Alpha1 Antitrypsin Deficiency is a rare 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.
I already published this post before. But because I had to start all over with my blog, it’s gone. I wanted to link this story in my about page as it is such a important part in my life. So it is possible that you already have read this!
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 ) And also Lieske had posted a piece of my story on her 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 lung disease. 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.
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 lung doctor with the message: if I can’t reassure you, the hospital will have to. After a number of tests I had to see the lung doctor. 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 lung doctor 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 stressful( 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 lung doctor until he noticed in 2010 that it’s gotten worse. I did not visit him for two years after 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. Didn’t even know that that was possible. 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 lung doctor 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 divided 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 panic feelings. And here were all other people with lung disease 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.
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 with Alpha1 antitrypsin deficiency
I can’t work! That still is quite a thing. Can’t walk far, if I’ve walked for 100 meters I’m already breathless. I can’t do many things in one day. If I do to much it exhaust me real quick. My lung content is 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 using a wheelchair, always carry 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!
You have such a positive outlook Nancy….I think that’s why you are doing so well. Getting wiser in life is only due to dealing with problems I think, and you have really shown how amazing you are!
XOXO
Jodie
http://www.jtouchofstyle.com
Author
Thank you very much Jodie!
As a fairly new reader to your blog, I did not know any of this about you, Nancy! You are very brave to share it – it’s easier to just do the blog pictures and look perfect, and not tell people. But I think it is important for us bloggers to show the “real” us, and health issues are part of that. I have anxiety too – I manage it, but it’s there, always lurking.
Hugs to you for being such an awesome role model.
Author
I agree, this is also me and I want my blog to be genuin. Thanks Sheila!
Nancy I have a whole new appreciation for what you deal with each day since my dad has become ill. It’s not easy and I applaud your attitude and strength to keep finding joy. You are amazing!
xo,
Kellyann
Author
I know! Thank you very much Kellyann!
Just like I did when I first read your account, I am applauding your strength to deal with your illness, even if it did take time for you to come to terms with it. Who wouldn’t, I wonder. Simply put: I think you are amazing and I am very much in awe of your positive attitude. Hugest of hugs xxx
Author
That means a lot to me Ann!
Ik wist al wat van je aandoening af, maar nu ik het weer lees komt het toch weer binnen. Ik vind je zo’n geweldige vrouw! In eerste instantie was mij jouw aandoening nooit opgevallen, pas toen ik je in het echt ontmoette zag ik het pas ‘in tha face’.
Author
Haha, ja de meeste mensen zien het niet meteen. Zeker niet zonder de bril.
I’m glad you re-told the story of your illness as I never saw it the first time and now I understand better what life is like for you. I’m glad you found blogging as something you’re able to do…and wonderful Gerben!
xoxo Bettye
Author
Thank you Bettye!
Nancy, this made me tear up. You are an amazing person! What an incredibly hard journey you have made, but you and your partner have done it and will continue to do it. I have learned as well, that it is the little things in life that are the most important…the feel of the sun on our faces, the breeze in our hair and the hand of our love’s in our own. Thank you for telling this story again! – Amy
http://stylingrannymama.com/
Author
Thank you very much Amy.
This must have been so hard for you to write, again. What a courageous woman you are. I have severe anaemia from lung damage from a violent marriage, many years ago, and have experienced being close to death from it. Which is actually nothing compared to what you have been through.
Who can understand how hard it is when one cannot breathe? When you have to rest a lot. When life can be hard. But, how wonderful, you have recreated your life. I am in awe of your fabulousness.
Author
Thank you very much, I appreciate that!
Oh wow, I had no idea! thanks for sharing your story, I am sure it will give encouragement to others who may be facing the same thing! You’re so strong, and it’s great you’ve found a routine and treatment that works for you 🙂
Hope that you are having a good week so far! Our heatwave has finally ended which is a relief! 🙂
Away From The Blue Blog
Author
Thank you very much Mica.
Wished we had a heatwave here! haha.
Oh Nancy, how strong you are. I absolutely admire you. The way you handle your illness, the way you have made another meaningful life for yourself, the thankfulness you express towards people around you (Gerben first of all) are all so real and inspirational. You know that I admire you, your resilience and your persistence. I just wanted it to write down here too. Some things you just can say often enough (or read often enough)?. Lots of love, Lieske
Author
Thank you so much dearest Lieske!
Wauw wat heb jij een zware tijd achter de rug gehad! Gek dat je lichaam je ergste vijand kan zijn. Ik had ooit ook een periode dat ik met zuurstof de deur uit moest. Deed ik natuurlijk niet waardoor mijn dagen steeds korter werden en eenmaal thuis instortte. Gelukkig is dat deel van mijn leven voorbij, voor nu?, maar anders lijkt die bril mij ook wel wat!
Author
Die is echt een uitkomst hoor want zonder de bril zou ik de deur niet meer uitgaan. Echt vreselijk vond ik dat. dankjewel voor je reactie!
I guess when there is no choice You have to get on with it. Although you had so many panic attacks and despair, you carried on and this is a sign of determination and strength. Gerben seems to be very supportive and selfless and I’m happy you have him as your partner. Stay strong!
love Yvonne
Author
Thank you very much dear Yvonne!
Great positive outlook Nancy. Thanks for sharing with us. I feel I’ve learnt a lot. And I have so much respect for you.
Author
Thank you very much Gail, I appreciate that a lot!
You are so inspiring and strong. I am in awe at how positive you are and I’m so happy your partner is SO very supportive and loving to you through all of this… I am sure it is tiring on the both of you. And you are still living life to its fullest! I had never heard of this chronic disease, thanks for sharing so much information on it.
