ALPHA1 ANTITRYPSIN DEFICIENCY-TALKING ABOUT MY LUNGDISEASE PART1

ALPHA1 ANTITRYPSIN DEFICIENCY-TALKING ABOUT MY  LUNGDISEASE PART1

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. alpha1 antitrypsin deficiency

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.alpha1 antitrypsin deficiency

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.alpha1 antitrypsin deficiency

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.alpha1 antitrypsin deficiency

The second part of this story about Alpha1 antitrypsin deficiency is on Friday.

If you have any questions, feel free to ask!

This is where I link up!

42 Comments

  1. August 22, 2017 / 12:30 am

    Wow, Nancy…this is incredible!
    I’m so glad you’re sharing this with us, because the more we know, the better we can relate!!
    XOXO
    Jodie
    http://www.jtouchofstyle.com

    • August 22, 2017 / 12:43 pm

      Thank you Jodie! I appreciate that!

  2. August 22, 2017 / 7:59 am

    I wasn’t sure if I should read this now or later but once I started I couldn’t stop. I can imagine it was difficult to write this as it makes it more real and you realise how much you suffer. It’s terrible, Nancy, and I am so sorry for your fears and suffering. You seem to be a positive person which helps a lot. I hope this day be a better one.
    xo Yvonne
    http://www.aproposh.com

    • August 22, 2017 / 12:45 pm

      Dont feel sorry, I am a happy person! But your kind words mean a lot to me!

  3. August 22, 2017 / 8:07 am

    Nice jeans and a nice white shirt are the most perfect casual outfit! It’s great to see you wearing such an outfit. Although I am accustomed to your precious skirts, your wonderful dresses and that I love. That’s why I love to see you in your beautiful vichy dress, with the beautiful ruffle at the neckline. Or with your beautiful skirt striped, in full sun and with one of those hairstyles so daring and beautiful.

    • August 22, 2017 / 12:45 pm

      Thank you Josep!

  4. August 22, 2017 / 8:51 am

    Hi Nancy, you looks wonderful, this skirt ist great an all your Outfits are beautiful!
    Have a nice day and greetings from Austria
    Nicole
    http://alnisfescherblog.com

    • August 22, 2017 / 12:45 pm

      Thank you!

  5. August 22, 2017 / 9:45 am

    Oh boy, you have been through a lot! Sharing this will help everyone understand the illness more I think. I’m impressed with your optimistic outlook on life through your blog ♡

    • August 22, 2017 / 12:46 pm

      Thank you! That lifts me up!

  6. August 22, 2017 / 12:04 pm

    Dat is een hoop doorstaan zeg…
    Maar ik vind je gestreepte rok erg leuk en hou altijd van je positiviteit op je blogs<3

    • August 22, 2017 / 12:46 pm

      Dat vind ik leuk! Positiviteit is ook heel erg belangrijk!

  7. August 22, 2017 / 1:20 pm

    Nancy, thank you so much for sharing your story. It is so helpful to so many people to know they are never alone in their struggles. Your positive attitude and sense of humor even while facing an illness such as yours is so refreshing and inspiring. While I cannot relate to the daily struggle with lung disease, I can totally relate to the horror of anxiety and panic attacks. And learning how to cope with that is so important. I am so glad that your doctor sent you to a group that was helpful for all of this. I admire your strength and courage every day, my friend! Keep being fabulous!

    Shelbee
    http://www.shelbeeontheedge.com

    • August 22, 2017 / 1:30 pm

      Oh, it s so fantastic to read this! Thank you dear Shelbee, I want to hugh you!

  8. August 22, 2017 / 3:54 pm

    That is quite the story girl! Keep positive, stay strong.

  9. August 22, 2017 / 4:43 pm

    Thank you so much for sharing your story, Nancy- you are so brave! I am excited to read Friday and find out how you were able to cope!

    -Ashley
    Le Stylo Rouge

    • August 22, 2017 / 7:30 pm

      Oh that is really nice of you to say! Thank you Ashley!

  10. August 22, 2017 / 5:49 pm

    Thank you for sharing your story with us Nancy. I’ve always admired your positive attitude and beautiful smile – and now even more!

    • August 22, 2017 / 7:31 pm

      Thank you so much!!

  11. August 22, 2017 / 6:44 pm

    Nancy,
    I am so glad you posted,this story ! I have been wondering. I feel for you and admire your strength. It is also good to share, your followers want to know, we are friends.
    I am glad that going, to rehabilitation worked so well and gave you a means of ongoing emotional support as well,as information….both so necessary for chronic disease.
    I also have a chronic autoimmune disease. I have mentioned it, but may write about it as you did.. a different story, but a window into who we are.
    Looking forward to part 2.
    You are so inspiring,
    X, Elle
    http://www.theellediaries.com/blog/

    • August 22, 2017 / 7:33 pm

      Thank you Elle! People with chronic dissease van have many likewise problems! And you are right , this is who I am. I am always writing very honest, don t pretend to be someone I am not. And I felt that this should belong on my blog too!

