ALPHA1 ANTITRYPSIN DEFICIENCY- PART2 & FANCY FRIDAY LINKUP

ALPHA1 ANTITRYPSIN DEFICIENCY- PART2 & FANCY FRIDAY LINKUP

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.alpha1 antitrypsin deficiency

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.alpha1 antitrypsin deficiency

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.alpha1 antitrypsine deficience

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!alpha1 antitrypsin deficiency

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 DustAlpha-1 antitrypsin deficiency

And now it’s time for the start of the Fancy Friday linkup party. Every Friday you can show yourself and meet other bloggers. Even if you’re not a blogger you can join! You can also grab a button to support my linkup party if you like. I  would appreciate it very much!

Nancy's Fashion Style

This is how it works:

Follow your host on Facebook, Instagram and Twitter.

Link up your blog below.

Share the love by visiting other blogs in the linkup party.

Share a link to Nancy’s Fashion Style on your post or give a little shout out on social media.

By joining the Fancy Friday party, you agree to receive a weekly reminder email for the linkup.


84 Comments

  1. August 25, 2017 / 9:19 am

    Nancy – thanks for sharing your story. You are an inspiration. No-one would ever know looking at your lovely photos that you have such a debilitating illness.

    • August 25, 2017 / 9:20 am

      Thank you Gail!

  2. August 25, 2017 / 12:42 pm

    I’m so sorry you’re having to go through all this, Nancy. It must be so hard but I’m delighted to see you’re still happy and smiling 🙂 Have you ever tried Pranayama (breathing techniques in yoga) – if you haven’t looked into it, I would recommend you find out a little more about it. It just might help, if even a little bit.
    Suzy x
    Suzy Turner at Yogadocious

    • August 25, 2017 / 1:28 pm

      Not in yoga, but I did get breathing techniques. Thank you so much!

  3. August 25, 2017 / 1:13 pm

    Thank you for being so brave and sharing your story! You are so beautiful inside and out. You have reminded me to rejoice in the little things. I will pray for you and so happy that you have such a loving partner to be by your side.

    http://www.kathrineeldridge.com

    • August 25, 2017 / 1:31 pm

      Me too! thank you for your kind words!

  4. August 25, 2017 / 1:20 pm

    thank you so much for sharing this with us. You’re attitude is wonderful.

    • August 25, 2017 / 1:32 pm

      Thank you Pam!

  5. jaymieashcraft
    August 25, 2017 / 1:37 pm

    So glad you shared this with us!
    Jaymie

    • August 25, 2017 / 2:04 pm

      Thank you Jaymie!

  6. August 25, 2017 / 1:42 pm

    Nancy, you are so beautiful…inside and out. And so courageous. I am so happy that you learned ways to continue enjoying your life. And I am so glad that blogging is one of those ways. Otherwise, I would have never come to know you. And I feel so blessed to call you one of my best blogging friends! You amaze and inspire me every day with your dedication and your drive and your amazing style! We so often take our health for granted and it is important to remind ourselves to appreciate what we do have. Thank you for reminding me.

    Shelbee
    http://www.shelbeeontheedge.com

    • August 25, 2017 / 2:05 pm

      Ah, thank you! You are an fabulous blogging friend! But you are an amazing woman yourself! You also have to fight, and you are also brave and strong!

  7. August 25, 2017 / 2:41 pm

    Nancy, I wonder how many readers took a collective deep breath while reading your post. Thank you sharing, as I would never have known otherwise. I may have missed this detail, but are you on a transplant list?

    • August 25, 2017 / 2:47 pm

      No not yet Chrissy, every year, or when my health is getting worse sooner, I have to go to Utrecht. Then they examine me and deside wether I have to be on the list! Thank you dear!

  8. August 25, 2017 / 2:51 pm

    I would never know you had a serious illness like this based on your pictures. You seem to have so much energy! Thanks for sharing your story with us!

    • August 25, 2017 / 2:52 pm

      I pretend very well! Practised it for years!

