PRICKLES I read your recent post about your condition

Discussion in 'Fibromyalgia Main Forum' started by futurehope, Apr 13, 2006.

  1. futurehope

    futurehope New Member

    Sorry that I missed your post yesterday!!! Yes, I am very interested in your posts!!! The posts move SO VERY FAST sometimes I miss them!!

    If you remember in one of your earlier posts. I responded to you that I had never head of bronchiolitis. But I told you that I do know about bronchiectasis. I do not have it, but at one time they thought they seen in my chest x-ray, so I had a CT scan and it verified that I did not have it.

    Although I do have alot of lung problems, including scar tissue, and fibrosis (it is isolated to one area). Also the two bottom lobes of my right lung are gone due to bronchical cancer.

    I also have ASTHMA, I have a rescue inhaler and a preventive inhaler which I take one puff in the evening. This is a easily controllable condition in almost all cases. Did they do the test on you to verify that you have asthma? Can't remember what is called. But I remember it is ran by a machine and you breathe in something. This will tell them how bad your asthma is and also VERIFY if you actually do have asthma. I also have a peak flow meter. I cannot meet my peak flow (green area) though.

    I am not sure what allergic bronchopulmonary aspergillosis is?

    Stupid doctors, they are too afraid to tell you what it all means. I have learned that over the years. AFRAID is the correct word. They play down.

    You can do three things, one is to make a immediate appointment with this doctor and demand answers to this condition. Two, is to read up. And three is to find another Dr.!!!!

    And trust me, you do not worry to much.

    Yea, don't worry, you don't have cancer, I have heard that so many times. But there are so many other things out there that can cause death besides cancer. And many conditions that can possibly lead to cancer.

    I am unsure of your age, but I am 39.

    I really do not want to tell you about the condition of bronchiectasis, (guess I am like the Dr.) but I suggest that you read up a little and then get back to me.

    I KNOW someone personally that has this condition and can help there when you read up. I guarantee it will help you.

    Don't worry about rambling, I do it too. I think we are just trying to get in every little piece that we can so people can get a clear picture.

    Love and prayers,
  2. futurehope

    futurehope New Member

    Hi, bumping for you.
  3. futurehope

    futurehope New Member

    I am sorry I did not get back to you sooner. It has been a VERY BAD night. Had a big fight with husband.


    Sorry, had to get that off my chest. Those are words that I am thinking right now that cannot be posted.

    I have to say Prickles, that you are a very brave young lady. I can recall being like you though when I was younger.

    I just did not want to upset you and cause undue stress. You are really a nice person!!

    I am glad that you had researched Bronchiectasis. Make sure that you write all of your questions down for the Doctor.

    From what I remember when the Docs thought I had this and I did my research, Bronchiectasis is mainly a condition that is in your bronchial tubes. They fill up with gunk that you need to get out of there.

    Do you cough a lot?? Especially in the morning?? It is vital that you get rid of the gunk to keep yourself as healthy as you can. Usually, one has a friend or partner that needs to beat (not really beat) on your back everyday so you can clear that stuff out.

    Yes, people have lost lobes of their lungs over it. Yes, it can become very bad.

    I hope there is some way they can tell how bad yours is. I am not sure how they go about it.

    Now, about the person that I know that has this condition. He is 38 years old now. When he was 5 years old, he had a bad case of phenomia (sp)., which was what caused his Bronchiectasis. He still has all 5 lobes of his lungs. I do know that he has a VERY BAD case of coughing in the morning when he awakes though and has to clear himself. His wife told me that his mother spent tons of time working on him in his younger years clearing his lungs by beating on the back. But today, he is able to exercise and he is healthy. But he still has the condition. It is not curable, I am pretty sure it is progressive.

    I have Asthma too, and I have 2 inhalers, I have a rescue inhaler and a maintenance inhaler which I use every night. Mine is also a steroid inhaler.

    I have never had a lung function test, I don't think, unless that is the Asthma test. But maybe it is because you have three conditions that are affecting your lungs and they want to see how much air you can take in and blow out.

    I think I told you that my lungs are not in the greatest of shape. I lost two lobes of my right lung with bronchial cancer, I have had histoplasmosis, I have scar tissue, Asthma and localized fibrosis (from what, I do not know).

    I wish the best for you Prickles and keep me updated.

    By the way, I looked at your bio and I LOVE your outfit. Oh, I wish I could be that young again!!

    Love and prayers,

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