TL;DR: Mayo visit was very good. No major worries.
The Details:
Since last posting on this blog, I am pleased to report that adding the Pravastatin back in has really helped ease a lot of the all-over inflammation and pain. I live on Tylenol; but, have reduced it to 650 mg three times a day. I can't miss. If I miss, I feel it.
I was at Mayo last week on Tuesday and Wednesday. My son joined me - it was nice to have company in between appointments and in the evenings. The visit focused on four areas (with results):
1. Am I allergic to Penicillin? I've had a lifelong allergy on my chart. Mom was allergic too. It turns out that 95% of people told that they are allergic are actually not allergic. This opens up a huge arsenal of drugs as I age. According to the Allergist at Mayo, just having "Allergic to Penicillin" in one's chart equates to longer hospital stays and increased post-surgical complications. So I did a 1 hour challenge where I was given a dose of Amoxicillin and watched carefully. No allergic reaction, therefore my odds of an allergic reaction are the same as the general population. The notation of the allergy has been removed from my chart at Mayo. I'll have to have it removed everywhere else.
2. Bone health. I have had osteoporosis due to DEXA scans in the osteopenia range plus fractures in my spine causing loss of height (5'6" - I was always 5'9"). I started Alendronate 2 years ago. The DEXA scan shows 9% increase in bone mass. I'll stay on the drug for three more years then take a drug holiday. I return to Mayo in three years for follow up.
3. Thyroid Cancer follow-up. I had a neck ultrasound (which was clean) and blood work. My cancer marker (Tg) is undetectable (hooray) and my TSH and Free T4 show I'm taking enough medication. I was hoping to meet with my provider to discuss the tremors in my hands and neck [likely essential tremors - runs in the family] which can be aggravated some by taking too much levothyroxine. That conversation will have to wait until August 11th and will be virtual. She was not able to be in the office for my appointment, so we rescheduled. Thankfully I can read my ultrasound and blood work myself and know how to interpret it. So, nothing to worry about...but we may discuss taking a touch less levothyroxine to see if it helps the tremors.
4. Open thoracotomy follow-up and lung capacity. The CT scan shows the same nodules we're tracking and everything looks good. The plan is another two scans at 6 month intervals which gets me to the two year mark from surgery. Then we'll scan every year for 10 years. I can scan locally and meet virtually. I'm hoping those nodules just sit and do nothing. It's a bit unnerving because the 12 cm solitary fibrous tumor of the pleura was tracked for a while as a seemingly benign and stable nodule. But, trusting in God is key and I move forward with that trust [I can hear my mother in my head saying "pray with confidence."] As for the lung capacity - I had a lung function test but don't have results until tomorrow. The plan is to discuss (virtual appointment) how I can improve my lung function because I still seem to get hit pretty hard with upper respiratory infections. I had my first serious "cold" in early July while on vacation. Bob had it too. He had a normal progression of a head cold. I had low oxygen saturation (80% at night), bronchitis (diagnosed at a New Jersey E.R.), and needed a breathing treatment. After a week, I was able to get antibiotics and that helped me turn the corner quickly. But I was very sick - coughing up phlegm tinged with blood, later hacking up dark green phlegm, etc. I was wheezing too. My lung CT shows so much scarring from several pneumonias and having had COVID 4 times. I'll know more tomorrow.
For anyone heading to Mayo: I highly recommend the Broadway Plaza. https://rochesterbroadwayplaza.com/ Since Alek was with me, I wanted to get two hotel rooms. For the same price (actually a bit less) I got us a two bedroom furnished apartment with 2.5 baths, full kitchen and even a washer/dryer. It was more than we needed, but it was comfortable and reasonable. The skywalk connected us to Mayo so we never had to go out in the excessive heat and humidity. We walked everywhere, even to dinner at Lumi (highly recommend) https://lumimn.com/lumi-cuisine/
Another benefit of staying there (other good options would be the Hilton right there or the Marriot nearby) was the parking. Mayo is undergoing a MAJOR transformation. Construction is underway and the Damon parking garage has been torn down [and unfortunately the Chihuly glass exhibit for fear it would break with the nearby demolition] and parking is at a premium. Pretty much every nurse greeted me with "were you able to find parking?" Well, at Broadway Plaza, they have valet parking and I chose that option. Alek self parked in the same garage. We had no issues...but we were a few blocks from Mayo. As you get closer to Mayo, it's a parking nightmare. The employees have had to give up their parking garage for patients. Employees have to park in parking lots around Rochester and get bussed in. So, by staying a few blocks away and at the Broadway Plaza, all this was missed! Another plug is for the Irish Pub called the Olde Brick House that connects to Mayo via the subway. Great food. https://oldebrickhousepub.com/rochester-menu/
On another front, I'm working with my rheumatologist in Wichita and had a biopsy done to check for Sjogren's disease. I doubt I have it and it was more to rule it out. I'm awaiting results...but it would explain a lot of my mysterious symptoms.
Last note: In my prior post I mentioned that I was hoping the school would find a new Principal. Unfortunately, the teacher shortage also caught up with the school and between two teachers moving on to wonderful opportunities and my departure, the Diocese elected to close the school. I'm still involved helping to wrap things up for the school nutrition program, cleaning out my office and distribution of the yearbooks. I pray all the students do well at their future schools...carrying the love of Jesus Christ with them as they go.
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