Pulmonologist - what to expect

[flutterby]

I started having this cough sometime last fall - I'm thinking October, but I'm not sure. It's been a while. I first saw my doctor about it in January and it had been going on for some time by then. It started as a sporadic thing - I would wake up coughing until I gagged, and couldn't catch my breath. I would shut myself in the bathroom with the shower on hot to fill the room with steam, like you do with a baby with croup. It happened every couple of weeks, then every week, then a few times a week...etc. Anyway, in January my doctor prescribed a rescue inhaler and sent me to an allergy and asthma specialist (I was also having the itching all over my body - no allergies were found and and after a couple of months the itching stopped as suddenly as it came on - doctor decided it was stress, which made sense). The specialist did a lung function test which was normal.

I've done two rounds of antibiotics and two rounds of steroids - although the second round of steroids was for other health issues. When on the steroids, I don't do the cough. Within a couple of days of stopping, it comes back with a vengeance. It's worse when I lie down, and with any kind of exertion (i.e., walking) in cold weather. Humidity seems to be an issue, too. It's to the point where I have to use the inhaler about 30 minutes before I go to bed, or as soon as I lie down I start to rattle and feel like I can't get a breath. I typically wake up after 5-6 hours, coughing, can't catch my breath, and have to use the inhaler again. The morning time is problematic, as I can't breathe in enough for the inhaler to be really effective. So, I do 2 puffs, wait for stuff to loosen up so my cough can be productive - and then I can take a deeper breath, then do 2 more puffs. Usually I'm good after that, although I do seem to get short of breath easier than I used to.

My doctor has prescribed....I'm not sure if it's a nebulizer or what. A company is supposed to bring it out to me and show me how to use it. She said it's a breathing treatment with humidity, and should work better than an inhaler since I can't breathe deeply enough in the morning for an inhaler to be really effective. She's also sending me to a pulmonologist. She thinks since I've done 2 rounds of antibiotics that it's probably not an infection like bronchitis, and I had a chest CT (unrelated - to check the thymus gland when they thought I had myasthenia gravis) in October that was "unremarkable". It did show some minor scarring in the lungs from a previous infection, but that was it.

So....after all that....what should I expect at a pulmonologist appointment? I asked her if she thought it could be Chronic Obstructive Pulmonary Disease (COPD), and she said no since my lung function test was normal. She mentioned the possibility of sarcoidosis, which is why I think she's sending me to a pulmonologist.

 

[nvts]

Hey Honey! Haven't talked to you in a while...just like you, it's been nuts around here.

Now don't think I'm nuts or anything, but I've had 2 friends who've gone through this cough thing that you're doing. One had something called sarcoidosis which pretty much ended with the diagnosis. Steroids, monitoring and she's been fine ever since.

The other one however, went through all the testing, all the appointments and it turned out that she had a hiatal hernia starting and the cough was due to the irritation at the esophagus. Her doctor told her to start chewing mint gum (any type - spearmint, wintergreen - it didn't matter) and she hasn't coughed since the second week that she started this routine. That was the end of last summer.

It's worth a shot!

Beth

 

[Autismkids]

Are you using a spacer with the inhaler? It's being recommended that all people, not just children, use spacers because it's nearly impossible to use an inhaler the right way.

I've tried both ways, and I can say for sure that the spacer makes a world of difference and the medications actually get to your lungs as opposed to sitting in your mouth or throat.

 

[DaisyFace]

Heather--

I was thinking the same as Beth - maybe it's not a lung problem at all ? Could be something simple...

Hope it turns out to be nothing serious!

Good luck!

 

[Hound dog]

husband and mother in law also had hiatal hernia causing similar symptoms. It can cause spasms of coughing in certain people. Actually......come to think about it, it does the same to my mom. They found hers due to the coughing that didn't check out as anything else.

Hope it's something easily treated.

 

[flutterby]

It's not a dry cough. Well, it is, until I use the inhaler and it seems to loosen up the gunk. Once I start coughing the gunk, I can breathe. Until then, I can't take a deep breath.

I'm just wondering what kinds of tests pulmonologists do.

 

[flutterby]

I should clarify that. Until I start coughing up the gunk, I can't take a normal breath.

