So nice, I bought it twice

I am slightly better and attribute that to the Injectifer (ferric carboxymaltose injections) treatments. I had my second treatment on September 15. From everything I've read, and if my feelings are correct, increasing my iron levels means more energy and better sleep.

With more energy, I have been riding more and have gained strength. While I enjoy riding my Bionx D500 DV on my Surly Long Haul Trucker, it is frustrating that once I hit 20 MPH, the motor has a significant drag. I LOVE the Long Haul Trucker ride, but it is difficult to remove the Bionx system if I want to ride it without the weight and assistance of the Bionx system.

Therefore, I bought a second Long Haul Trucker to ride with my girlfriend, thereby eliminating the extra weight and the need for a Bionx boost. I can exceed 20 MPH on flat terrain without the drag I experience with the Bionx. My assumption is correct. With the new bike, I’ll use the Bronx D500 when I’m feeling tired. This might enable me to ride to work more frequently and get a solid workout. Additionally, I’ll leave the Bionx bicycle at home if the weather is uncertain. Even without the Bronx’s assistance, the 30-speed ride should still be enjoyable.

Surly Long Haul Trucker

Surly Long Haul Trucker with Bionx

 
I did get out a few times this week:

• September 11, afternoon 13 miles in 0:47:47
• September 13, morning 16.8 miles in 0:58:26
• September 13, afternoon 17.7 miles in 1:07:50
• September 14, morning 16.9 miles in 1:04:40
• September 14, afternoon 20.1 miles in 1:15:58
• September 17, day 17.4 miles in 1:42:06

Therefore, 119.6 miles for the week. That is good, and I do not feel overly exhausted.

I bought a Bluetooth speaker for my bicycle and love my choice. The sound is excellent, and it also has a horn. It's the Venstar S404 speaker, and it sounds great!

I’m better. My INR is stable at 2.2. At my last appointment, the nurse looked confused when she took my pulse. She retook it and asked for clarification. I asked about my resting rate, and she said it was 48 BPM.

Things are better.  So carry on, my friends, carry on!  

Update

As previously mentioned, my weekly International Normalized Ratio (INR) check showed 2.6, then dropped to 1.7, and later increased to 2.7, only to be 2.1 recently. On the positive side, I managed to maintain an INR above 2.0 in three of the last four weeks.

I received the Iron Injectafer treatment on the 6th and have another scheduled for Friday. Although the treatment is relatively short, lasting only 15 minutes, I didn’t feel as rejuvenated afterward as I did after the 2.5-hour infusions I had previously undergone. The therapy aims to raise my iron level by 2 to 2.5 points per treatment. We’ll have to wait and see the results in a few weeks.

As I have been diagnosed with Deep Vein Thrombosis (DVT) and Pulmonary Embolism, my employer has upgraded my desk to a stand-up desk. I stand for a considerable portion of my workday. It’s an Ergotron Work Fit-TL, Sit-Stand Desktop Workstation. Initially, my back was sore for the first week, but I persevered and made sure to wear compression socks. Surprisingly, standing has reduced my mental fatigue, and I don’t feel the urge to nap in the afternoon.

I’ve been riding my bicycle a bit more, although not as much as I would like. I need to be cautious and avoid putting too much strain on my body, and I’m working hard to maintain my balance.

Since my preferred 12.8-mile route is currently under construction, I’ll settle for the 17.6-mile route for now. I’m enjoying the longer route more because the road is much better, and the hill climbs are more gradual. This morning, the fog limited visibility to under 500 feet. Here are a few example Strava links of my rides:

        A 17.3-mile ride to work - https://www.strava.com/activities/1178892090

        A 44.5 mile ride - https://www.strava.com/activities/1143854942

I’ve also been pleased to notice that I’ve lost a pound or less each week before my INR check. I’m not dieting; I’m primarily focused on managing my medication and maintaining a healthy eating routine to address my health issues. So, this weight loss is a nice bonus.

Additionally, I assisted my girlfriend’s future son-in-law in constructing a fire pit in his backyard. In my opinion, the result was quite satisfactory.

Due to my illness, I’ve been working fewer hours and taking fewer weekends off. As a result, people have been asking me to help them with various activities. I’m so exhausted that I yearn to go to work because it’s less physically demanding.

This past weekend was the Superior 100 trail race. I’ve been running the course and volunteering for several years. However, I haven’t attended the race for the past three years and miss being a part of the event. Two things have driven me away. First, there’s the allure of the smaller race, where you get to know most of the runners and spend time supporting them. Just like any well-organized race, the Superior Trail 100 has experienced exponential growth. It’s grown even more over the past three years. My last year was particularly unpleasant because hundreds of people now go through the aid station, and as a volunteer, I had to endure four to six hours of chaos, which was not enjoyable.

Hey, the running community could really use another fall 100-mile race to ease the pressure on the Superior Trail 100! There’s such a buzz around it that they even have a lottery for entrants, which is both a blessing and a bit of a headache. However, if there were a smaller race in Minnesota in September with only 50 spots, it would definitely take some of the heat off, and I’d be thrilled to volunteer!

Another reason I decided to quit the ST 100 was that one of the really dedicated runners wasn’t too happy when someone wanted to schedule a competing race. When I supported such a race, that person even threatened to “punch me in the face” to shut me up! It’s just that some of the most amazing supporters can be a bit rough around the edges.

The race organizer was pretty diplomatic and didn’t openly oppose a competing race. That’s because the principal organizer is one of the most thoughtful people I know. Like with anything, your other supporters and friends who are a bit of a bully can sometimes push people away. Again, another person who’s a regular at the Superior Races took it upon himself to alienate many, so I (and, recently, two others) decided to stop supporting the race solely because of that one person. I miss the fall trip, though!

Anyway, I’m still working on getting my health in shape and seeing where that takes me in the next few months. That’s all that’s really important right now.

Carry on my friends, carry on!

Update - uphill but that is the right direction

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:

• Deep vein thrombosis 
• Pulmonary Embolism
• Eosinophilic esophagitis
• Angioectasias
• Anemia
• Hiatal Hernia
• Iron deficiency anemia due to chronic blood loss (defiantly in the stomach and intestines)
• Drug-induced immune hemolytic anemia

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!