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Patient’s Setback

May 13, 2009 on 10:05 am | In submarinesusie | No Comments

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.

A Patient’s Misfortune

May 7, 2009 on 2:11 pm | In submarinesusie | No Comments

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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