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

ADDENDUM -Hemoptysis curse

A detail I inadvertently didn't mention in the feature is important when having an episode of hemoptysis of the type I experience.

DO NOT LIE PRONE!

Keep the body elevated until the active phase is over. This is to avoid possible aspiration.

http://www.medterms.com/script/main/art.asp?articlekey=2369

And it means propping up so that during the night you do not slip into a prone position.

And a comment about the photos. The collection shows product of one of several daily bleedings that usually repeat four to six times the first three or four days-- I hope that clarifies this aspect of it.

graysmoke

THE BIG THREE

What passes for standard treatment for MAI are commonly referred to as the big three. They are ethambutol, rifampin (or related forms) and clarithromycin (or other quinolone).

The customary and usual is taking the three drugs on a three day per week schedule. At fairly high dosages. The duration benchmark is eighteen to twenty-four months, or until sputum culturing is negative. In my case these have not afforded significant change in sputum culturing but the ID docs I have used on consult and when hospitalized, point out that the possible synergistic effect of possibly halting increased severity cannot be determined. While on the regimen, there are requirements for monitoring by having regularly scheduled liver tests, hearing tests and vision tests.

I did not jump at the recommendation to do this back in 2003 when a bronchoscopy revealed the specific mycos; and instead tried inhibiting progression with a alternating antibiotic schedule with the cooperation of my Mayo-Scottsdale pulmonary specialist. This approach was taking a course of levaquin for one week during a month and the next month doing the same with doxycycline. I did that for approximately two years. But when scanning indicated progression I decided to go on the big three.

I did the regimen from mid-2006 until November of 2008 when I asked if I could try a drug holiday. I was only off them until mid-February 2009 when testing indicated to my specialist that I should consider resuming the drugs and I did. I continue taking them.

I do not have many side effects, only the metallic mouth taste from the clarithromycin. Unpleasant but tolerable. So far liver function does not show impairment not do other monitored functions.

It might be worth noting here that regular contagious tuberculosis usually can be eradicated in this day and age with just six months of medications. Not so with the non-tuberculosis mycos.

Some patients are candidates for lung resection or even removal of an entire lung. My lungs are affected in all lobes so I am not a candidate for surgery.

There are pulmonologists that do not advise using the big three as treatment. Some cite the inability of a patient to be compliant with the regimen, (it is my understanding that development of the three days per week regimen has improved compliance). Unhappily the one I am trying here after my relocation falls in the group that is not high on using the big three.. I have only seen him twice and he ordered a lung x-ray, which I reluctantly had even though I have been accustomed to using a CT every six months to track the diseases in the lungs. He also had me do a full PFT.

I will keep my next appointment with him and decide then whether to seek a different specialist.

There are many speculations as to why some people acquire NTM's. Theories range from immune system problems to long standing lung scarring from other infections. Then there is the proverbial chicken and egg dilemma. Most patients also have bronchiectasis. There are various types of "bronch", and I have several, these are diagnosed by patterns in the imaging studies.
So ergo: is it bronchiectasis disposes one to acquiring myco(s) or myco(s) cause the bronchiectasis? In my view both may be true. Personally I had widespread scarring from many bouts of pneumonia during infancy and early childhood those decades past when there were no treatments, I was saved by a dedicated doctor and an aunt who was an RN.


NIH has a number of studies in progress for which I am not a candidate either. But hopefully they might learn more about the diseases and the treatments. Meanwhile one makes an optimal effort to deal with the reality. And exercise and maintaining physical conditioning rank above medications in importance in my layperson's viewpoint.

graysmoke

MEET-UP

Having cyberfriends is great and even greater is when there is an opportunity to meet some of them in person. This happened on March 08, 2010 in Portland Oregon. There is a support group here because of the efforts of Grace and the other current members are Pam, Pauline, Geri, Marge, Michele Sheila, Sheryl and myself. Others have had previous opportunities to meet but this was my first time since moving here. The members live in various locations over the state and near environs.

Back in November of 2007 I met others with these diseases for the first time when I attended a national patients conference at National Jewish Hospital in Denver. Because of our shared symptoms and the uniqueness of the pulmonary features, instant bonding happens. We've all been in the trenches so to speak and so these meet-ups are so memorable.

So it was this time. Unfortunately and predictably, not everyone could attend so another day I hope to be able to see the absentees. We had a two hour session of sharing our experiences with the medical history of each and swapped information about how much variation there is in the medical services field about how to handle this complex of diseases.

Pulmonary mycobacterial disease has long been ignored and only when a variation, disseminated (or non-pulmonary) NTM began to be seen frequently in the HIV-AIDS population did the medical attention get more focused. In January 2007 for the first time in fifteen years the IDS/ATS jointly published a paper updating the knowledge about pulmonary mycobacterial diseases. Let us hope that there will be more attention and greater knowledge acquired so that better treatment options will become available.

THE CURSE OF HEMOPTYSIS

When hemoptysis hits, it is a great challenge to remain calm - I have had to handle many episodes of this - the photos are from an episode last June. It was especially trying because it didn't resolve over the usual three to four day period.
I use emesis basins to expectorate when possible in order to estimate the amount of blood loss over a twenty-four hour period because that is how I decide whether to get myself to emergency.

I avoid hospitalization when ever possible. In the past, I learned how to handle it from going through emergency a couple of times. Hospitalization leaves me even more debilitated from a bout because of their measures which include isolation in ICU for seventy-two hours -usually followed by another seventy-two in cardio-pulmonary telemetry unit and restrictions on physical activity and diet.
In self-treating I do observe restricting my physical activity but not to the extreme imposed in a hospital setting, and I follow other patterns I learned - like only liquids for the first day and bland easily digested meals afterwards until some normalcy is restored. Other patients do not have this degree of loss and many only have blood streaking in their sputum. Bully for them!

I was hospitalized on the fifth day of the above episode. My Mayo pulmo insisted - and as usual this bleed was a signal that my level of chronic infection had increased and that I had pneumonia, but I was out of the hospital in five days. An underlying condition, bronchiectasis of which there are several types and a subtype, traction bronchiectasis, which I have; predisposes a patient to having blood from those areas because of the deformation of the small airway vessels that then either leak or break. Only rarely are these life threatening events and in some cases embolization of a vessel (BAE) is a procedure that is offered, moreso it seems in Britain than here.