Ellis Health Update - 170929

At the time of the doctor's visit on 12 September I was very weak, prone to collapse whenever I tried to stand. In fact I had to resort to a wheelchair for the trip from the hotel van to the doctor's office. We at first thought that my weakness was caused by the increased pain medication and reduced it accordingly, alternating between Tramadol and Tylenol on a three-to five-hour frequency. That did not significantly affect my pain level which, by the way was now quite tolerable. However, further investigation indicated that the weakness was caused by a drop in blood pressure when I stood and I was given a new prescription for my low blood pressure.

I returned for another doctor visit today (14 September) and found that things seemed to be working well. I had a new chest x-ray, a blood test and walking test (apparently standard tests for doctor visits at Baylor Clinic) The doctor made a few further adjustments to my medication, mainly stopping one of my blood pressure medications (Amlodipine) and scheduled me for a return visit on 19 September. I was also told that I may be allowed to return home to Arizona late next week. However, I will need to fly back to Houston after about a month for further testing.

After today's visit to the clinic, I slept deeply for almost two hours and then went to the Olive Garden for an “eat one, take one home” special. We now have several days worth of food tucked away in the refrigerator.

On 19 September, Doctor Sugarbaker was detained out of town with a family emergency and I saw his PA. She found things to be looking good but asked that I return on 21 September to meet with Dr Sugarbaker before being released.

The 21 September doctor visit was scheduled for late in the morning and we would need to take the 1000 shuttle to the Clinic. We informed the motel that we would need to stay another day or two. Rosemary had informed them earlier that we might need to extend our stay. However, despite verbal assurances that an extension would not be a problem, we now found that they had already booked our room and were full up; so we were required to move to another motel. We thus had to pack all of our gear and place it in a locker before catching the shuttle. We barely made it. I was given the tentative OK to travel back home; however I was referred to a cardiac specialist to make sure my weakness was not related to a heart problem and the release was contingent on his findings. After an EKG and an examination, the doctor declared my heart to be “absolutely normal.” He did suggest that I wear support hose, especially during the flight back to Phoenix, to alleviate the sudden changes in blood pressure I have experienced when standing up. Luckily, they were able to schedule for later that same day. The down side of this is that we were on the go from early in the morning until about 1700.

We spent the night at the Holiday Inn and caught the airport shuttle, took a morning flight to Phoenix on Southwest and then the Ace Express to Cottonwood. The flight to Phoenix followed by a 2.5-hour shuttle trip to Cottonwood was exhausting and left me feeling very lethargic for the next couple of days. However, I am now steadily improving: My appetite is better (meals are no longer just a duty to be performed), I walked about 0.4 miles along neighborhood streets yesterday (I used the walker on the street but have managed to do without its assistance within the house)and I have no significant pain so long as I hold to my pain medication regimen (0200: 1 Tylenol, 0800: 1 Tylenol, 1400: 1 Tylenol, 2000: 1 Tramadol).

Day before yesterday, I did feel some nerve pain and resumed taking Gabapentin (presently taking one a day which seems to work well). Although essentially pain free with the medication I am taking, I am still very weak and need a lot of rest. I usually go to bed about 2100 and sleep for around 10 hours, interrupted by a few bathroom breaks. After breakfast, I normally do a little clerical work, catching up on the six-week stack that piled up while we were in Houston. If I still have enough energy after that, I add a few words to this document. Otherwise I take a 1.5- to 2-hour nap, eat lunch and do my daily walk around the neighborhood. Yesterday (27 September) I stretched the walk a bit to make it an even half-mile. Today I saw Doctor Howland, my primary care physician, in the morning and reviewed the medications I am taking.

Keeping up with medications has become quite a chore while being treated by Doctor Sugarbaker at the Baylor Clinic, Doctor Howland at Northern Arizona Healthcare and Doctor Lindquist at Arizona Oncology. Daughter Diana got me organized initially with a spreadsheet before she left Houston. Even with that it was taxing my abilities to make sure I took everything I was supposed to and at the proper time. Just when it all started to make sense, I would be overtaken by fatigue and have to stop for a nap. Luckily Rosemary was there with her orderly mind. She took Diana's spreadsheet and all of my pill bottles and soon had everything organized. I do keep track of my pain medications; otherwise, I just take he pills placed in front of me.