New member looking for advice on doctors and navigating illness

I have bronchiectasis and live in the Philadelphia area. I don’t feel my present doctor is helping me know how to deal with this. It has progressed. I’ve recently had two different lung infections one on top of the other. I think i need to get a second opinion. Can you recommend a doctor at Penn?
Thank you

Yes it is great to have all the tests they can do in such a short time so that a patient will know if there are other problems that are important to test for to know if one has, possibly has, Bronchiectasis or a MAC infection.
Interesting that you mentioned four days of wearing the line and device to measure any, if any, problem related to acid reflux. They just required a 24 hour period for me when I was there. I believe that it would be better to have the line and device in for more than 24 hours.
Hope you get good results.
Enjoy Denver....The Cherry Creek Area where the Marriot Residence Inn is, is lovely and convenient.
Barbara

Yes it is great to have all the tests they can do in such a short time so that a patient will know if there are other problems that are important to test for to know if one has, possibly has, Bronchiectasis or a MAC infection.
Interesting that you mentioned four days of wearing the line and device to measure any, if any, problem related to acid reflux. They just required a 24 hour period for me when I was there. I believe that it would be better to have the line and device in for more than 24 hours.
Hope you get good results.
Enjoy Denver....The Cherry Creek Area where the Marriot Residence Inn is, is lovely and convenient.
Barbara

I go to Dr. Dorgan and am VERY happy with him! He is at Penn. He LISTENS and talks to you like an adult. When I went to him I already knew quite a bit about Airway Clearance so I can't speak to that part but he came recommended to me from a support group. He goes above and beyond. I had an Xray (from my GP) that had a disturbing and strange finding about my bones in a particular area. He had a colleague check it out and thankfully it turned out to be nothing. How many docs would do that?! Good luck! Deb

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

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

Aida-
When I reached 65 I was fortunate to know about the difference between Medicare with the Advantage Plan vs Medicare with the Supplement Plan. I am retired and on Medicare with the Supplement Plan. In fact with the Supplement Plan I myself more often than not made/make my own direct contacts with specialists. I have not needed to have a referral other than two times. I have gone to several specialists since the beginning of my journey to find out what was wrong....Bronchiectasis..... and eventually at NJH where I learned I had MAI. Between Medicare and the Supplement all I had to pay was the small deductible, other than the monthly premiums for Medicare (Original) and the Supplement Plan. Naturally other costs while there, such as hotel we all must pay ourselves. Many hotels give discounts when in town for medical reasons.

I am hoping and since I feel well and have not had an uncontrollable coughing spell and other factors that come into play for BE/MAI exacerbation...and with trying to keep my immune system strong I can put off and not start the antibiotics. Another reason also why I have decided not to start the antibiotics yet is that my Pulmonary Function Test is off the scale for my age in the right direction and I am able to bring up mucus easily.

Antibiotics, liquid form, did save my life in the 1980 when I had two serious types of pneumonias at the same time. However, I developed Candida, chronic fatigue and multiple other little changes after that episode. I cleared it all due to a doctor who believed in alternative methods along with conventional methods. He was the only one who recognized my having a yeast problem, systemically, as an after effect of the liquid antibiotics.

Aida...have you searched for a Bronchiectasis specialist. I know there may be a site that can bring up BE Specialists around the country...I found it at one time but don't know it now.
Maybe someone on the site might know how to find the information for finding a BE specialist.

Glad to hear your daughter (and you) found her way to a holistic clinic and how wonderful that a nurse practitioner did what she did. I am familiar with chelation therapy via IV or supplements. Chelation therapy can clean out heavy metals from the body. I know it has also helped diabetic and heart patients also.
Barbara

Aida-
When I reached 65 I was fortunate to know about the difference between Medicare with the Advantage Plan vs Medicare with the Supplement Plan. I am retired and on Medicare with the Supplement Plan. In fact with the Supplement Plan I myself more often than not made/make my own direct contacts with specialists. I have not needed to have a referral other than two times. I have gone to several specialists since the beginning of my journey to find out what was wrong....Bronchiectasis..... and eventually at NJH where I learned I had MAI. Between Medicare and the Supplement all I had to pay was the small deductible, other than the monthly premiums for Medicare (Original) and the Supplement Plan. Naturally other costs while there, such as hotel we all must pay ourselves. Many hotels give discounts when in town for medical reasons.

I am hoping and since I feel well and have not had an uncontrollable coughing spell and other factors that come into play for BE/MAI exacerbation...and with trying to keep my immune system strong I can put off and not start the antibiotics. Another reason also why I have decided not to start the antibiotics yet is that my Pulmonary Function Test is off the scale for my age in the right direction and I am able to bring up mucus easily.

Antibiotics, liquid form, did save my life in the 1980 when I had two serious types of pneumonias at the same time. However, I developed Candida, chronic fatigue and multiple other little changes after that episode. I cleared it all due to a doctor who believed in alternative methods along with conventional methods. He was the only one who recognized my having a yeast problem, systemically, as an after effect of the liquid antibiotics.

Aida...have you searched for a Bronchiectasis specialist. I know there may be a site that can bring up BE Specialists around the country...I found it at one time but don't know it now.
Maybe someone on the site might know how to find the information for finding a BE specialist.

Glad to hear your daughter (and you) found her way to a holistic clinic and how wonderful that a nurse practitioner did what she did. I am familiar with chelation therapy via IV or supplements. Chelation therapy can clean out heavy metals from the body. I know it has also helped diabetic and heart patients also.
Barbara

Thank you so much for your response, Barbara. That is heartening news. Again I see how many things we have in common. For my last birthday, my daughter, her dad and several friends put their resources together to gift me a couple of sessions and additional testing at the functional medicine/holistic clinic that helped my daughter, and which is extremely expensive and out-of-pocket. I was able to get about half of the testing covered by Kaiser and the rest had to be out of pocket, luckily with a 70% discount—but still around $400.00. At the first visit, the P.A. that saw me at the clinic asked to see my tongue when I told her I had been on antibiotics for two years and observed that it was completely coated in white—a clear sign of candida. That has been the case for decades. She immediately said that though they seldom prescribe pharmaceuticals, she wanted to prescribe systemic Nystatin and some lozenges for thrush to try to get at a better baseline to restore the health of my microbiome, which we are learning is so important to overall health. In two weeks I go for my second appointment, and I just completed the course of Nystatin.
Barbara, would you be willing to share what your supplemental insurance is? It sounds great. Finally, I sent you a direct message several days ago and was wondering if you had seen it.
I always appreciate your insights.

Aida