My bronchiectasis specialist is leaving!
After recently reporting that my dr was the second speaker at the recent National Jewish symposium and telling you how much I like her, she called this morning and told me that she is leaving the U of Chicago and going to Tyler, Texas. I am distraught!!!! How can she do this to me? Texas is REALLY far from Chicago!
I believe that some of you are being treated at National Jewish or Mayo but live far away. I will have a local pulmonologist but I hope Dr McShane will continue to treat my bronchiectasis and any little bugs that show up in my diseased lungs. How does that work?
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I apologize Judy. You meant that Griffin is at U Texas. I did some research and understand better why she chose Tyler. It is a University town and as such, she will be able to do the research she loves along with other doctors who specialize in NTM. I know she wants to find a definitive cause for bronchiectasis as well as antibiotics that work for just about everyone. There are few doctors with those specialties here but she can work along side of Griffin and other top notch doctors in that area at Tyler. Also I would imagine that, because it is a center for NTM disease, UT gets more grants and drug company money for research in the area of medicine she loves. Because of Skype, etc I think long distance treatment is possible but the matter of billing remains. I'm resigned that I will need to go to Tyler to see her at least once a year in order for insurance to cover her treatment. 🙁
@auntnanny, Hi Jan! Just a heads up, tobramycin will sometimes kill both pseudo and mac. Are you still doing your inhaled saline treatments?
windwalker yes, I couldn't do the 4-week on/off so they put me on 2 weeks on/off. More than that gives me serious breathing problems. But I plan to stay with it a while longer. I started in March and can see no improvement in either MAC or pseudomonas. Perhaps I need more time. Yes, I do albuterol followed by saline (and then toby when I'm on it). So wish I could see improvement. I also just finished 14 days of cipro 1000 mg daily…… don't see any results from that either. Kind of discouraged, Terri. Jan
Hello all…I’ve just gone through the “quarantine” and dx with mac. Waiting on a repeat scan at three months, as my previous scan is quite busy, and we need to see if it’s stable and “just” Mac, uncomplicated by “something else” The pulmonary group I saw for this is in Jackson, MS. But they do not treat Mac, and have referred me to an infectious disease group that I imagine sees very little. I have read about Tyler, and, though I’m sorry I’m reading that an excellent doctor is leaving Chicago to go there, I’m happy to know there are specialists less than 8 hrs from me. As I’m waiting for the next scan, I’m doing some integrative things, and will be able to tell if they are helping. If so, I’ll post about it. It appears this will not be a simple path, but I’m happy to know there are others from whom I can learn and with whom I can share. Btw, I’m in Pontotoc, MS, and am a veterinarian, and am extremely frustrated by doc’s so far…but hope that will change:-) Good luck to all…
@auntnanny Hello Jan. I apologize for not getting back to you sooner. I have been dog/house sitting for three families consecutively for the last three weeks, and been out of my routine. I am sorry that you are feeling discouraged. This is a fickle infection to battle. Most of the treatment plans end up being a three year thing before people test negative. So, hang in there, and if need be; try diff meds up the road. I know you have been at this battle a long while already & it gets old. You have to go on, and also do self mental checks. Give yourself wellness pep talks. Tell that mac you will NOT have it anymore! Sending you cyber hugs.
@sam33 Hi there. I am glad that you have joined our discussions. Are you able to navigate around our group site alright? Have you seen our 'Discussion Board' with a list of topics? There is a lot of helpful info there. Please let me know if you need help with any of that. Also, if you don't mind, keep me posted on how your next scan goes. Sometimes mac goes away on it's own or will just lay way low. I am hoping you get a good report. What brought your dx to light? Were you having symptoms?
Hi Aunt Nanny…when I tried Tobi for my psedo, it wasn’t as effective as the Colistin…I take 150mg every other month….knocks it back to very lite….after 4 weeks or so back to medium…go on Colistin again for 4 weeks, and so goes my cycle…have been doing this for a few months…feel great💕
Hi Terry. Thank you. I would like to think this could go away in its own, but It seems to involve all lung lobes but upper left, and there is cavitation in middle right. I think the follow up scan is just to make sure it’s “just” mac. A year and a half ago, I had a medical exam for work (USDA veterinary services) about 18 mo ago. It showed patchy opacities in right middle lobe. I was unable to get anyone to take it seriously (GP) since they never saw the one done by the gov, and their recheck rads only showed scar tissue. So…shortness of breath progressed, some pain on the right, fatigue, crackles when in reclining position, couldn’t breath good when lying in right side, and finally a cough when reclining that was so bad I asked for a referral. Then the pulmonologist told me I was referred to told me that was all in my mind, and that it was just asthma. But we were going to do a scan anyway. She was surprised I think. Did the scope and never saw me again. Health department snagged me for 10 day quarantine, then saw pulmonary NP for follow up. They have referred me to Infectious disease because they don’t treat this. I’m going to go, but only to hear what he has to say, and likely either get referred to a pulmonary who treats this or refer myself to Tyler, Tulane, or Mayo. I could drive to Tyler or Tulane. Do you know if anyone has had experience with Tulane? I feel like I’m in “doctor jail”. Oddly, I’ve worked with back yard chickens regularly over the last four years. Coincidence? Lots to get off my chest:-) Thanks for asking:-)!
Although I am extremely lucky to not have had to battle MAC or pseudos yet, the approach you have described sounds more unique than I’ve heard from many others…..it sounds like it’s been very effective for you! Congratulations and continue to feel well!
@sam33 Hi. Is your name Sam? I have a similar diagnosis as you. My middle right lobe is now beyond cavitary, it is now a big dead spot. I too saw many drs over the years who just didn't have a clue as to why I was so sick in my lungs. So, I understand your frustration. I was told I had asthma and pneumonia all of the time. I finally got to the Mayo in 2013 and they literally saved my life. I was a big old mess. I was on the verge of needing a double lung transplant. Fortunately, the treatment plan I was put on knocked the mac down to an undetectable level and stopped the progression of lung damage. I am doing amazingly well these days although very short of breath. I looked up both Tyler and Tulane. Tulane's pulmonary dept did not list anyone there that specializes in bronchiectasis or mac, nor critical care. It seemed like it offered only basic lung care. I could be wrong on that. Tyler looked very good. In fact one of our members is losing her great doctor to them. Her dr is leaving the Chicago area to work at Tyler. If you are willing to travel, Mayo Clinic in Jacksonville is wonderful. Now, you mentioned working around chickens the last four yrs…we have a group member with chronic mac who has had chickens for yrs. in her back yard. There can be a correlation to getting serious lung diseases from chickens. You can Google the question and find some sites to tell you more about that. Are you coughing a lot right now?