Monday, October 02, 2017

Story of a Cough

I have a cough that I had come to  think of  as just one more annoying symptom in whatever chronic disease I have. I am reviewing my cough today because it should be seen in a different light since the discovery of multiple nodules that were found in my lungs last month.  15 months ago there was only 1 lung nodule and at first, it seemed like that it was going to stay that way but now I know I look like a light-covered Christmas tree inside because I saw the scan at Dr Louisa's rooms last Wednesday 13th September.  It looked something like this:

I want to start at the beginning of this "extra" cough.  I always have coughed to clear mucous and I have had a post-nasal drip as long as I can remember so there always is mucous for me to cough.  But it is just a cough that does what it is supposed to.  Obviously this cough has not been a problem for most of my smoking life either.  Not like when I've caught a cold or something that seems to make smoking totally irritating.  That's the kind of cough that drives you crazy because it does not stop when you are not smoking and it always seems to be worse at night lying down in bed.  But those coughs don't last very long and smoking goes back to being something that does not irritate any of my tubes.

A few years ago, I managed to swap smoking cigarettes for vaping a liquid that contains nicotine.  It was not as straight-forward as I would have liked because I found certain combinations of devices (the e-cigarette) and liquids (flavoured, unflavoured, PG versus VG)  problematic because they made me cough but I eventually settled into a routine of settings on the device and I decided on unflavoured nicotine juice in the strongest nicotine content you could get.  It so obviously worked for me because I did not miss smoking very much at all.

I decreased the use of the nicotine replacement over time and I was vaping unflavoured 0mg nicotine juice (60:40 PG:VG) at the time this story of a cough begins.

I was not vaping very often throughout the day when I began to notice that vaping was making me cough.  I cut down on vaping even further because of this but it was not something I chose.  It was because of the annoying cough that I could only stand a puff or two.  I have no idea where the cough came from and I do not recall associating it with any cold or virus or family or friend's cold or cough (or anything).  The problem was that at the time, I was feeling depressed about my life with chronic illness and the horrible antibiotic treatment protocol I was on with its ability to flare up pain after each Bicillin injection and many other side-effects or herxheimer reactions whatever they were.  I persevered with the antibiotic treatment because it was the only way to rid myself of Borrelia, Bartonella and perhaps Babesia which I had been diagnosed with.  The point is that I was depressed.  And I was choking and coughing my insides up every time I tried to vape and it wasn't going away like it would if it was from a cold or something I had caught that was causing this extra coughing.

I used to have a friend who came to visit me up to a couple of times a week if I could not get over to see her.  She was a smoker and we had been smoking buddies while we talked.  I tried one of her cigarettes and I did not cough and splutter like I did when trying to vape.  It was so weird but I began to think I had developed a sensitivity to the vaping liquid but not cigarette smoke.  Because I had not been adding nicotine in my vapes, I got quite a head spin from smoking my friend's cigarettes and for some stupid reason it made me laugh.  I had been so depressed and here I was laughing at my own head spin sensation.  I guess it was not so subconscious but I gradually built up the number of cigarettes I had and I borrowed then bought even more for Ron so to be fair on my friend within a month I had bought my own tobacco and I still do buy it and smoke it. I smoke like a chimney but I miss the vaping.  The tickly sensation from vaping that caused me to cough and splutter, I did not miss.

Last year I some tests run as requested by a specialist and they incidentally showed a small nodule in the upper right lobe of my lungs.  I was told it could be anything and that it required monitoring.  I think the second scan was three months later and because it did not show any changes I did not have the next scan for a year.  I wondered if it had anything to do with this newer onset cough but most times a stethoscope was used, nothing was heard coming from my lungs.  As per usual, one cough and any mucous was gone and my lungs sounded as clear as a bell until this year. It was getting harder to clear this mucous with just one cough and it even seemed to come and go every couple of weeks.  I was making lots of noises and rattles and wheezes and at night time my lungs would "snore" not my nose.  A couple of coughs and it was cleared and I could go straight back to sleep. My GP diagnosed asthma after hearing something in there but did not prescribe me anything until a couple of months later when I asked if I could go on a preventative because I have enough problems with a racing heart to be able to enjoy any relief from Ventolin.  At this point the doctor changed my diagnosis to COPD (because of my smoking) and gave me a Symbicort sample inhaler which seemed to help eventually but the most newsworthy improvement was the return of my singing voice.  My voice had been getting lower and croaky over the past several years and it often cracked when I tried to sing but a couple of months into the steroid spray I could call out and sing with more range before something would crack or croak.  "Bonus", I thought. I love to sing but not if I can't control my own voice so I felt like I was getting back some control and even imagined myself joining a choir or group.

