seems like the spiritual is intertwined with the physical. Can’t seem to restrict our discussion to just the physical. :-)

    Comment by submarine susie — July 5, 2008 #

  5. Sorry to take so long to get back on this one. Sometimes the mechanics of life get in the way of “the good stuff!” But that could be the ONLY restriction in this discussion…after all, it’s a blog! Don’t know what the limits would be, really! How about you other people out there in the virtual universe? Can YOU separate the physical from the spiritual?

    Comment by Rambler — July 16, 2008 #

  6. Maybe so, maybe not. But I’ll bet you can spell it.(Sigh.)

    Comment by Rambler — July 16, 2008 #

  7. Yeh! COME ONE, COME ALL to this wonderful mentally challenging discussion!!! :-) :-D Rambler and I invite you to join our discussion. Please, post your thoughts right here. :-)

    As for separating the physical from the spiritual, this seems to me to be impossible. After all, we were fashioned as ONE body, not four (as some may want to believe :-) ). The spiritual element often moves the physical element of the healing process along. In many cases (whether one acknowledges or understands there is a supreme being guiding the universe) our attitude toward the spiritual often affects the healing process. I might even blame God for my illness. I can get so angry with God for my illness that it causes me to despair, losing the will to live. This is how our spiritual element can affect the physical element. I can literally stop the healing process with a negative mental and spiritual attitude. Where does healing and our will to live or desire to be healed come from? It comes from love - love of a person who cares for us and especially the love of God. The Great Healer heals us and puts people in our lives to help us heal.

    If I am angry about being sick I inhibit myself from healing because I allow myself to build up anger inside of me which affects my mind, my heart and everything else. I become angrier and angrier that I am sick and this causes depression (a serious disease of the mind) and puts more stress on my heart. Do you agree with this assumption, Rambler?

    We must be open to this healing. Sometimes we do not always have a choice though. Sometimes we are put into a bad situation and are forced to make the best out of this inadequate means of care. It is not always easy to do this. If we are spiritually attune, we are inclined to believe God will help us out of the bad situation somehow. This is where these people find their hope in times of suffering.

    Comment by submarine susie — July 17, 2008 #

  8. spell what?

    Comment by submarine susie — July 17, 2008 #

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