Alpha1 antitrypsin deficiency
Alpha1 antitrypsin deficiency is a heriditary lung disease. It is a deficiency, or lack, of a protein that makes a protective layer for 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. Read here more about the disease in Dutch and English.
Okay, so I have decided to dedicate a post to my disease. 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 have devided it over this week. If you have missed the first part, you can read it here.
And how to live now with alpha1 antitrypsin deficiency?
After the rehabilitation, I had placed valves in a hospital in Groningen to get more lung content. This was a trial. Unfortunately this didn’t work for me because they closed off one half of one lung, but the upper half stretched out. But I had a lot less trouble coughing up and thus also less infections. My lungs were constantly infected. I could laugh again like I used to do. That sounds crazy, I laugh out loud..real loud. And I could not do that for years anymore because laughing made me cough very badly.
The most important thing to do after rehabilitation is to practice what you have learnt. That is hard. I have always been a very busy person. Every minute of the day was filled up. And now I had to rest a lot between things to do and terminate appointments if there were to many. And do things slowly! Also I was told that I had to use oxygen 24/7. Another huge fight. I really thought this was terrible because I could not hide anymore that I wasn’t a healthy person. I’ve always seen myself as a strong person, always been a manager in my working life. And now people would see me as a sick person, a patient. It cost me more than two years to get used to seeing myself with oxygen. And I still have moments that the stupid eternal tube in my house freaks me out and that I hate to always have to carry that stupid concentrator when leaving my house. But I can handle it better now. Also because I could buy oxygen glasses last year, making the tubes in your face less visible. These glasses are only available in America. The oxygen passes through the frame. At home I don’t wear the glasses because I don’t need glasses.(hum) It also took me a few years to find a meaningful and nice fulfilment to my days. I now fitness four times a week, I do volunteer work, and I blog! And that really helped me to get a little more selfconfidence back again.
What can I do, what can’t I do.
I can’t work! I think that still is quite a thing. I can’t walk far, if I’ve walked for 100 meters I’m already breathless. I can’t do many things in one day, I get tired real quick. I now have a lung content of about 24 %. I have to be very careful with getting sick. If I get the flu I can end up on the IC. Only when I am sitting I am not breathless, I am always out of breath when I do things. Taking pictures for the blog is tiring, hence we always make them home and not search for a nice location.
But much more important is what I can do! The disease also brought me some good things. I have become calmer, more accessible. I have learned to appreciate the little things in life and enjoy things better. When the doctors told me: you now don’t have to do anything just to enjoy, it sounded terrible. Now I’m thinking: the sun is shining, let’s go outside and do nothing. And I love to do sports, I can go out for dinner, shopping, visit museums, go on a holiday. Many things have to be adjusted, such as taking a wheelchair, always take the oxygen concentrator when we stay overnight, but it’s all possible.
And last but certainly not least, the partner! It’s all very difficult for partners too, because all the attention goes out to the,, patient”. And the partner has to do more and more in and around the house. They have much less time for themselves and can’t be active on let’s say for example holidays, because the,, patient” can’t be that active. But I am lucky to have a fantastic partner who supports me in everything and better understands then anybody how to handle me and alpha1 antitrypsin deficiency. We have a lot of fun together and that is what is most important!
If you have any questions about my illness, please feel free to ask. I will be happy to answer them for you.
This is where I link up!
My favorite of last week is: Debbie of Fashion Fairy Dust
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