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Alone in America

Posted , 9 users are following.

murphs
murphs

I've been reading these discussions for 2 months now and am so happy that i found this website.  I felt really alone after being diagnosed with something that no one had ever heard of , near me.  I was diagnosed with bronch after finally have ct scan done.  I had been sick for 3 months.  My GP had said to me a few times that she was just trying to keep me out of the hospital. I had been on tons of steroids and antibiotics before  CTdiagnosis.

Went to a pulmonologist in Feb and she told me that i had bronch and asthma.  She has me on nasal, oral, and eye allergy medicines and a steroid inhaler.  She told me to come back in 6 months and don't panic when I go online to read about this disease that i have.  I did panic.

She didn't tell me how severe it was.  I still cough alot.  Sometimes I get super tired. AND now I feel like I have a new cold, which is a little scary. 

I am a nursery school teacher and i love my little students but realize I shouldn't go back to it next year,  because they are always coming in literally oozing germs.  Which I'm pretty sad about. sad

Anyway, I have always struggled with my sinuses and CF was never brought up.  No sputum tests.   I did have a routine blood test , maybe that checked for CF?

I have had numerous cases of bronchitis, lung infections, and she thinks whooping cough.  So that part makes sense.

From reading your discussions it seems like I should have been told more.  What to do now that I'm getting sick again.  I don't think even the specialists know alot about bronch here in the states.  

I also have those lung nodes butnot even thinking about them.

Also If you have Bronch do you automatically have asthma? 

FYI, I'm 53 am pretty fit.  Like many of you, people always say I look good even when I don't feel well.

                  Thanks for reading this!

 

4 likes, 51 replies

51 Replies

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  • BookNut
    BookNut murphs

    Posted

    Hi Murphs!  I am from New York - the beautiful countryside, NOT the city.  I have a mild case of B.  It os frustrating to hear that it is mild, since for me it is like having the flu, complicated by wheezing and EXTREME shortness of breath EVERY 6 WEEKS at a minimum.  I have a PCP, an Asthma/Allergy Doc, a Pulmonologist and an ENT.  No one has given me anything to get me out of a flare up other than nebulized asthma meds and prednisone.  HOWEVER....they have all been treating me for asthma because the pulmy termed the B as mild.  I have taken matters into my own hands after my recent hospital stay.  I was prescribed saline solution in my nebulizer.  My nebulized meds have never done me a whole lot of good - which is why my asthma doc refers to my illness as "asthma-like".  I just realized that she did not have B in her records as a diagnosis.  I think she will have more ideas for me now that she knows that.  Anyway - I have actually been ENCOURAGED by my research, because I have found many things I can do to be proactive.  So, now I have a 3 times a day routine that seems to be helping.  Maybe it will help you.

    1.  Saline solution in my nebulizer 3 times a day. (within days I was able to drop my asthma inhaled meds completely)

    2.  Drink LOTS OF WATER to keep mucus thin.

    3.  I am taking n-aceytlcersteine OTC pills called Sinatrol.  MUCH better than mucinex, which thickens the mucus for me..

    4.  Breathing exercises.  Yoga has quite a number of them.  I basically breathe in slowly, hold it for 3 seconds and then breathe out as slowly as possible.  I do this 5-10 times and follow that with 2-3 "huff" breaths.  This forces mucus up out of my lungs.

    5.  I use a flutter valve which is good at moving the muck

    6.  I go for a 20 minute walk once a day. Hoping to build back to 4 miles a day, which is where I was before all this started

    I am not sure that my doctors will entirely agree with this diagnosis.  My PCP today says that my x-ray shows no evidence of bronchiectasis.  But I know the CT scans I have had over the past three years all defintely show it.  But she supports my plan as it is good for any respiratory issues, and it is making me feel SO EMPOWERED to be doing something to prevent flares rather than simply waiting for another one to surface and using prednisone. 

    • murphs
      murphs BookNut

      Posted

      Hi Booknut,

           That was worth waitng for!