  12. August 22, 2017 / 7:13 pm

    Ik ben even sprakeloos. En ik ben ook blij dat de dokter zo streng was tegen jou. Je bent een te mooi mens… zorg goed voor jezelf! ❤️

    • August 22, 2017 / 7:34 pm

      Dankjewel lieverd dat doe ik zeker!

  13. August 22, 2017 / 7:58 pm

    Nancy, found your blog through Jess’s linkup. I am totally smitten with that black and white gingham dress!

    You are one brave lady. I have battled panic disorder since I was a teenager. So I know how debilitating it can be, But to suffer that AND chronic lung disease at the same time has to be extremely difficult. I can certainly appreciate how challenging this must be for you.

    So glad to know you are getting the support you need. Your amazing positive attitude will surely help.

    From across the ocean I am sending healing thoughts your way!

    Theresa

    • August 22, 2017 / 8:15 pm

      I really appreciate it that you comment on my post! That is so very kind of you! The panic attacks came from not expressing my feelings about my disease. I told no one about my disease until I couldn’t work anymore. My family and friends knew about it, but not that it was that serious.

  14. August 23, 2017 / 9:37 am

    Oh bless you Nancy – you come across in your blog so positive and relaxed, well that just goes to show what a determined person you are.
    I suppose we all have some sort of problem in our private life, but don’t always chose to share it. Well done for sharing your story Nancy, I hope blogging is a positive output for your illness. xx
    Jacqui
    http://www.mummabstylish.com

    • August 23, 2017 / 11:16 am

      It is! Thank you for your kind words Jackie!

  15. August 23, 2017 / 2:33 pm

    You always seem so happy and funny despite your illness…and you manage to look amazing while hooked up to oxygen! I have a hereditary kidney disease which will get progressively worse. My mum was diagnosed in her 60s and is now on dialysis. The consultant thinks at 74 she is too old for a transplant, and she would need another big operation first to reverse a stoma anyway. My brother has the disease too, but we don’t know yet if our children are affected. When I was diagnosed I was told I only have one kidney, which is not related to the disease, but a birth defect, so I don’t know how that will work out. For now I’m just enjoying life (a little bit head in the sand) but I exercise and eat healthily, that’s all I can do…and drink lots of water! Looking forward to reading the next part of your story Nancy 🙂

    Emma xxx
    http://www.style-splash.com

    • August 23, 2017 / 3:41 pm

      Oh dear, so you have to have a transplant too one day? They’re is nothing wrong with a little head in the sand stabbing. The time will tell when you have to get your head out of it!

  16. August 23, 2017 / 5:06 pm

    Nancy you are such a tough woman! You are a great role model for other people. Thanks for sharing your incredible story with us.
    Much love and a big hug, Tina

    • August 23, 2017 / 5:49 pm

      Wow! Thank you very much Tina!

  17. August 23, 2017 / 9:37 pm

    I knew you had lung disease and often wondered how you were doing day to day. Thanks for sharing parts of your journey. I know I can’t possibly know and fully understand much of what you’ve been through and are going through. Your story also shows that a blog only shows a small part of our lives, and there is so much more going on “behind the scenes,” and not all of it is pretty… I think this part is true for most of us…

    I admire your positive, fun attitude on your blog and on IG! It’s always a joy to visit!

    • August 23, 2017 / 9:45 pm

      I thought it was about time to tell this. It’s who I am now, although I still have got to get used to it. Thank you for your words. It means a lot to me! A whole lot!

  18. August 23, 2017 / 10:15 pm

    I think looks are deceiving, no one would believe what you’ve been through and continue to deal with because you look so healthy. Thank you for sharing your story because it reminds me that we’re all dealing with something and we may never know unless we take the time to ask and know a person, we need to hear their story. I am looking forward to the second part and applaud your courage in sharing.
    xo,
    Kellyann

    • August 23, 2017 / 10:27 pm

      Oh thank you so much! I appreciate it!

  19. August 24, 2017 / 9:55 am

    Beautiful post and love the photographs. Wow! You are one brave lady.

    • August 24, 2017 / 9:04 pm

      Thank you very much!

  20. August 24, 2017 / 4:09 pm

    Wow Nancy! I would have never known that this is something you deal with because you always look so amazing. I am sorry you are dealing with this serious health issue. Thank you for sharing this with us, you are very brave!

    xx, Elise
    http://www.sparkelandslippers.blogspot.com

    • August 24, 2017 / 9:05 pm

      Thank you, I appreciate your kind comment!

  21. August 24, 2017 / 5:57 pm

    Thank you for sharing this Nancy.
    Such a personal story that will resonate with many people.
    Not necessarily for the same condition, but for each of our own personal ‘issues’… whether large or small.
    Sharing your story is brave and generous.
    Thank you for linking it to #fakeituntilyoumakeit.
    XXX
    Samantha
    http://www.fakefabulous.com

    • August 24, 2017 / 9:06 pm

      Thank you very much!

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