My New Life ( Change of Respiration as from December 2004)

I did not want to believe that something was wrong with me but my friends told me repeatedly that it was not normal that I looked tired and worn out all the time. In the car, watching television or reading, I kept falling asleep which was highly dangerous for me as I stop breathing the moment I fall asleep. The smallest effort exhausted me enormously, outings with friends I just couldn’t do any more, I only felt well in my “iron lung” - the bed which provided me with air. Trying to suppress my concern and following my friends’ advice I made an appointment with a doctor. His diagnose : my blood values were appalling. The nitrogen content was much too high and the oxygen content much too low. The reason had to be insufficient respiration. I was immediately transferred to the specialized pulmonary centre where I was told that my good old iron lung did not provide me with enough oxygen any more. I took this diagnose very badly as I just couldn’t believe that this respiratory unit that had accompanied me from early childhood and had provided me with such a faithful service would suddenly not be good enough any more. However, I was told by the doctor that I needed to change the method of respiration otherwise I would fall asleep never to wake up again.

This argument was very convincing. When asked about the possibilities available for me the doctor commented that the choice would be between a tracheostomy or a breathing mask. I was decisively against the former, to have a hole in my neck I would accept only if there was no other help. On the other hand, I got extremely anxious at the thought of leaving my breathing to the mercy of a new and strange device. It took me a long time to accept that another device would have to replace my iron lung. But to fall asleep and never to wake up again was unacceptable. So I agreed to have a go with the breathing mask, and the moment I gave my agreement two nurses dashed off as if they had just been waiting for this moment and got all sorts of respiratory devices . One mask after the other was pressed on to my nose until they found the right one to start the test with. The next thing they needed to find was the right respirator. The first device they tried I knew right from the first breath that it wasn’t for me, when they tried the third device I felt I might be able to cope with it. The night that followed was an absolute nightmare .

I was put on the bed which was an unfamiliar place for me, I was connected to a number of different measuring devices and the mask which was connected to the respirator by a tube was pressed to my nose and held firmly in position by 2 rubber bands wrapped round my head. I tried to get used to the rhythm of the new machine. It was weird to have the air forced into the nose, quite different from the almost natural inhalation and exhalation of the iron lung. But when I tried to relax I noticed that the concentrated air forced into my body had a positive effect and I seemed to feel that I was getting stronger. But trying to fall asleep I was overcome by fear – my subconciousness missed the regular rhythm of my old lung and I thought I would fall out of bed any moment. After one hour of anxiety I called for my carer asking him to put me back into my iron lung which was next to me , so that I could fall asleep.

I continued practising by the hour, even during the day. My blood values improved considerably which was very encouraging .The third night in hospital I managed to sleep for a certain time with the respirator, and then I was allow to go home.

Being back home I suddenly realized that I could fall asleep arm in arm or hand in hand with my girlfriend , something that had never been possible before. This was a great positive realization for me. Yes, I was always locked away in the iron lung. Now I could sleep next to her in bed, which was a very big incentive to get used to the new method of respiration . But having slept for 40 years inside protective walls to be in a normal bed was extremely difficult . Again and again I woke up thinking the cover of the lung was not closed, or I thought I couldn’t get any air. I knew that this was just my imagination, but I just could not help waking up in a panick gasping for air The nights were becoming a misery, to sleep through the night was just not possible, neither was it for my girlfriend. Several times I insisted angrily that she should put me back into my lung, I simply could not be bothered any more to continue my efforts. But she refused saying: "I won’t do it, you will manage !”

Until one night when I panicked , Karin got up, assured me that all was well, put a chair next to my bed, sat down and held my hand. Nothing else.
"What are you doing now?" I asked, irriated.

"I will sit here and hold your hand until you finally have fallen asleep – even if I have to sit here all night." she said in a very friendly but very firm tone of voice. . I knew she would sit there for hours without sleep. This I didn’t want and couldn’t do to her and from that night on things improved.



Today I am "fit as a fiddle” I sleep well and deeply at night and am awake and active during the day. The times of the iron lung are a matter of the past………