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.