Hello Bill and Carole and happy new year to you guys and your family! I wanted to tell you about the last visit I had at Mayo realizing I never did share with you the total experience. Even though I have complete faith in Mayo and really like the way they do things I was in complete shock after my follow up visit with the Immunologist. First off I want to say she (Dr. Weiler) was the best, I couldn't ask for a better initial contact.
My first meeting with the pulmonologist was positive and both Joan and I came away with good vibes. She ordered testing for me the likes of which I have not previously had and we were encouraged. When I say blow test or stress test these were tests that I had in addition to an oximetry test as well as a CT scan. Now you guys know these are standard tests but they were administered differently than anything I had experienced in the past, except of course for the CT scan which was done in the same manner. To try to shorten this up a bit I will tell you that in the stress part of the test my oxygen level went down to 86% after 2-2 1/2 minutes, my resting levels were OK. The oximetry test is an overnight test that measures the level of oxygen in the blood stream all during the night. My oxygen levels overnight were below the target rate of 90% for 70% of the time. The pulmonologist gave the respiratory therapist authorization to write a prescription which she did based on the test results. The prescription was for nighttime oxygen. We waited for several hours for the Dr. to sign off on the prescription and finally decided to go home expecting that the Dr. would call or mail the prescription. We got home and the Dr. called and said she wasn't going to sign the prescription, she wanted me to get tested for sleep apnea. I told her I wasn't going to do that, I had been through that several times in the past and that didn't take care of the problem. She said OK, that's your choice.
I couldn't believe what I was hearing. Upon meeting with the Immunoligist we told her what we thought about that and she picked up the phone and called the Pulmonologist to say I wanted the prescription for oxygen and she said she wouldn't sign it.
There is a big difference between sleep apnea and lung disease.
Oh well, this Friday I go to see my primary Dr. at the VA hospital to follow up with him on all of this. Meantime, I'm doing OK, taking the meds for the angiodema and taking my inhaler like a good boy. I'll keep in touch.