       I will look for Sinatrol.  I am taking Singulair and Patanase(sinus nasal spray).  I don't have a nebulizer, I like the idea of just using saline solution to loosen up gunk.  Will ask doc Friday how I get one.

       I have been drinking tons of water every day and taking dog for walks.  I have to try huffing.  Will check it out on youtube.

      Have to ask doc where i get a flutter valve from too.   Do you use it after the nebulizer, or it doesn't matter?  I really like the idea of being pro-active.   

      Pulmonary doc said I should see allergist too.

      Like you, I question whether I have asthma.  I think it was the Bronch all along.

       I'm afraid that I have another lung infection. This time I'll bring a list of questions and your suggestions to doc.   Would much rather use saline solution than prednisone.  Do you also recommend Azithromycin for infections?

      Thanks again for all of your suggestions.  I'm so glad that I found this group.  

         

    • cynthia61971
      cynthia61971 murphs

      Posted

      Hi Murphs..BookNut has been a lot of help...I use the nebulizer machine with liquid Acetyclysteine 20% about 4 times a day..it really breaks up th mucus..Here in the US you can buy the machine at drug stores..tubing & mouth piece also..I also use Oxygen Meter on my finger...it has been low today 91-92...today sucks..
    • BookNut
      BookNut murphs

      Posted

      Glad to be of help.  I will keep you posted how my new routine is going.  I have only been off pred for a very short time.  How I am feeling about mid May should tell the story.

      I have been using the saline nebulizer first - before the flutter valve.  If you think to ask your doctor about that, let me know what he/she says.  Bascially, I do saline, breathing exercises, and then flutter valve.

      Just got back from my morning walk.  Gorgeous day to be out. I have decided the most efficient thing to so is to get up, do my saline-exercise-flutter valve-sinatrol routine.  Then get dressed in my walking gear, go out for a walk, and them come back and get dressed for the rest of the day and eat my breakfast.  Darn good thing I am retired. Though - before I retired - my daily walk fit in very nicely from the work parking lot and back again before driving home.

      I am taking Clarithromycin 3 times per week to keep infection at bay. I don't think it has had any effect.  Not sure why I am not on Arithromycin, since that seems more common.  Maybe I can't get it in a dye-free version.  i am mmildly allergic to yellow dye and extremely allergic to red dye.

      The other thing that I have added over the past 6 months is monthy Solair shots to keep my allergy response tamped down.  It is a bit of a scary drug.  It did give me 8 weeks feeling good.  The longest single stretch I have had in 4 years.  But then the cycle seemed to get going again.  Not sure I will continue beyond the next 6 months.

      I too am glad to have found this group.  SO helpful to get other ideas. Often others with the same condition are more help than our doctors!!

    • BookNut
      BookNut cynthia61971

      Posted

      Thanks Cynthia!  I am interested in the nebuslized Acetyclysteine.  My doctor yesterday seemed to think it would do better for me than in pill form. I have heard that the neb version smells bad. Does it?  I will see my allergist soon and will run it past her.  The pills have done wonders so far for my post-nasal drip, which I think is the root cause of my cycle of infections followed by breathing exacerbations.  How long have you been taking it?  Does it help when you are having episodes of wheezing/sob?  Very interested to hear more.  Thanks!
    • cynthia61971
      cynthia61971 BookNut

      Posted

      Hi BookNut....The Acetyclysteine comes in small bottles like vials...it does smell bad..like rotten eggs...but boy does it work fast..couple of puffs into my lungs and I get phlem up...i have to do it every few hours...might be because it is spring and allergies are and pollen are bad here in Texas...I think post-nasal drip is a big problem of mine also...I have been on it since last November...I went to ENT for a yeast infection in my throat..He wrote me a RX for it and said this might help you.....it did...Yes it does help with the wheezing..and it is cheap...I hope I was able to answer your questions....
    • murphs
      murphs cynthia61971

      Posted

      Hi Cynthia,  That's really good to know.  I will check walgreens or CVS.  I'm seeing doctor this Friday bc I have new lung infection and will ask her about the saline and the Acetyclysteine.  