  9. August 25, 2017 / 3:08 pm

    It’s incredible that you have such a positive outlook too, Nancy!
    Have a fabulous weekend, and this is a great reminder to be thankful for what we do have in life!
    XOXO
    Jodie
    http://www.jtouchofstyle.com

    • August 25, 2017 / 4:44 pm

      It is! When I was still working and ignored my dissease, I was always busy , stressed etc. We all have that, I see it around me, now I see it around me! Life is to short to take things for granted. Even if you live to be 100!

  10. August 25, 2017 / 3:31 pm

    Thanks for sharing your story. It is so important for all of us to understand that many are dealing with so much more than what we see in pictures. My mom and and two sisters (twins five years older than I) have advanced lung diseases and have been living on full time oxygen for several years. Watching them live with this has made me even more grateful for every breath of air I breath. Peace!
    Cheryl
    http://www.northwestmountainliving.com

    • August 25, 2017 / 4:45 pm

      Oh, have they got AAD too, or COPD?

  11. August 25, 2017 / 4:12 pm

    I think this is great that you’re sharing your story. I would never know from your photos that you had a serious illness. You’re beautiful and always look so full of energy. I love your positive thinking and we should all take time to appreciate the little things/moments in life.
    Rachael

    • August 25, 2017 / 4:45 pm

      Thank you Rachael! That is very kind!

    • August 25, 2017 / 4:46 pm

      Haha, thats great! Thank you love!

  12. August 25, 2017 / 4:50 pm

    I love that you shared this Nancy. I think that it is so important for us to share parts of ourselves like this so that others can see that there is far more to us than pretty outfit photos. We have lives, we have problems, we are just like everyone else. I know how hard it is to accept the changes you have had to make in regard to how you live your every day life; kudos to you for being positive about it! And thank you for the shout out my friend! xo
    Debbie
    http://www.fashionfairydust.com

    • August 25, 2017 / 6:26 pm

      My pleasure!
      Yes, you are right about all. Thank you very much!

  13. August 25, 2017 / 5:48 pm

    Oh wow, I had no idea! It’s great that you shared your story!

    • August 25, 2017 / 6:26 pm

      Thank you very much!

  14. August 25, 2017 / 5:50 pm

    Thank you for sharing your story Nancy. You are truly remarkable for your positive attitude. You’re absolutely right that we should always focus on what we can do, not what we can’t. It’s easy to take our health for granted but nobody knows what’s around the corner. We need to enjoy life and appreciate the good things whenever possible.

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

    • August 25, 2017 / 6:27 pm

      We sure do! Enjoy! Live is fantastic, even in hard times.

  15. August 25, 2017 / 6:08 pm

    Hi Nancy,
    Thank you so much for sharing your story. Looking at your photos I would have never guessed you are battling a disease as you always look beautiful and stylish and your smile is full of energy and life. I am glad you have found peace in your situation and are living your life fully with your wonderful partner. I wish you the best of luck!
    Nora

    • August 25, 2017 / 6:27 pm

      Thank you very much Nora! I appreciate your kind words!

  16. August 25, 2017 / 9:32 pm

    Nancy, thank you for sharing your story with us. I was encouraged to hear how you choose to focus on the positive and not let this health condition hold you back from living life.

    • August 25, 2017 / 10:13 pm

      Thank you Jennie!

  17. August 26, 2017 / 12:35 am

    Thank you for sharing your story, you have such a positive outlook!!
    Thanks for hosting

    Enjoy your weekend!

    • August 26, 2017 / 12:54 pm

      Thank you Karren!

  18. August 26, 2017 / 12:59 am

    Thank you for sharing about your health, Nancy. I have wondered about your illness, since you’ve mentioned it with regards to travel.

    I really admire you for making your life the fullest possible, with your wonderful blog for example. And I am happy to hear that you have a wonderful partner. It seems like you have had some enormous challenges with your illness. This post is touching and inspiring.
    xo, janea
    theSTYLEtti

    • August 26, 2017 / 12:55 pm

      Thank you so much Janea!

  19. August 26, 2017 / 4:27 am

    You look amazing, Nancy. Love your photos! Great styling as always!
    Thank you so much for sharing!
    Have a fabulous
    weekend ahead!
    Much love, Len
    http://www.lenparent.com
    XO

    • August 26, 2017 / 7:58 am

      Styling? If you don t want to read, then just wish me a good weekend dear.