The novelty of curing my voicebox with steroids waned when I was told that my most recent scan shows "changes" which maybe suggestive of anything but it could be an infection.  When I got my hands on the report I read a little more detail but for over a month that's all I had to go on.  I was given a course of antibiotics for a week. Two antibiotics (Clarithromycin and Amoxillin) with a view to shrinking an infection in my lungs and then I had three weeks to wait for a repeat scan and somehow get hold of the results. I was told it could be cancer or an autoimmune disease instead of an infection and I worried a bit in that wait time.  The cough actually got worse while I was on the antibiotics, heaps more mucous and I started getting pains in the chest, from the coughing I thought.  Even my heart hurt when I coughed but surely not.  I did not feel like I was on the antibiotics long enough to even show some promise of healing but at the same time I hated what they did to me as I switched from constipation to close to diarrhea so I was glad to stop, but the gut pains only got worse and I seemed to have one long bowel attack for weeks in September.  It was worse than the stupid cough.

Sometimes, not often, I get tickles inside that are so intense that all I can do is cough and it is very violent coughing and that can happen while I am asleep enough to wake me up.  I don't smoke in my sleep so I can't blame that as an irritant when it happens.  The post-antibiotic CT scan took place the beginning of September and  because I thought "no news must mean good news" and because an appointment was delayed due to my  bowel attack plus whatever else is going on that had me so sore and lifeless, I waited longer than necessary to get my results.  I think my glands are up in strange places as well as the usual places and I was feeling feverish.  I have complained of a low-grade fever all year on and off because that's what the chills and flushes at the same time feel like and when I had a working thermometer it showed a half  to one degree increase but not more than.  It was insignificant but I feel ill and that should count.  Anyway, I got my results of the second CT scan after seeing the rheumatologist where we still discussed the first, pre antibiotic scan.  She was concerned that I should be seeing a lung specialist and that it impacted on her assessment of my problems which she suggested may be some kind of vasculitis.  She showed me the lung scan with lots of "lights" on it and I thought "Crikey, if that was lung cancer, surely I'd feel worse than I do and surely I will die fast if that's what has taken over my lungs".  I didn't have all this chest pain like I do now...just a bit and the silly mid-back cyst pain and referring tingles.  It seemed to me that I got worse after the antibiotics ran out.  Although the cough, being productive, still feels insignificant and there is no sign of stained sputum.  But also on that report was a statement that I had a small pericardial effusion mainly on the right side.  Oh man, that's fluid around the heart!

Later when discussing it all with Dr Jo, she was still sticking by her "it could be anything" and I was supposed to wait now until I get to see a Dr Craig Wright, respiratory (and sleep) specialist who deals with both cancer and infections which they all probably do.  Anyway I asked Dr Jo what this pericardial effusion was there for and she said infection.  The radiologist's first pick was atypical infection and I sure feel like I have a fluey infection along with a viral sore throat that has flared up again...but I always have a sore throat.  As for the heart thing, I wasn't advised to do anything re investigating it specifically but if I was rich I would go get an Echo.  I told Jo that she did not seem particularly concerned as I walked out the door.

Obviously the doctor didn't think it was concerning so why should I be concerned?  I've thought that one thought over and over trying to placate any of my fears as they arose. You might say I have spent the whole year thinking that even though I feel like the whole year has been a battle, and that it does not seem likely that I will get back to the level of health that I felt before the decline last year, which was well before Christmas last year, it can't be that important or there would be some action. The cough waxes and wanes, the gland pain waxes and wanes, the gastroparesis improves or is manageable, the bowel was relatively well-behaved until it started going into knots recently and repeatedly but that was after the anti-biotics mentioned above.  The body-wide aching sort of squeezing pain got worse and pain relief was the concern of every day nearly. My legs and the brain fog came and went in relation to the times I took prednisolone until I started taking it full-time in June.  That autoimmune outcome seems quite independent of this cough and chest pain and it feels like I have a chronic infection but my opinions don't seem to count mainly because they are not even asked for.  I hoped the rheumatologist could sort out the lot but I have to wait until this lung nodule stuff receives a verdict and I fear that will mean invasive tests.  Beats me why they don't start treating for mycoplasma pneumonia since I have had it before and I surely have read so much about it remaining dormant and able to be reactivated as well as causing disseminated disease.  It seems like the easiest answer that fits the clinical facts.  In the meantime, I'm getting worse, despite deliberately sleeping as much as possible this week around the clock in an effort to make it easier for my immune system to try and beat this thing.

You should Google "Mycoplasma Infectious Diseases" and find


Kazuhiro Matsuda on Facebook
It seems to be another one of those areas where the average doctor has their head in the sand.  In the Lyme world though, Chlamydia pneumoniae seems to be more of a problem than Mycoplasma Pneumoniae.  And in our family, the only infectious clue is Mum with her evidence of TB in her lungs.  Anyway, I have another week of antibiotics because I am not getting better, in fact I am getting worse with the flu-like illness and I have indeed had heart pain which I think I will be able to recognise now as a small pericardial infusion and indeed it is unlike the other chest pains I am having but I only say that because it was on the CT scan report.  Before this I thought it may have been angina but I do get "stings" every now and then which is different again.  Anyway, something is causing pericarditis and I assume it is the same something that has invaded my lungs and making it go away with long-term antibiotics sounds like the easiest option out of this predicament.  But none of the doctors I know would prescribe them even as a trial.  I will ask for another week.