Tuesday, January 7, 2014

Photo and design Pamela Lindgren 2014 ©
Jennys story
Written and experienced by Jenny Björk.
Translated by Margaret Mayers for Recycle Me.

Will I ever come home again?
Not being able to walk from my bed to the breakfast table when I woke up was not a reality for me until just over thirty years ago. Inhalation and training were first on the programme if I was to have a good day, then breakfast.

I was born with the lung disease cystic fibrosis. This diagnosis means that one continually has thick phlegm blocking one’s lungs and air passages. I always had to inhale expectorant medicines in order to have a satisfactory day, followed by exercises of various kinds. Training was a matter of breathing exercises or ”thumping” and a lot of physical work. When I was at my best, it took about an hour (morning and evening).

I had nothing to compare with, so I adapted myself and my friends were kind and waited for me when we were in junior and middle school. However, when we got to secondary school there was not really the same understanding. Since the phlegm tickled my throat, I had to cough more or less non-stop. That was irritating for some of my schoolmates when we had tests or lectures etc.

When I was about eighteen, I started on courses of intravenous antibiotics. As a CF-person, I had to do this at home, since I had to take the antibiotics three times a day, that is every eighth hour. We had to watch the clock twenty-four hours a day for ten days. The courses of intravenous antibiotics helped me more than penicillin in tablet form. I also sometimes had to inhale antibiotics so that they went straight into my lungs and that was the best treatment for me.

As time passed, my lung function deteriorated and the courses of antibiotics became more frequent. From having needed two courses per year and inhalations twice a day plus exercises, I was now on four to six courses a year and less physical training. When you get successively worse like that you don’t notice the constant deterioration. I lost a lot of weight since all the energy I acquired from food went into keeping my lungs going as far as possible. It is a strange fact that you get used to this without being really aware of it.

In the autumn of 2002 when I was 29 I was in such bad shape that the courses of antibiotics followed each other in rapid succession and I had no energy for physical training. I inhaled three times a day and felt perpetually tired and cold. Was on oxygen round the clock. We began to discuss the subject of a lung transplant.

After New Year in 2003 all the tests were done and I was put on the list. My wait continued for seven weeks, and then the call came: ” We have lungs for you”. Lots of shattering thoughts passed through my mind when I locked the front door. ”Will I ever come home again?” The operation and rehabilitation went much better than I myself expected. Of course I wanted to get home, I wanted to live and so I did come home on leave after two and a half weeks. It was so gorgeous to arrive home and be able to walk, even if it was a bit wobbly, but I actually managed the whole flight of steps up to my front door.

Later on, when I got home permanently, the difference between how things were before the operation and now was huge. From only having had 16 % lung capacity and weighing 39 kg, I now have more normal figures for lung capacity and weight. Also, to be able to lie down without wheezing and whistling sounds in my air passages was quite new. It is so quiet that I can’t hear my own breathing.

It is just fantastic that someone had said yes to organ donation so that I was given a second chance at life. Not everyone has the opportunity of receiving such a gift. I know that someone has family and friends who are grieving at the same time as I have received new life. There are simply no words to describe my joy over life. I can do things that did not even exist in my wildest imagination ten years ago. I have now had my new lungs for ten years and by sharing my experiences I hope to help the family of my donor as well as future donors.