Has anyone been worked up at Mayo?

I set up an appointment with mayo clinic on Sep 4 with. For NJH, seems they are slower in response and communication. I am an out of state patient for NJH so I will choose mayo clinc for now.

I just had my first appointment at Rochester Mayo on July 18th with Dr. Escalante. He was very thorough and took the time necessary to understand my situation. I self referred and had to wait about 4 months for the appointment. The day prior to seeing the doctor I had a CT and PFT. They tried to induce a sputum sample, but I wasn't successful so he ordered two collection kits to be sent to my home. After seeing me he ordered some add'l tests which were done while I was there. Results were delivered same day or overnight. After I got home I got the results of my sweat test which showed intermediate results for CF. Within a few days they scheduled me for genetic counseling. I will have a followup virtual appointment with Dr. E after culture results come in.

Mayo was easy to figure out once we got there. Everyone was helpful and capable. I really don't have any hesitation in recommending them.

Thank you
Good luck 🙏🙏

Thank you. Good luck 🙏

So did they follow up the sweat test with a genetic test for CF? Or what does intermediate results mean with the sweat test?

I was worked up at Mayo March of 2023 and was impressed with and grateful for the care. I’d had abnormal CT’s suggestive of MAC and the local pulmonologist went on medical leave. Penn’s pulmonary clinic appointment was a few months out, leaving me without a diagnosis or plan. I tried Mayo and was told to call on Mon afternoons or Tuesdays to try to snag a cancellation. That worked and I went a week or two later. They got CT’s, PFT’s, tried a sputum induction with RT (inadequate), did a bronch for sputum, taught me airway clearance, and changed meds-all in a week! That would have taken forever with the community doc and he hadn’t mentioned airway clearance. Best of all, once MAC culture was negative, she started me on Advair for asthma and a little cough I’d had forever resolved.
I was very happy with Mayo.

With the official bronchiectasis diagnosis, I was able to get into Penn’s bronchiectasis clinic (local) last August and am pleased with them as well.

I had real problem when doing Sprint Triathlons swim. This was rare until 2024 and started happening each time.

PCP referred me to for Pulmanary testing after some issues with CT. I had every breathe in/out type test. Then inhaled 3 mists, then did a walk up a latter tests. Pulmanary tests did not reveal asthma. However after reading the posts above I did not have the mucous tests, sweat tests, nor was it mentioned. None of the test duplicated the trigger I am now getting when doing swim portion of race. I train twice a week swimming a mile with no issues. The most common length of Sprint Triathlon swim is 1/4 mile.

I then met with Pulmanologist who said the tests did not reveal asthma. But no attempt to find out just what is causing. My PCP and I still think I have Asthma.

When swimming in race I use a snorkle because of neck problems. At some point in all recent races I feel like I cannot get enough air into my lungs. The feeling of I can breathe deep enough. Then I start coughing. The coughing is full of phelm and mucous from bronchial area. I have had to quit swim last 3 times out. I have done about 50 races since 2017 and did not start having problem until end of 2023 and beginning of 2024.

Not sure how to address this further but have upcoming visit with PCP. Any comments?

My comments are to contact pulmonary to ask for sputum culture along with chest CT. Perhaps you can accomplish both with PCP since you have an upcoming appointment.

Kudos to you on your athleticism!

I don't know much except what I've read on the internet. Maybe I have CF or maybe I"m a carrier? I will see a genetic counsellor on August 19th and hope to know more after that.

Thank you!