I apologize for the delay in my updates. Although there hasn’t been much positive news to share, I have a series of X-rays scheduled for tomorrow morning and an Injectafer treatment for tomorrow afternoon. My INR level fluctuated significantly. It started at 2.6, dropped to 1.7 a week later, then rose to 2.7 a week later, and I’ll be tested again on Thursday. Despite maintaining a consistent diet, my INR levels remain unpredictable.
At least all the test results are back, and we know what the issues are:
It appears to be a lengthy list, but it’s merely a list. The most pressing issue is that the two primary problems—bleeding and clots—have treatments that exacerbate each other.
The problem we’re grappling with is blood loss, which necessitates dietary adjustments to minimize stomach and intestinal issues. Stomach concerns arise from iron taken orally, as it is absorbed in the stomach. I had weekly iron-infused blood infusions leading up to the Capsule Endoscopy, but the last one caused an adverse reaction, so they need to discontinue those. Consequently, my iron levels were 7.4 g/dL on Friday, down from a peak of 10.6 g/dL. The healthy range is 13.5 to 17.5 g/dL. Therefore, we’re trying the Injectafer treatment to observe my reaction.
I can distinctly feel the difference between 7.4 g/dL and 10.6 g/dL. At 7.4 g/dL, I feel fragile and rely on food for energy. When my blood sugar was higher throughout the week, I lost 3 pounds. Conversely, I gain weight when my blood sugar is low, and I feel extremely hungry.
After reviewing my medical history, we’ve concluded that I likely had low iron levels since 2012. This was after three years of prednisone and subsequent doses of Levaquin, which can cause drug-induced immune hemolytic anemia. I’ve noticed a decline in energy and persistent fatigue since then. The side effects of these medications negatively impact hemoglobin levels. Since stopping these drugs, I’ve gained 75 pounds, and that’s the last time I recall feeling energetic.
The doctor believes I was low in iron in 2012 and that my levels have continued to decrease. Despite my strength, he often questions how I manage to keep going. He recalls how he still wonders how I managed to reach the emergency room when this all began. While he acknowledges that my activities are beneficial, he advises caution. However, when I recently informed him of my activities for the previous week, he suggested that I limit myself to about half of what feels acceptable. In the past week alone, I had walked 9 miles, lifted weights, removed a 45-foot-tall tree for Shelley’s daughter, and ridden a bike 220 miles, among other activities. Despite these efforts, he reiterated his advice to reduce my activity level.
Since the initial clots were discovered, others have formed. Last weekend, one formed in my right leg, leading to another trip to the hospital. Additionally, I’ve experienced some extraordinary chest pains that don’t seem to be a problem, but they still scare me when they occur. The first few times, I went to the emergency room and was examined. In one instance, my blood pressure was 174 over 130. However, a few hours later, it returned to normal, in the mid-130s over the low 80s.
I’m scheduled for surgery on October 25 with two main objectives. First, I want to assess the effectiveness of the medication regimen. Second, I want to initiate some endoscopic therapy on my esophagus and digestive system. They also intend to address the hernia issues. They mentioned that I’ll likely have surgery next spring, after the clot issue is resolved, to address the hiatal hernia issue.
It’s a lengthy and drawn-out process that should help me recover. After my surgery on October 25th, I haven’t had much to report. I might write again after two Injectafer treatments (one tomorrow and one on September 15th) to let you know how my iron levels and INR are doing.
I’m planning to drive to Colorado on the 21st. However, I might cancel that trip unless I’m sure the clotting issue is under control. I’ll take the camera and stop every 90-120 minutes for a 20-minute walk and picture-taking. That should add nearly 3 hours to the 12.5-hour drive, but it should minimize my concerns.
Anyway, I’ve been saying this a lot lately, and it just comes out of my mouth naturally: “I would rather die living and live dying.” I’m taking care of myself and following all the instructions from the four physicians I see regularly, but I don’t dwell on it too much.
Carry on my friends, carry on!
