Alpha1 antitrypsin deficiency
Alpha1 antitrypsin deficiency is a heriditary lung disease. It is a deficiency, or lack, of a protein that makes the lining of your lungs. I don’t have this protein at all and therefore have the most serious form. This is a progressive disease and the only thing that can make me better is a transplantation. I am ,,beyond repair,, as my doctor says! Read here more about the disease in Dutch and English.
Okay, so I have decided to dedicate a post to my disease, alpha1 antitrypsin deficiency.( I told a bit about chronic disease on Nicole’s blog ) Or rather my disease and me. Not to gain understanding or compassion, absolutely not, but to give you an idea of what it means to live with a lungdisease. Not just being out of breath and what you can’t do anymore, but also the fears, the uncertainty, have to depend on others more and more, not feeling worthy, the changed relationships with the people around you. I think many people with severe chronic illness will recognize many of this. There is so much more than people see on the outside. Because it’s quite a long story, I’ll devided it over this week.
The start of a whole other life
When I was about 30 years old I started to notice that I couldn’t breath right, as if there was something blocked. I smoked, worked long hours in a cafe and didn’t do anything on sports. I started exercising but that didn’t help. On my 32nd I went to the doctor because I coughed a lot. And I had a feeling that something wasn’t good at all. A year and many visits later my doctor sent me to a pulmonologist with the message: if I can’t reassure you, the hospital will have to. After a number of tests I had to see the pulmonologist. I was told I had A.A.D( alpa1 antitrypsine deficiency) in the most serious form, a progressive disease, my lung capacity was 33%, if I didn’t quit smoking I would be in a wheelchair within five years and to have children was discouraged because I would not live to see them grow up. Bam! I was 33!
And how the years went on.
Gerben and I are not the people to dwell on the bad things in life. We accepted the fact and went on. My lung capacity became with medication 45%. Of course I had stopped smoking directly after the pulmonologist told me to. The years went on and every day I was confronted with my disease one way or the other, it’s in your head, every day, it’s extremely stressfull( like any other serious disease I think). And you can’t fight it, you’ll always loose. But life goes on, I worked full time, I regularly visited my pulmonologist until he noticed in 2010 that it’s gotten worse. I did not visit him for two years afther he said that…in Dutch we call that head in the sand stabbing. Then in February 2012, after much insistence from Gerben and my mother in law, I visited him again. He tolled me to report sick from work, because I was to sick to work. I didn’t and when I visit him in April again he told me to report sick or he wouldn’t do anything for me anymore. My work was everything for me, I get tears in my eyes when I write this. It’s harder to write this as I thought it would be. Nobody at work knew that I was sick. Only some family and good friends knew. I could always hide my illness at work because I was a manager. For example, if I was to exhausted I went on doing administration. And then I sat completely desperate at my desk(my desk was above the store), not knowing how to continue this. The last day at work I said goodbye to my working life in silence.
Then a new chapter in our life began.
Actually the biggest problems started then! I had lived for years on stress hormones. I didn’t even know that that was possible. I was totally exhausted and the first weeks at home I felt so much worse then when I worked. That came, I was told later, because now I felt how I was doing! The fact that I couldn’t work anymore was such a blow to me that I soon became burdened with fear and panic feelings. If you never experienced this, it’s hard to explain how it feels. Something happens in your head and you can’t stop it( you can, but I didn’t know how of course). And it makes you so very anxious. Almost everything triggered an anxiety feeling. When I listened to music, when it became dark, watching TV, many people, getting in my car, going somewhere. All that and much more, going to sleep was horrible. I quickly explained this to my pulmonologist because I new I could not solve this myself. He sent me to a psychologist at a rehabilitation center with the intention of rehabilitating me there. This was the best thing, at that time, that could happen to us. In April 2013 I started, 12 weeks internal, from Monday morning till Friday afternoon.
What did I learn during rehabilitation
I have rehabilitated in Dekkerswald. A rehabilitation center especially for lung patients. When you start you are devided into groups according to your ability. I was placed in the group that was the worst! And I thought I was one of the better ones. I was so ignorant. I started in an existing group of 15 people, you don’t start all at once so the group changes over time. There is a common living room and all the meals are together. You have your own bedroom. At first I thought it was fantastic to be there, I had been at home for almost a year and still had the pannic feelings. And here were all other people with lung dissease and all the same problems. We had a very structured program. A lot of sports, a lot of education, of course the psychologist and many other disciplines. Of course it wasn’t all fun. Because I was that ignorant, they made me really clear how bad my health was. I had a lot of sadness there too. I didn’t know how to go further, didn’t believe I would live for that long and that was such a horrible thought. But I also learned so very much of how to cope with alpha1 antitrypsin deficiency. And the bond you get with the fellow rehabilitaters is very special. We still have contact with a group and see each other at least once a year.
The second part of this story about Alpha1 antitrypsin deficiency is on Friday.
If you have any questions, feel free to ask!