Story about Bronchiectasis .

Bronchiectasis

Apr 22, 2016

By: Maryanne


Being born with a genetic issue has its trials.  First off my issue goes a little further than Bronchiectasis, I have Kartergener's Syndrome.  To make it easy to explain, I just tell people that I am a mirror image.  This is true, I have been told that this issue happens only in identical twins.  I do not have a twin, at least there was not one born at the time I was born.  Kartergener's was discovered by a doctor in Germany in 1933 which this issue was named after.

In my 72 years I have had issues with my lungs and hearing.  There are other issues also but I find the lungs and hearing are my most challenging issues.  I never knew anyone like myself until a couple years ago when I was introduced to the website called PCD on facebook.  This website has been a wonderful avenue for my issues.  Having others to talk to and actually learn more about what others are going through and helping each other by sharing.

Learning about Bronchiectasis, I find that, yes, it is a genitic issue but for a child to be born with this issue both parents have to have the gene.  Even though I am not the only child that my parents had, but I am the only one that received the results of them both having the gene.  I didn't know that I had Bronchietasis (Kartergener's Syndrome) at the time I got married.  I did know that my heart was on the right not the left but the physicians that know just blew it off as nothing.  When I was a small child, as far back as I can remember I was always sick. visiting the doctors, being tested for something or another and having many surgeries on my sinus area.  But my parents never discussed with me what my issues were and I grew up with activity restrictions due to breating problems.  I wasn't allowed to go swimming like normal children but never was told why.  As I grew up and got married and started a family of my own there wasn't that fear of passing this on to my children because I didn't know that I had Bronchietasis, I was led to believe that it was asthma and allergies.  When certain seasons came around I could make my calendar almost to the day that I would get ill, contract pneumonia.  When I finally found a doctor that recognized what I had, he wanted to check me out with other doctors and that was when I found out that I had Katergener's syndrome but they did put a name to it, I was just told that I was situs inversa and dextracardia, nothing to worry about and set me on my way.  

It took me 30 some years later to learn what I had by a physician who practiced with Kaisier and the day I was told by him what it was and he told me "nothing we can do for you".  I left his office totally divestated and went to my car and sat there and cried like a baby and then I told myself that I wasn't going to let this get me down.  At that time I had been so ill, my lung collasped and I was unable to work so I had no choice but to file for disability and received it.  It took a few years after that doctor rocked my world to find a specialist that understood the issue and was a great help in assisting me to learn how to handle myself and my illness and was the one who knew what to do with the testing and found that I had pseudomonas bacteria colonization in my left lung.  I have been asked by some who have heard my story why I didn't have that part of the lung removed so I wouldn't have to fight the infection.  I wish it was that easy.  The pseudomonas doesn't disappear when that part of the lung is recoved.  Those of us who aflected with pseudomonas it never goes away.  That came from my doctor.  

I am almost 73, I have had to slow myself down, but I have a great doctor staff that is always there for me and who understands my issues and works hard for me to stay healthy.  I can't say it has been easy on me, let alone for my loved ones.  I am grateful for each day I am still on this earth.  I pray that God will give me many more of them, years even.

 

 

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