I was there in November for 5 days just before thanksgiving. They were great. I have had Mac since 2021 and bronchectisis. My treatment plan is amakacin infusion for two months and 4 oral antibiotics go back sometime in April. Hope to start next week. Question has anyone had a picc line. Hope all things go well for you

I am curious as to how one would finance a visit like this to the National Jewish Hospital? I am a member of Kaiser, an HMO in San Rafael, CA, and it is hard to go out of their system. If I left them altogether, I would have Medicare with a supplemental. Would the latter be enough to cover something like this? I have always worked for myself as a lawyer so never had an employer health plan.

Kaiser is decent, and I have access to a respiratory therapist there. My pulmonologist who is an intensive care doc as well and was the head of the team that saved my life when I had the massive hemoptysis, so I have a lot of affection for this man, and he always goes through CT scans with me carefully. But I don’t get the sense that he is a specialist in bronchiectasis and never was proactive about getting a sputum sample from me. It has been very difficult for me to produce one, but it was only at my last hospital visit that he said that the next time I have a bleed, such a sample would work. My disease has progressed significantly since 2012, but he said he sees only a slow progression now and that he isn’t worried about MAC b/c there is very low mortality rate associated with it. That hasn’t reassured me quite frankly, but I also feel a lot of trepidation about getting on antibiotics for eighteen months as many people with MAC have to do—and for maybe longer. I already had TB daily treatment with Ethambutol and INH for two years when I was twenty and there is no doubt that this wreaks havoc with one’s microbiome, which in turn can cause other problems. In short, I am both looking for a more sophisticated diagnosis (how to finance it is the rub) and on another note, have a pipe dream that there is a bronchiectasis expert out there who is not so drug centric. There are functional, holistic M.D.s cropping up in all practice areas of medicine, and am wondering if there is anything like that for lung disease. My daughter had a terrible eighteen-month illness that seemed like long Covid and chronic fatigue syndrome and neither her PCP, a rheumatologist nor infectious disease specialist were able to really help her. She went to a holistic clinic and a nurse practitioner there discovered through the fine-tuned testing they ordered that she was on the verge of copper poisoning from long use of birth control. She stopped, and within two months was 90% better. They used chelation supplements to get the copper out of her system.

Now, I do understand that infection requires antibiotics—they saved my life at age 20. But I am curious whether overall health and even pulmonary tissue can be built up to a level where one can better fight these infections given the nature of our illnesses. Just thinking out loud here.
Curious to hear others’ thoughts.

Best to all,

Aida