    • August 26, 2017 / 12:55 pm

      Thank you Idu!

  20. August 26, 2017 / 11:51 am

    Nancy , thank you for sharing your story and explaining about your condition and how it affects the way you live your life . So pleased you have a supportive partner to share your journey.

  21. August 26, 2017 / 4:16 pm

    Thanks for sharing more about how you’ve learned to live with your disease. I think living in the moment and being grateful for the little things is so important for all of us!

    Thanks for the link up & I hope you are having a great weekend!

    • August 26, 2017 / 4:24 pm

      It is! We live far to fast and stressed out! Thank you Andrea, enjoy your weekend!

  22. August 26, 2017 / 5:10 pm

    Nancy, thank you so much for giving us these informative posts about your disease. I knew nothing about it before now, so I am thankful you shared this. You are a strong and beautiful woman. What an inspiration to all of us women, both those who struggle with long term illnesses and those who don’t. – Amy
    http://stylingrannymama.com/

    • August 26, 2017 / 10:54 pm

      Thank you Amy! You are very kind!

  23. August 26, 2017 / 5:27 pm

    I truly admire you opening up and sharing your story here! You determination and positive outlook are very inpsiring!
    Gina || On the Daily Express

    • August 26, 2017 / 11:23 pm

      Thank you Gina!

  24. August 26, 2017 / 5:38 pm

    Dear Nancy,
    I am so sorry to hear about your illness – it must be so hard and I feel for you very much. Stay strong and beautiful as you are and I really hope that one day they can truly cure you. It is really wonderful meeting you through blogging – keep going you fabulous woman!

    xoxo Yvonne
    http://www.funkyforty.com

    • August 26, 2017 / 10:55 pm

      Thank you very much Yvonne!

  25. August 26, 2017 / 7:03 pm

    Saw this link up in another blog. Praying for you and sending positive thoughts for you.

    Thanks for hosting and have a wonderful week

    • August 26, 2017 / 11:22 pm

      Thank you very much!

  26. August 26, 2017 / 7:17 pm

    I’ve just read both of your post and am really touched by your story. Like most people, I’d no idea you were ill, let alone that you were suffering such a severe illness. You are such a positive person – which I know didn’t happen overnight – and you are so brave! I’m glad to read that you continue to enjoy life and that you don’t allow your illness to overshadow your happiness. You are an inspiration to us all. xxx

    • August 26, 2017 / 11:21 pm

      Thank you Ann!

  27. August 26, 2017 / 7:29 pm

    Nancy
    Thank you for sharing. I have quite the admiration, as I know that it is hard dealing with an illness all of the time. I too find that having a supportive loving husband or partner, is very helpful in dealing with the emotions that come with this. YOu are a lovely person, inspirring as well.
    take care,
    Jess
    http://www.elegantlydressedandstylish.com

    • August 26, 2017 / 11:21 pm

      Thank you very much Jess!

  28. August 26, 2017 / 8:58 pm

    I love the last picture. What a great couple.
    Thanks for this post. Enjoy your weekend, Nancy!

    • August 26, 2017 / 11:22 pm

      Thank you Tina!

  29. August 26, 2017 / 9:32 pm

    Goh zeg, wat een ingrijpend verhaal vertel je ons. Kun je nagaan: wij zien altijd vrolijke outfit foto’s, terwijl dit voor jou een hele onderneming is. Daarnaast zie je er gewoon heel fris uit! Onvoorstelbaar. Daarom ook alle respect voor jouw positiviteit. En wat heerlijk dat je zo’n fijne man hebt. Je hebt met ziekte echt een sterk persoon naast je nodig. Dat maakt Het allemaal net iets draaglijker.. Xx

    • August 26, 2017 / 11:23 pm

      Dankjewel!

  30. August 27, 2017 / 4:43 am

    I had no idea about your health condition Nancy and terribly sorry to hear about it. On a positive side I must say that you come as a very brave, strong and positive person who knows how to handle things calmly and without too much fuss about it.

