Cannula oblivion

I recently had my annual eye exam and decided to get new spectacles, usually the ophthalmologist says the change is so minor that it is up to me, but my current ones had about outlived their usefulness because I heeded that advice a couple of times and I was tired of them as well as them being sprung beyond holding original head fit due to reading when  in bed so they kept sliding down my nose bridge and so I decided to choose something entirely different. A blue frame, which is my favorite color but also the color of my mother's eyes that I wished I had inherited. It took the full ten days of waiting for them to be made and each day I wondered if I was going to regret my choice.......I have had them for a while and and pleased to say, I enjoy the change more each day. I think they fit with my gray hair and my green eyes. And when I asked the optician if he would snap a couple of photos for me, I totally forgot that I had on my cannula from the Helios portable. And I didn't even notice it until I had downloaded from m y camera into the Picasa file!!! How is that for adaptation eh?

graysmoke
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PRODUCT

 This is the beginning of the peak during the latest hemoptysis episode and when I almost gave in to the impulse to dial 911. In the emesis tray the item on the left is a facial tissue, as you can see, totally inadequate when bringing up this amount of blood. This was about one fifteen a.m. on August first and I am still trying to get back to what constitutes normal for me. Astonished at how much more I was affected this time, been three years since similar episode, this time recovery much much slower, age and disease progression probably the reasons.

graysmoke

UNWELCOME

At one fifteen this a.m. I had a big shift in the production of blood, ugh. --have stayed in recliner, tried to abort by eating chipped ice but still the larger initial expectorations probably about 1/4 to 1/3 a cup, doesn't sound like much but looks like a lot. Took photo--am still bringing up fresh but in smaller increments, debating about calling 911 and going to hospital for possible scanning and IV antibiotics and fluids----not sure feeling as sick as I do that I should handle alone, hate though to trigger the overtreatment I feel is sometimes more a precautionary CYA type of concern than what would be more reasonable for geriatric individual.

Trying to remain calm although it is still a scary event even if I have had about a decade of dealing with this, off and on.

Going to eat half a banana to stave off the hunger......so I do have an appetite, very little leg strength and slight headache only other symptoms except for the generic "I really feel sick" complaint that defies further descriptions.

graysmoke

It has been a long time but not long enough...

I cannot actually believe a year has passed since having an episode of hemoptysis warranting posting about........last evening broke that span though. So far it has been what I will term a light moderate episode.  Maybe I have forgotten but I seem to feel worse than I recall, overall. I am still not on any treatment for the mycos. The only change there has been in a recent result of sputum specimen analysis and due to discovery of species outrunning lab abilities to identify but the gap seems to have closed and instead of having MAC/MAI label, my bugs are now refined to being m. chimaera.......don't think my body cares what these nasties are called......they are not welcome creatures in the lungs.

I am observing my usual practices, started a course of levaquin (seven days-500mg), keeping quiet and still, not eating heavy diet, attempting to not aggravate coughing etc. --- so far seem to be holding the line.......hoping this doesn't drag out.  Also fervently hope this won't require inpatient care. I don't plan to report to the doctor right now. Later.

graysmoke

New Study

Even though this pertains to tubercular hemoptysis, since there is little research into non-tubercular cases, I thought it worth reading so am giving the link here for those interested:

http://icvts.ctsnetjournals.org/cgi/content/full/13/3/276

I had a recent episode. It started August 24th and is now resolved. I cared for it on my own with the methods I prescribed in earlier posts.

graysmoke

Going ON Holiday

-- that title is just an expression -- I am getting a Big Three holiday courtesy of my new ID doctor whom I saw on Tuesday, March 29th, 2011 -- this will be followed up on May 13th and I am, of course hoping the holiday can be permanent. The chances are that we will try some other pharmacological treatment to be selected after there is further analysis of my sputum specimens. He is sending them to National Jewish--the initial studies were done at Meridian and for some unknown reason they were unable to comply with the ID doc's wishes for additional testing.(The current ID specialist has privileges at Meridian and many other local hospitals but is on the staff at OHSU medical center in Portland and is involved in number of research studies on NTM and bronchiectasis.) I have been on the ethambutol/rifampin/clarithromycin thrice weekly routine treatment since 2005, if my memory is correct.The usual time of use is 18 to 24 months established jointly by the two main professional societies involved in respiratory/pulmonary diseases.Stopping the regimen is based on having negative sputum counts for a year otherwise one might continue the meds indefinitely but few do so and fewer though have hemoptysis issues. I have had consults in the past with other ID specialists about continued use and both were reluctant to have me stop the meds. At my request my Mayo pulmo agreed to an attempt to eliminate them in November of 2008, but progression was evident in lab workups so he recommended I resume the regimen which I did. The progression hasn't been halted as evidenced by CT and the sputum count raising up to 4.6 from 3. So it seems time to try something else, clofazamine is the only drug mentioned -- not sure how I feel about using this orphan drug which was pulled from the general market in the past and permission to use must be granted by FDA which requires the usual bureaucratic maze of red tape paper work. The scuttlebutt is that not many medical offices want to deal that. My main reason for the long use of the Big Three was the possibility that it reduced the number of hemoptysis episodes so I will be careful to track that- which is one reason I am using this blog to enter info, it will serve as a journal of sorts. As to my emancipation -- I feel unmanacled!

Halloween's Trick no Treat

Another episode of hemoptysis insisted on making a Halloween call. There were bleeds at one a.m. the morning after. The following day presented me with a couple more periods of active leaking at 7:30a.m. and 11:00p.m. to an undesirable level so I took my usual precautions. Lowering my activity level and being more selective about diet. Now even the streaking is gone and sputum darkened with stale blood also much diminished, ah so.

I was cognizant during the three and a half months of new property remodeling that this could sideline me at any time, I am grateful it didn't happen until now. And my son was here from Tahoe so I wasn't alone. The bleed stayed in the moderate range so another positive if one can count positives when having lung bleedings.

I was already on a ten day course of doxycycline because of elevated infection level indicated by various symptoms. Perhaps that helped keep it from further escalation.

I am looking forward to other conditions improving. There seems to be something out of whack with my GI tract, feeling like the esophagus is irritated and it interferes with swallowing. My laymen's diagnosis is that it suffers from excessive pill popping. :)

My supplements, along with the Tue/Thu/Sat regimen of pills and capsules for NTM bring the daily total up to 16 (!) on those days. And I am only taking what the primary and other doctors of mine have recommended, now if they could concoct an individual supplement cocktail to avoid wearing out the antique esophagus that would help a bunch. LOL --

I do use BOOST to lower the amount of solids needing swallowing and perhaps it helps, not sure.

But the bottom line is that I am better on all scores but need to be cautious because I haven't been well enough yet to get the seasonal flu shot.

graysmoke