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Bronchiectasis and Primary cilary dyskensia

Posted , 7 users are following.

laura11595
laura11595

Hi all, 

I am 27 years old and have been diognosed with Bronchiectasis and primary cilary  dyskensia a couple of years back. I have never had the opportunity to speak to someone with both of these conditions!! 

I am finding PCD a real struggle to live with and I try to be a positive person but sometimes this gets the better of me 😐

Majority of my treatment at the moment is iv antibiotics which is great but only a temporary fix before another infection comes back. 

If anyone on here has both of these conditions, would you have any tips for me? 

Laura 

0 likes, 9 replies

9 Replies

  • suzanne_1984
    suzanne_1984 laura11595

    Posted

    Hi there I currently have both had bronchiectisis since 15 diagnosed with pcd at 18. I struggle with both and I’m 34. Currently in hospital with pneumonia 3rd time this year x
    • retirednana
      retirednana suzanne_1984

      Posted

      Dear Suzanne 1984,

      I just shared this with another young person: I will share the same thing with you that I wrote her.   I wish I had someone to tell me back then what I’m going to tell you now:  I am 62.  My whole life I have suffered infections and weird illnesses (including BX)  I had pneumonia 7 times.  Just last year I was finally diagnosed with the problem that has caused EVERYTHING.  A simple but expensive blood test (which my insurance paid for) showed I have Immunodeficiency Disease.  Have your doctor check you for it; and this is IMPORTANT:  they need to break it down to subclasses.  As a “whole” your Immune system may show normal range, but your immune system has different subclasses that “defend” certain parts of your body.  All my subclasses were within normal range EXCEPT subclass 2.  It was extremely abnormally low.  It defends the lungs and ears,nose,throat, sinus, teeth, brain, eyes.

      I am now seeing a Hematologist who is setting up treatments whereby healthy immune donor cells are infused into my body.  I’m hoping to know what it’s like for the first time ever what a normal life without constant illness is like!

      Don’t forget to have your blood checked.  You’re still young enough your life could be changed sooner than later!

      All the best-

      Norma

  • retirednana
    retirednana laura11595

    Posted

    Dear Laura,

    You are so young! I wish I had someone to tell me back then what I’m going to tell you now:  I am 62.  My whole life I have suffered infections and weird illnesses (including BX) Just last year I was finally diagnosed with the problem that has caused EVERYTHING.  A simple but expensive blood test (which my insurance paid for) showed I have Immunodeficiency Disease.  Have your doctor check you for it; and this is IMPORTANT:  they need to break it down to subclasses.  As a “whole” your Immune system may show normal range, but your immune system has different subclasses that “defend” certain parts of your body.  All my subclasses were within normal range EXCEPT subclass 2.  It was extremely abnormally low.  It defends the lungs and ears,nose,throat, sinus, teeth, brain, eyes.

    I am now seeing a Hematologist who is setting up treatments whereby healthy immune donor cells are infused into my body.  I’m hoping to know what it’s like for the first time ever what a normal life without constant illness is like!

    Don’t forget to have your blood checked.  You’re still young enough your life could be changed sooner than later!

    All the best-

    Norma

    • robyn76590
      robyn76590 retirednana

      Posted

       Norma, I am so happy that you shared your story. I am discouraged by one infection after another. The fatigue is incredible! I have been sick for years but only diagnosed 4 years ago with BX. I have Fibromyalgia, chronic Lyme, as well as osteoporosis and other issues. However,  it’s the chronic lung infections, flu like feeling, low grade fevers, after I just get over a bout , that’s getting me down. My traditional blood work is always within range though my white count is always on the low side.  Could you share more about how you came upon this blood test and is it a traditional or holistic doctor that ordered it? I appreciate your input. Robyn 
    • retirednana
      retirednana robyn76590

      Posted

      How could I not seen your post for me til today??! im so sorry!

      To answer your question, a regular MD ordered my blood test. And they ordered the one that checks the IGG levels of each subclass. Thats VERY important!

  • Guest
    Guest laura11595

    Posted

    I'm 65 and have 2 rare illnesses BX  and Acquired von Willebrands; and the only thing that would stop my bleeding is IV Immunoglobulin. Thank You retirednana for that info on a blood test!

    • retirednana
      retirednana Guest

      Posted

      You are most welcome! I hope it helps you in some way. 
  • bronchi0810
    bronchi0810 laura11595

    Posted

    hey laura!

    I have both conditions, and i also have psuedomonas colonisation.

    i was diagnosed with pcd and bronch 13 years ago, so ask away, your not alone!

  • bronchi0810
    bronchi0810 laura11595

    Posted

    hey laura, I too have bronchiectasis and primary ciliary dyskinesia, I am 26 years old and was diagnosed age 13. If you have any questions please message me, and we can support each other!

    I am guessing your taking IV antibiotics for pseudomonas?

    thank you!

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