      Do you use the nebulizer with ACetyclysteine everyday?  Even when you don't have an infection?  

      I hope that you're oxygen is higher today and that you have a much better day.      Wendy

    • cynthia61971
      cynthia61971 murphs

      Posted

      Hi murps..I use the nebulizer 3 to 4 times a day...it does not help with infection only to break up musus..sometimes I wake up at 4 or 5 in the morning and have to nebulize..sucks but the mucus gets stuck and I have to get it up....oxygen about 93 today...
  • BookNut
    BookNut murphs

    Posted

    Hi!  I posted earlier and my comment is being held for moderation for some reason.  This is the second comment being held.  I don't think I am violating any rules....except on one post I included a link.  Evidently a no-no

    I am just posting now to find out if all my posts will be held.  I hope not.

    • cynthia61971
      cynthia61971 BookNut

      Posted

      Hi BookNut....They said you would have to PM me about the link...kind of silly...They are holding a message I just posted to you a short time ago...
    • BookNut
      BookNut cynthia61971

      Posted

      I have no idea how to send a pm...but it was just a link to Amazon.  I don't know if you are from the US.  If you are from the UK....I am not sure if Amazon is available in the UK.  I am sure you can find n-acetylcysteine for sale online somewhere.
  • BookNut
    BookNut murphs

    Posted

    Just another thought.  I wonder if you can take something to boost your immune system?  I hate to think of you quitting a job you love if you can get this under condtrol.  I retired 4 years ago from my job as a school librarian, and immediately got sick.  So - you might quit for no reason.  I loved my job, and would have worked longer - but for a variety of reasons it was probably a good idea.  I am 67 now.  I had high school students.  I can tell you, they are just nursery school students in big bodies.  We used to do all kinds of "baby" activities with them and they loved it.  The time we colored Easter Eggs, when we were done they said "if we go away and come back in an hour, will you HIDE the eggs?  So much fun!!  I miss my kiddies every day.  But at least now I can be on Facebook with them which is fun!
    • cynthia61971
      cynthia61971 BookNut

      Posted

      BookNut...now I know where the name comes from..I retired from a Gift Shop I worked at here along the Texas Coast...I live between Galveston & Houston..I am 64 yrs. old....it was just time for me to...my 8 hours was begining to feel like 12 hours...I am on FB if you ever want to connect...(Cindy Schmidt)...
    • BookNut
      BookNut cynthia61971

      Posted

      I would love to connect via FB...but there are quite a few Cindy Schmidts.  Maybe you could search my name and send a friend request.  I think there is only me with my name...Jacquie Hedworth Henry.
    • murphs
      murphs BookNut

      Posted

      Hi Booknut,  kids are great , always, all ages!  Love the Easter egg story!

       

      I know it seems rash , I've taught different grades for the past 21 years, but I am always catching the germs they bring in ,  and I've read that the more infectons you get , the worse the disease becomes.  I found that very upsetting.  I'll see what happens next year.

      I'm also an oil painter which is probably not the best for Bronch.  I keep a window open.

      Is mowing the lawn a problem?  Someone said it was.

      I'm am going to copy your morning regime once I get the neb and flutter valve.  Love long walks.  

      I will let you know what doc says!   

    • BookNut
      BookNut murphs

      Posted

      Lawn mowing can be a big problem if you are as allergic to fresh cut grass as I am. Creates a stream of post nasal drip runny nose and red, itchy, streaming eyes. Bad news. Good luck with upcoming appointment.
    • murphs
      murphs BookNut

      Posted

      I'm allergic  to trees and grass.  You're right,  I would always need to run inside to blow my nose a few times while mowing!  It makes sense.  Seems like we all have allergies.
    • BookNut
      BookNut murphs

      Posted

      Yea...I think the allergies contribute over the years to the eventual lung damage caused by this symdrome.  Mucus is the enemy.  We have to mobilize all our weapons against it!!!
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