Hi @katemn. I'm glad to hear that you had a good trip. Sorry to hear, though, that you cough caused a disturbance, what a nuisance! Everything is progressing in my life. As you may remember I had a heart cath in August. Everything looked good, except for the aortic valve which is leaking "like crazy" (not the technical term, but my interpretation). It has resulted in a DX of heart failure (not congestive, thankfully). I've met with one group of doctors who have told me my only option is open heart surgery (cutting through the sternum, etc.) it of course has a long recovery and of course a lot of pain. While there are cath procedures for replacing aortic valves (usually for aortic stenosis), my valve problem is not a candidate for that procedure (I don't have stenosis). I'm getting a second opinion at U of Michigan in mid-October and I'll make a decision after that. It will be good to have this behind me and while I would like to just "get it over with" I know that picking the right surgeon and the right hospital system are also important. Well, that is my story. Good to have you back! Teresa

Hi Katherine! So happy you had a nice holiday and glad you are back raring to go! I'm still on the watch. My infectious disease dr from Cleveland was ready to start me on meds cause my ctscan had some changes but after she consulted with my pulmonary dr from Mayo Mn It was decided to check again in Dec. I have a ct scheduled for Dec.and also hope to make a trip to my Mayo Dr. for advise. I'm feeling great, still no symptoms and exercising on days I don't work. I do have a question, I no longer use the shower, is this recommended?
Staying happy and well,
Lisa....@tutti

Hi Kate, Glad you had a good holiday. I've been fine. I have a question for you and everyone else. The first Dr. I saw told me my MAC wasn't contagious. I told him I was particularly concerned about being around a friend and an uncle that had cancer. He said no problem, not contagious. Well, I switched Dr's about a month ago and she had a write-up that she had done - kind of a Bronch/MAC 101. In it, she said that MAC wasn't contagious unless the person was undergoing chemo. Well, both my friend and my uncle were. And I visited my Uncle last spring on a trip to MN and actually went to his chemo treatment with him based on the Dr assuring me that I was NOT contagious. He was so emphatic about it. What have the rest of you been told about this? Are we contagious in some situations? Which Dr. was right?? I feel really terrible about this. Janet

Excellent question. Also, is their a legal issue about notifying employers when you are in a service care industry - teaching, nursing etc.
Happy to see you back Katherine!

So glad you had a nice vacation!<br><br>I have two appointments scheduled now...one with an infectious disease specialist (in one week) and one with a respiratory specialist (still 6 weeks away but I am also on the cancellation list). I really want to get in before I head to my step-daughter's wedding out of the country in early October, so that I know if there are any precautions I need to take while travelling. The worst part for me is not knowing whether I have a mycobacterial infection or not, and also not knowing how bad my bronchiectasis is because sometimes I can't tell if my shortness of breath is allergy related, stress related, bronchiectasis related or all of the above! [??]<br><br>I have also had another symptom that is concerning me and I wonder if anyone else has had it...about 3 or 4 times I have suddenly felt like i stop breathing...not sure if i actually do, if my heart skips a bit, or what is going on. Has anyone had this feeling?<br><br>Thanks for checking in on us.<br><br>Fran<br><br><br>

I am at the same phase as you are. Good luck to both of us! I did have some concern last weekend when I couldn't catch my breath after trying to mow a push mower. It's not the first time. I wasn't sure I could get in the house and I live alone. Another factor was that I had caught a "bug" from my students and am now on strong antibiotics which make a huge difference. Hope this is something you can resolve. Best, Kathryn

Do you use oxygen? I went to Europe last year and needed portable O2 on the plane. I also had a pulse oximeter. I was 2 months on the medicine. I was only using O2 at night at home at that time. Not required anymore at all. I was fine until I had to get up and get settled again.
Elaine

Welcome back and glad that you had a good holiday. I feel like I actually have some pretty good news. My ID ordered a CT scan of my chest before my last appointment with him which was about 2 weeks ago. He said that the scan showed that I have no nodules or cavities and that my lungs look good. He and my pulmonologist reviewed my chart and CT scan, and agreed not to start any treatment for MAC at this time, based on the scan and also because I really don't have any symptoms. They did, however, agree that my pulmo doc will treat my bronchiectasis and the pulmo doc feels that by treating it, that may be all the treatment I will need. I have an appt with the pulmo doc on this Thursday, so am keeping my fingers crossed that he will get me started on the treatment and that I get some relief from the chronic cough and shortness of breath, which really are my only symptoms.

In the meantime, last Friday I had a heart catheterization as I have to have an aortic valve replacement in the next few weeks. I was diagnosed with aortic stenosis sometime ago, and have the cardio doc has been watching it with echocardiograms yearly. Because of this, it is sometimes difficult to tell if the shortness of breath is caused from the bronch or the stenosis.

I feel very encouraged and also fortunate that I am not going through the many symptoms and difficult treatment that many of you are having to endure, but please know that my thoughts and prayers are with each and every one of you. Also, I will continue to pray that a better, more modern treatment and hopefully cure will be discovered very soon. Linda (mimi68)

@justjanet - you ask if NTM or MAC is contagious. I've always been told it was NOT contagious and I acted accordingly.
Per the NTM Info & Research Center: "Nontuberculous mycobacteria are not considered to be communicable person to person."
https://www.ntminfo.org/faq/other-questions/am-i-contagious
Paula

Sound like you had a great time, except for the coughing. I have had a Barium Swallow. I am scheduled for a Endoscopy soon. Still have that awful cough, I am surprise my husband haven't left me. It really bother me at night. Glad you had a safe trip.