Alone in America

Chest and lungs
1

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!

 

2

You have defiantly come to the right forum but unfortunately I'm not able to help you as this is all new to me and I feel aweful I'm sure someone will give you some guidance real soon all the best 

3

Hi murphs..I feel your pain...I too am from America (Texas).....my pulmonary doctor more or less said that I just got to deal with my issues...That was about a year ago...I went to ENT for throat infection he is the one that wrote the word Bronchietasis on a piece of paper and told me to Google it in....he also gave me a RX for the Acetylcystene 20% tha t I do in a Nebulizer Machine...about 3-4 times a day....I am going back to the Pulmonary Doctor as soon as possible with this information to see what he has to say...Good Luck...

4

Ok some thoughts that might help. I am not a doctor but have got bronchiectasis and have done my research. The disease varies in severity, some are less troubled but others are greatly affected. Asthma and Bronchiectasis are different and one does not necessarily follow the other. Obviously both of them ( like you and I have ) tends to be a double dose of trouble.

i was lucky enough to consult one of the UKs foremost experts. He also told me the origin could be whooping cough but as older people had all these childhood diseases I am personally not sure how it can be backwards proved. Whatever the origin, we have it! I too have always had sinus problems since a small child, coincidence maybe, but I think not. 

In my case colds are a nightmare. I have mild B, my asthma has always been controlled but colds set it off. It can take many weeks to reduce the sputum and the coughing after a cold. I am at that state right now. I am a little paranoid about hand cleanliness and gel to avoid viruses transferring from hard surfaces. I still get something though at least once a year, often more. Azithromycin certainly helps not because of its antibiotic properties but because it has an anti-inflammatory effect. It is specific it seems to this drug, not the class of drugs. Clarythromycin did not help me for example. Before I learnt the secret of A. life was pretty miserable. Now, except for colds, and two bouts of pneumonia, I have been really great for 4 years. No medication for B routinely ( although others take Az regularly ) and my asthma controlled with seretide. I resort to ventolin ( salbutamol ) only when I have a cold. Normally I have no cough. Before, I was coughing so regularly, had a tough time on rising with constant coughing, almost to the point of choking. My nights are undisturbed. Curiously, when I have had Az or steroids for asthma ( not for some years ) I find the condition only settles after the course of treatment, not during it. I often think treatment has failed but then a few days after treatment has ended, things return to normal. I argue to myself that no matter how good the drugs are they upset the mucous equilibrium. They certainly loosen it and that exacerbates the coughing. It needs the full medication course, and then a tail off, for the mucous to return to normal. This is not a scientific evaluation, just me recognizing what works on me.

Finally  B will make you tired. It does me. So, don't fight against that. Take rest when you can. Find what works for you. Study your own disease and learn from it. I found leaning on my side makes me far worse, so I avoid it. I find sips of cold water helps suppress coughing in important meetings. So, by experimentation, I found what works for me. You may be different but try to listen to your body and learn from what makes you worse.

i often think I am going downhill but after the magic of Az it settles down and I finally go back to a normal life. Do not let it get you down is an important philosophy. It should not stop you teaching but I accept you will be vulnerable to all the new bugs that kids can harbour.

i hope it settles soon and you get relief.

5

Hi murphs,

Good to meet you...it may help if you ask to see the CT scan, so you can see the extent of the 'stuff' in your lungs. I found it better to understand what I had and the extent that it was affecting me.

Sputum tests are also useful when an infection arrives as then you can have the correct antibiotic for the infection. Having said that, some people just have a wide ranging antibiotic and take it because it siuts them. It is all a case of learning to manage your own. It can also help to have some in stock...

Try to do physio every day to bring up the 'stuff' plenty of help on youtube on how to do it.

....and....have a rest every day, you'll need it...

