MAC Dr. recommendations Mayo Rochester: What to ask at first appt?

jammer..….. I'm a Mayo patient too...… I don't know your pulmonologist, but I'm going to say I'm sure you are going to be pleased. They work together there and you will have the advantage of a consensus opinion versus just one person. And.... I've never encountered a Mayo patient who wasn't totally pleased. Get ready to smile......

Thank you for your response, glad to hear the good news about Mayo. I do not know anyone who has gone there and is nice to get opinions for others. May I ask, the first time you go do you get treatment or just a consult.

jammer …… It is a clinic setting. Never had to remove any clothing. They did scan of lungs from front and back side (people doing that were extra nice too. I was in Rochester but think they all treat people wonderfully. Saw pulmonologist after the scan and he told me what I had and that it was chronic but they could manage it. I was quite ill when I went and I asked him specifically if I were going to die from the disease. He smiled and said "You will die with it, but hopefully not from it". It is chronic and not curable. That was four years ago this Fall. I'm 78 years old so I think they are doing a good job with me. He prescribed what meds and told me how to take them. There is a pharmacy right there and they can fill everything for you. You will leave feeling much better than when you arrived. If I can answer any more questions, please just let me know. Oh yes, I coughed up some yukky phlegm for them to test. They had results of it within a couple of hours also. I hope this helps.

Thank you for the info. I am 70 years old and was diagnosed in March and have been on meds since. I am being treated by a local doctor and am not happy with them. My doctors here are sending all my test results to Mayo in Jacksonville, FL. I was wondering about the doctor they gave me at Mayo and what happens on the first day. SO nice to talk to someone who has been through all this.

@jammer Yay!! I am so happy that you are going to Mayo! My doctor, Dr. Leventhal is retiring next month (sad face) and he has been grooming his replacement, Dr. Johnson. She has won medical awards and is really into her specialty of mac & bronchiectasis. What Ihave loved about my dr is that he uses unconventional treatment with great results. I have been mac-free since 2014 without going on the Big 3. That conversion happened after having been desparately ill for about 10 yrs. I was on the verge of needing a double lung transplant. I feel normal and whole now. I owe my life to Mayo. I hope that your experience there will be as wonderful as mine. Please keep me posted. Good luck!

wow what a great result for you. I have been on the "big 3" since March and my energy has gotten and gone. I am so tired all the time and now am having pancreas problems. Hoping Mayo will be able to help. Wow no "big 3" for you, what ever they used did great for you. Hoping I can get the same results.

@jammer You may have a consult with your pulmonologist so that he/she can examine you and learn more about what you are experiencing. Tests will then be scheduled, probably for a different day. So, if you are traveling there, you will want to know that and line up accomodations. At the end of your testing day(s), you will meet with your pulmonologist Your dr will have all the results and will go over them with you and then talk about a treatment plan. You will leave with the appropriate medications called in to your pharmacy. I love their system.

@jammer I go for my first appt at Mayo on August 20th. I have been on the Big 3 now for about 20 months. My current Pulmonologist and ID don't know what the best course of action is right now. So, I told them I needed more answers that I just am not sure what to do next.

@jammer How did your Mayo appt go? Who did you see? How do you feel about your experience there? Are you still in Jacksonville?

That’s wonderful news! I hope the appointment works out well for you🤞