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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21, 2024 | Replies (9354)Comment receiving replies
@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your husband. I feel like your husband shouldn't worry too much about Dr. Scrodin's age/experience, because the Mayo only takes on the best to work there. Sometimes 'older, more experienced' isn't always the best thing. Sometimes the older ones get complacent and do not keep up with current trends in medicine. Your doctor will have a team working with her in the way of radiologists, etc. Your husband is going to the best place for what he has going on. On my first initial visit to the Mayo, I had to hand carry in all of my medical records and films and they scanned them into my file there. Your husband needs to bring his test results for the mac, and his Ct scan, and anything else he had done recently. (if you have not already sent his records over) The tests they are likely to do are: bloodwork labs, sputem test, chest x-ray, and breathing tests, and final doctor office visit to sum up what the tests reveal and a plan for treatment. The doctor will compare results to that of his past doctor. Since his other tests are so recent, you may be able to get away with her just looking over what he has had done already and get opinion on treatment. You will be receiving an itinerary in the mail soon that will tell what tests are being scheduled. Your husband being a doctor himself can determine if he really needs re-testing and ask about that. They probably will definitely want to do a sputem test along with a suseptibility test unless they are confident that the lab that did his last one at diagnosis was a competent one. If his last tests were done well, maybe ask for them to be reviewed for a second opinion on a treatment plan and not have to repeat the tests. I hope you will let us know what you find out. Please tell your husband best of luck to him from his friends on connect.
Replies to "@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your..."
Trials for a new nitric oxide inhalant taking place in Canada now.
https://bronchiectasisnewstoday.com/2017/11/07/inhaled-nitric-oxide-thiolanox-pilot-trial-for-ntm-infections-to-start-in-canada/
I know what I'm about to say is going off on a tangent here. But Joan's question has brought up some interesting memories. A number of years ago I injured my knee and needed a surgery to replace a ligament. I was trying desperately to make appointments with a couple of the most senior orthopedic surgeons in my area to no avail. Everybody was booked. I ended up having to see someone who was about 25-30 years younger than those senior surgeons. I was very nervous and told my primary physician about it. She said the university orthopedic clinic was a very reputable clinic and they would not hire anyone who would not be top notch no matter what the age. Around the same time, a friend of mine told me her unpleasant experience with one of the senior surgeons that I wanted to see. He had sent her away saying that he would not want to operate on her because she was too old. This friend had the same knee injury, was several years younger than I was at the time she needed the surgery and was a marathon runner and was going on 100-mile bike rides regularly. She ended up finding another younger surgeon and had a successful surgery and recovery. When I relayed her story to my younger orthopedic surgeon, he said he would never turn anyone away as long as his patient was active and was motivated. He said age should not be a deciding factor but motivation to get back on our feet would be as far as he was concerned. I was very happy with the result of my surgery and have not had any problems since. Another experience I have over the years is that younger doctors tend to embrace and keep up with the new medical development and technology more eagerly than older doctors. With the type of lung diseases that we are having, any existing medical knowledge and treatment have not proven to be very effective. So anyone who is open to learn new knowledge and new technology should be someone who can benefit us in the long run.
I too have learned the moral of this story...older in medicine is not necessarily better...
@ unicorn
Please keep us posted
Wow fantastic news, they really are getting on with this quick smart, yehaaaaaa! Thanks @unicorn
@ling123, Well said Ling, my sentiments exactly.
@joan912, Again, Joan, you are a dear to help your husband. Please do keep us in the loop.
@boomerexpert , I hate to say this, but I live in a small town with very few pulmonologists, all but one is up there in age. They all tell all of their patients that they have either COPD or asthma. That's it, everyone is thrown into one big lung basket. No sputem tests are ever done and their equipment is old as the hills. I was told the same thing, but, no, I actually had MAC/bronchiectasis. That is why I travel 2 1/2 to the Mayo Clinic.
@windwalker I thought the Tampa Bay area was bad....where do you live?!
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Thank you, Terri. I think Dr. Scrodin should be a good one to see. I have been keeping copies of all my husband's blood labs and compiling them into one document. I've included the radiologist reports, too. His last sputum sample came back negative, but it might not have been a "deep" enough sample. His CT scan this time showed an additional area of bronchiectasis, now in the lower part of both lobes (before it was only in one lobe). I need to go to Kaiser and obtain a CD of his latest CT scan, but I have all the other items required. I will let you know what the results of his visit are.