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Update Report on my pulmonologist and CT results
@cwal @pacathy @lilianna @rstel7272 and anyone else who sent me good vibes - thank you!
I got a great report from my visit, but this is a bit long.
First, my new pulmonologist is awesome - I have been trying to get in to see her for almost 5 years, and finally! She is well-engaged with other pulmonologists who are expert in Bronchiectasis and NTM, including at Mayo. She is very up-to-date on the latest protocols and emerging treatments.
Second, she has assembled a team within our clinic who all work closely to keep us healthy - Respiratory Therapy, Speech Therapy, ENT, Infectious Disease and an awesome nurse.
Third, she LISTENS closely and respects my experience as a patient.
What were my results?
My CT shows stable bronchiectasis, no signs of inflammation, no mention of nodules or cavities. Yay!
We have agreed on twice weekly saline, once daily Breyna (Symbicort.) This, of course, will be increased in case of a respiratory bug or exacerbation. For daily airway clearance - her preferred method is via 30-60 minutes of exercise so I have resumed my brisk walking routine and am nearly up to one hour a day.
With the stable CT, we will forego the sputum culture for now.
We have set up a treatment protocol for exacerbations, which we already used when I had Covid - increased nebs, 5 days of steroids, and antibiotic in reserve. I have instructions to start steroids with any exacerbation and send her a message - then if not improved in the 5 days, start the antibiotic and notify her.
She diagnosed my "choking" episodes as Vocal Chord Dysfunction and I have already started speech therapy and corrective exercises. I will also see the ENT to make sure there is no trachea/vocal chord damage from years of coughing.
She was knowledgeable about Mayo Connect & NTM-ir and happy I was part of it.
For the first year, we will consult every 3 months, or more often if I have a problem.
This was followed by a visit to my cardiologist who feels the treatment for my newly-diagnosed blockage is going well, and all other tests show my heart and arteries to have no changes from earlier exams. The medications have controlled the long-time angina and shortness of breath that I thought it was "just asthma". So no invasive procedures and follow up in 6 months.
To say I feel blessed by finally making these connections is a gross understatement!
Replies to "Update Report on my pulmonologist and CT results @cwal @pacathy @lilianna @rstel7272 and anyone else who..."
So happy for you Sue! Sounds like you have a good doctor and you two connect well. What a blessing!
Sue I am sooo happy for you. That’s a wonderful news, nothing more to wish for. Stay healthy and we really appreciate your voice of reason.
That is wonderful news. So happy for you. Where is your new Dr. located. I recently found out that my Pulmo Dr. got a radiology report showing they suspected MAC back in 2016, but he never told me about it and never sent me for any CT scans etc. It didn't come to light until April of 2023 when I took myself to the ER for something else only to find out that a node showed up on my lung. From there my family Dr. sent me to this Pulmo Dr. who then sent me for CT scan and now told me I have MAC disease. He wanted me to start the Big 3 all at one time. I refused and found a new Dr. We are doing a watch and wait since I don't have a cough and do cough up a little mucus in the morning. My last CT showed no change. I'm 76 and he said it's possible I might die from something else before I ever have to go on the Big 3. I'm so happy I found this site and all of the wonderful people ( including you Sue) who share what they are going through and what they have learned on their journey. Barbara
Sue, that is truly wonderful news! It sounds like a terrific team. It’s especially great that your angina is responding to treatment. I’m hoping you vocal cord therapy goes well.
I do have a couple questions. I was very surprised to read that you have no nodules on CT. Does this mean you have no trees-in-bud as well as isolated nodules? Ground glass?? I had thought all/most of us had them. Also, do you use albuterol nebs prior to walking or using saline?
I was also unfamiliar with NTM-it. I also ran across the slide about neb cups not needing to be sterilized-great news! I had missed that.
Thanks so much!
Great news, Sue. So glad you are liking your new doctors and doing well!
I am so happy for you, Sue. What encouraging news. To have a right doctor and the right path to take to manage the condition are what we are all hoping for.
Thank you so much for sharing your treatment plan and your routine practice.
Ling
I had not been on the site for a week or more, busy getting ready for my trek to Tyler and a few days stay in the area.
So glad to hear about all your good news Sue. So encouraging....now for my "gut' decision about starting the anti-biotics.
Barbara
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Wonderful news. It's a good feeling to connect with a Dr with true bedside manner.
Rick