    It is so important to have someone by your side who loves and cares for you.
    https://lookingfabulousat50.blogspot.com.au

    • August 27, 2017 / 9:16 am

      Well I can be really stressed too! Haha, I still want to do to much! Thank you Anna!

  31. August 27, 2017 / 10:21 am

    Wat mooi dat je dit hier deelt! Ik vind het een krachtig verhaal en ben erg blij dat je nu meer kunt doen. Zeker niet af te lezen van je blog, dat je tegen een ziekte vecht. Ik heb daar zeker bewondering voor aangezien je positief bent en zo te zien geniet van elke dag<3

    • August 27, 2017 / 10:24 am

      Dankjewel! Dat is lief van je!

  32. August 27, 2017 / 6:45 pm

    thank you so much for sharing this. I have never heard of this disease before. Thanks for joining my linkup!!

    • August 27, 2017 / 8:05 pm

      Thank you!

  33. August 27, 2017 / 10:00 pm

    You truly are an inspiration.

    I really admire people that are seriously ill that still manage to squeeze joy out of life.

    Kudos to you and your partner for pushing onward.

    bisous
    Suzanne

    • August 27, 2017 / 10:04 pm

      Thank you very much Suzanne!

  34. August 28, 2017 / 10:31 am

    You are amazing Nancy, thanks for sharing your story. You know what I admire the most that you are so strong and you really look on he positive side of life, also it seems like you have the perfect partner and that you are very happy and in love. Hope you have a lovely start to your week. Gemma x

    • August 28, 2017 / 11:27 am

      Those are very kind words Gemma. I appreciate it a lot! Thank you

  35. August 28, 2017 / 12:03 pm

    Thanks for sharing your story. I feel like I know you a little bit more now.

    I used to work with Cystic Fibrosis patients in hospital several of whom were on the waiting list for heart lung transplants.

    Oh and by the way I know this wasn’t a post about your fashion but is a bout your medical condition but I just need to add that I love your black and white gingham top.

    Ingrid
    http://www.fabulousandfunlife.blogspot.com.au

    • August 28, 2017 / 1:09 pm

      Haha, you are alowed to wat what you want! But thank you, so you know what we have to fight against!

  36. August 28, 2017 / 3:55 pm

    I am so sorry to hear about your illness, Nancy! SO happy to see you fighting and smiling! You are such an inspiration! Perhaps Yoga can help a bit – they have tons of breathing techniques! Sending hugs!
    Happy Monday, babe!
    xoxo, Vanessa
    http://www.WhatWouldVWear.com

    • August 28, 2017 / 6:07 pm

      Thank you very much for your kind words!

    • August 28, 2017 / 10:47 pm

      Thank you!

  37. August 29, 2017 / 7:26 am

    Avery inspiring post and I’m grateful that you’ve had the courage to share your story. I’m glad to have gotten a chance to meet you via blogging.

    Rena
    http://www.finewhateverblog.com

    • August 29, 2017 / 8:37 am

      I feel honored! Thank you Rena!

  38. August 29, 2017 / 7:24 pm

    Wow, I’ve never even heard of this! There are so many things that can go wrong with the human body, sometimes it seems amazing that *any* of us are walking around unaided!

    I can appreciate the not wanting to appear sick – my cancer diagnosis earlier this year was such a shock to me, but other than after surgery and during treatments, I have not FELT sick, so I could sort of hide it from the world. But when my hair went…pretty hard to hide that. Now I feel like I LOOK sick. And I don’t like that.

    I’m glad you shared your story – it’s good for people to know they are not the only ones who are going through something like this.

    Bettye
    https://fashionschlub.com

    • August 29, 2017 / 8:40 pm

      Oh no, we are certainly not alone. But you have to go to a very difficult period to! And to lose your hair must be awful! I hope you will recover real soon. And thank you for sharing your story!

  39. September 2, 2017 / 2:27 am

    This sounds like a lot to deal with, but it sounds like you’re not letting it hold you back.
    Thanks for linking up to #AnythingGoes 🙂
    Debbie

    • September 2, 2017 / 9:18 am

      Thank you!

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