Carrie
curlycraftymom.com
Author
Thank you for reading it Carrie!
I finally got to read this all the way through. Nancy, you are a complete inspiration. I had never heard of this disease and I feel like you’ve taught me a lot here. Thank you so much for sharing this!
~Melissa xx
Nancy you are brave and it is wonderful you are such a positive person. You are an inspiration for other people with chronic desease.
A big hug, Tina
I never knew what you have been through Nancy. You are such an inspiration and so strong to go through this and such a positive outlook. Thank you for sharing your post and helping others too.
Author
Thank you very much Claire, that is very kind of you!
Liefste Nancy, dank je wel for sharing your story. I love you. You come across as such an lively person. Your illness is not visible at all. And I am so glad that you are able to laugh again.
I got some bad allergies and they started with coughing. It would not stop. So I can a tad relate to how awful it must have felt.
This is one of the major reasons we holiday by the sea. After one week being exposed to the rough North Sea my lungs recover and I can breath much better.
Thank you again for sharing. And all the best of course. I suppose it is your living-room you are standing in? May I say how much I adore the interior design? Have you ever done any posts about it? xxxx Dikke kusjie. Sabina
Author
Oh thank you so much dearest Sabina! I know! When we are in the Uk we always stay by the sea and that feels so much better! Your comment is so lovely, that really puts a smile on my face. Actually I have thought about doing a post about my interior. It’s all white. Perhaps I will.
This is such a wonderful read dear. So heart-warming. Love how strong and positive you are Nancy. Wishing you all the best!
Jessica | notjessfashion.com
Author
Thank you very much Jessica! That is very kind of you!
You look amazing! I’m sure this is such hard work for you every day, but you’re very inspiring to everyone, especially anyone suffering the same disease. Thank you so much for sharing your story – keep doing what you do best – blogging. Take care of yourself, I like keep reading Nancy. Thanks for joining the #chicandstylish #linkup. Jacqui Mummabstylish
Author
Thank you very much Jacqui!
Hi Nancy,
I visited your site after seeing the link on Tanias blog. I have recently been diagnosed with a chronic pain illness and it’s such a struggle. I barely read Tanias blog anymore because lately fashion and my “old” life of caring how I look seem so far away. Just getting up each day is now a struggle.
So much of what you wrote about sounded so familiar to me. The anxiety, the fear of night time, the change in relationships, the difficulty accepting life as it once was and is no more.
I have just started down this scary road and I guess I just wanted to say thank you. Thank you for sharing your story and for being an inspiration. I’m trying to find my way in this scary new life and somehow I found my way to your blog, to your story. And your words truly touched me.
Thank you.
Author
Oh thank you very much dear Jodi. I am sorry that you have to walk this road. But remember, you get nothing on your plate you can’t handle. It is a hard and long road, but try to except things as they are and listen to good advice from professionals. That makes the journey less long. And you will find a way!! Trust in that!
My father had this and was on oxygen. I sympathize with what you are going through. My God give you peace and comfort.
Author
Thank you very much.
I’m so glad you linked this to today’s post because I had no idea you even had a lung disorder. I’ve always been impressed with how much you exercise and seem to live life to it’s fullest and now I’m just blown away. Thank you so much for sharing your difficult story with us.
Author
Oh thank you very much, I appreciate that a lot!
I HAVE A LOT OF THE SAME FEELINGS AND SYMPTOMS as you know because I believe you read my blog post.
YOU LOOK GREAT………..and the BLOG is worth so MUCH to have that CONNECTION TO OTHERS.
KEEP DOING WHAT YOUR DOING!
XXX
Author
Thanks , Yes I read about that! And yes the connection with other bloggers is everything!
Thank you for posting this link to your story (new 3D printed glasses post). I had heard of this illness having been in the medical profession for about 15 years (lab technologist), but never knew anyone personally with the genetic deficiency or any of the details about how the illness behaves. I have great admiration for your positive attitude. Dealing with a chronic illness myself (but one that is not so life-threatening) I, too, try to maintain a positive outlook, if for no other reason. being obsessed and sad does not help at all. And yet so many people do struggle.
I applaud your health system for having these rehabilitation classes to help you cope. Honestly, such classes would be beyond the ability of most to pay for here. I absolutely hate the cruelty of the American healthcare system and its focus on the almighty dollar. But that is another discussion.
Michelle
https://mybijoulifeonline.com
Author
Indeed, I never understood the American way, it’s horrible. But perhaps Biden brings back Obama care? The rehab really saved my life, after that I completely changed! I was really lucky!
Thanks for posting about your experience. My husband is struggling with this here in the United States. He only discovered that he had it in his 50s after insisting on seeing a specialist. So many people don’t know they have this disease! I wish that early testing was a thing so at least people would be able to limit the damage as much as possible when they are young. Best of luck with this!
Author
Thank you for your comment. I am very sorry to hear about your husband. It is a awful disease. Here in the Netherlands they test baby’s more often now then they did 50 years ago. Good luck for the both of you!
In 2020 I was diagnosed with AAD. Dr’s thought I had sleep apnea, I do not. I cannot sleep unless I take a sleeping pill. Waiting to be scheduled for an appointment with the lungs guy’s. I had a heart attack 2021. Fixed all that. You exude positivity in your writing. I’m not looking forward to this path I’ll be on. Nothing can be done, just make the best out of what I’ve been given. I’ll find your blog to follow you on your journey. Thank you for being brave & writing your stores.
Author
Hi Alpha1 sister! It’s a tough road we have to ,,walk,, but as you say, make the best of it. Can you get a transplantation?