Blessings,

Lesley

6

Hi Murphs

I think that is one of the worst things about bronchi. People who don't have it cannot understand how poorly you can feel at timesaver you don't look any different. You need to try and clear your chest of the mucus daily, it really does make a difference. You need to be taught how to huff to bring it up. My cough has really got me down this time round, I've had this one since October and only just easing now. See if you can get hold of an Acapella which will help you clear your chest. Try not to worry and dwell on it as doing so just makes you feel even more miserable. Be positive, but I think you're right about working in a school. I worked in a college and I think mixing with so many people within a confined space didn't help. I haven't had so many infections since leaving.

7

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. 

8

Thanks Jayne, I am learning so much from this forum and it's really nice to have the support from you, and the others.   Best to you.

9

Thanks cynthia, when I went to the pulmonary doc she showed me my widened bronchi and told me that i had Bronchiectasis. When I got back into my car ,all i could remember was bronch something and started looking up lung dieseases and found it AND this forum, luckily!

Next time I will be writing info down.  Going Friday to GP because I think i have a new infection.  

Hope all goes well with your pulmonary doc.

 Good luck 

10

Thank you Broadsword,  I can relate to a lot of what you wrote.  I too would cough so hard that I would choke, and even strain something in my chest.. And then every time I'd cough , that would hurt too.   Colds last forever.  I'm still coughing, not terrible now though.

The odd thing is that I always sleep well at night.  No matter how bad of a state I'm in.  I don't wake up coughing.   I have started snoring, which is fine because I've listened to my husband snore for years. Haha.

I will take your advise on resting when I'm tired. Usually I would just push through.  I'm glad that you've been well for four years,  that's wonderful!  Thanks for your help and support.

11

Thanks Lesley.  I have my CT scan here at home!  It feels like I'm starting a new infection and heading to my GP this Friday.  I'm waiting until Friday because she's the best in the group.  The other one meant well ,  but waited months before sending me to pulmonary doc.  I'll bring CT scan with me.  

I'll have to go on youtube and see how to do physio.  Do you do it everyday coughing or well?  I'm coughing now so I should try it.

I will make it a point to rest everyday now.

You've been very helpful, thank you. 

12

Hi Dancing Queen,

Love your name!  Thanks for your support.  I know I have to stop teaching nursery school.  They are 4 years old and always on my lap, hugging me, sneezing and coughing in my face.  I'll miss them so much.  I've read that the more infections you get, the worse the Bronch gets.  Is that true?  

So I am going to figure something else out for next year.  New chapter.

I am going to lookup huffing on youtube.  I'm guessing it's different from physio?  Also will see what Acapella is.  Sounds like an herb.

Thanks so much for all of the advice.  I truly hope that you feel better and are free of that cough very soon.

 

13

Hi, I do my physio about an hour after lunch in an afternoon, and have a rest. At the moment there isn't much if anything as I just finished a course of very effective antibiotics. Never felt so clear, someone must have been praying...cool

Blessings,

Lesley

14

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.

15

Hi Murphs,

an Acapella is my little gizmo for helping me to loosen the mucus. It's a hand held device and when you breathe into it it causes a vibration which you can feel inside your chest. It's like cupping physio on your back but the Acapella allows you to do it on your own without needing help. I lie on the bed, on my side, with my chest lower than my legs (I put pillows under my waist, so I'm lying on a slant). After a few breathes into my Acapella I can huff/cough and it brings up the mucus. You can find this on YouTube. It makes my chest a lot easier and I can use it as often as I like, and no drugs. It's only when I actually have an infection that I need to take antibiotics. Although my last infection has taken a few months to clear ur I am now feeling much better again. But like others have said, you do need to rest too. You will learn to understand and listen to your body

16

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...

17

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.

18

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

There is an FAQ section linked at the bottom of every page which has more information about links, moderation etc. Due to the rules we have to have in place to stop spammers posting some valid posts do get sent for moderation but will be approved.

Regards,

Alan

19

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.  

   

20

Hi Dancing Queen,

Silly question, but is an Acapella a flutter valve? 

That sounds easier than finding someone to pound on my back several times a day.  Do you go for massages? Are they helpful?  We have inexpensive ones at the local mall, they charge by every 5 minutes.  I'd love an excuse to go for one twice a week!

Glad that you are feeling better!