 

[seriously]

Pulmonologist is likely to re-test your lung function as well as listening to your lungs, having you do a peak flow (do you know what that is?), measuring your height (helps determine your expected max peak flow). They will probably have you do the peak flow before and after using the inhaler you have now. Is it albuterol? That is the rescue medicine for asthma/bronchial spasms.

They may add a different/more inhalers or other treatments. I would expect them to order new lung xrays. Once they have those they may do additional testing like CT or MRI.

There are lots of possible diagnoses including ones that are mostly annoying and easily treated. More serious or problematic diagnoses that I can think of would include sarcoidosis, fungal lung infections and mild cystic fibrosis. CF was the one that rang a bell for me when I read your description but I am certainly no expert and I think it is highly unlikely it is CF.

If you want more info on CF though, here's a link to info about late diagnosed mild CF

http://www.cfeducation.ca/en/latediagnosis.aspx

 

[susiestar]

A CF diagnosis might mean that difficult child has to beat the gunk out of you - someone would need to do these treatments where you arepounded on the back wtih a certain amt of force to loosen the gunk manually. I know MY difficult child would have found it fun where my husband would not have been able to do it. He won't hit ANYONE for ANY reason - makes him feel like a monster. But Wiz would have had a good laugh, lol. And been the best at it that he could be just to help me even when furious at me. He was always odd that way.

Anyway, that is more a joke.

I would expect that your doctor would have put you on an inhaled steroid LONG before now. I would urge you to try symbicort before advair. Advair is a powder that MUST be inhaled VERY forcefully. with-o forceful inhalation the powder doesn't get into the lungs and it does no good. Advair is also VERY hard on the vocal cords if you do not gargle after EVERY treatment. thank you and Wiz both had real problems with this. Research shows that under the age of about 10 it is rare for a child to use the medication properly and get any benefit from the medication, but they still push it at kids. Symbicort is an inhaler like any other and gets the medications to the lungs easily.

The nebulizer sounds like an excellent idea. IF you don't have a spacer, ins might not pay for it, but check ebay and amazon and get one. It will make a world of difference. My mother thought I was NUTS but went ahead and tried it when she was having asthma act up and was shocked at how much better it worked for her. So she now will use it when she needs an inhaler - when she remembers it. The difference in peak flow with Wiz when he used the inhaler with and without the spacer was dramatic.

If you don't have a peak flow meter, expect the pulmonologist to give or recommend one and ask you to chart results before and after medication each day. It helps them get you on the right medications. They may also have you do exercises where you use a gizmo that has you trying to raise a ping pong ball with your breath. It helps to move gunk out of your lungs.

Also, if you are not taking mucinex daily, invest in it. IF you use the brand name it is 2 pills a day. IF you use the cheaper instant release versions, take them according tot he directions - every 4-6 hrs. Either will help get the gunk out more easily. You can even use liquid robitussin as it is the same stuff - just take it as directed. It will help the gunk be less sticky and easier to get out.

 

[flutterby]

I expected her to put me on Advair when she put me on antibiotics, as she has in the past. She did oral steroids, which was ok with me because I was flaring so hard anyway. And they helped a lot. She doesn't want to put me on them now, as she's afraid it will mask the problem for the pulmonologist. The inhaler I have is albuterol, and the nebulizer came today. She mentioned sarcoidosis because of all of my other health issues - she's always thinking "systemic" with me.

I don't know what a peak flow is, but google is my friend. I had a chest CT in October (for an unrelated reason), and I have the disc, so I'm taking that. I don't know if he'll want to redo it, though. I hope not. I've had so much radiation that I should be glowing.

 

[flutterby]

And, Susie, difficult child would enjoy beating the snot out of me. I can see her face now.

 

[susiestar]

That was why I mentioned it, lol!
A peak flow meter is a gizmo you breathe into and it lets you know what your hardest breath measures - to let you know how your lungs are working. They can be very helpful

Again, I URGE you to try symbicort or at least ask about it. The stats I have read about how many people, even full grown adults, who do NOT have the ability to inhale it hard enough are frightening. If you choose advair, be sure to always gargle. ANY liquid is fine, but you have to rinse your vocal cords off and that does it.