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 read, and if the way I feel is correct, getting my iron up means more energy and sleep!

My Bronx D500 DV on the Long Haul Trucker

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 purchased a second Long Haul Trucker to ride with my girlfriend and not have the extra weight or Bionx boost.  Onat, I can exceed 20 MPH on the flats without the drag I get with the Bionx.  My assumption is correct.  With the new bike, I would ride the Bronx D500 when tired.  It may allow me to ride to work more often and get a solid workout.  Besides, I would leave the Bionx bicycle home if the weather is questionable.  The 30-speed ride should still be nice, even without the Bronx help.

I did get out a few times this week:

• September 11

  

  Surly Long Haul Trucker

  , morning 17.3 miles in 1:05:26
• 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!

Overall, I am better.  My INR last check was 2.2, so it is stable.  An odd occurrence happened at the previous appointment: the nurse looked at me as she took my pulse.  It was a confused look.  She proceeded to take my pulse a second time.  Again, she needed clarification, and I inquired.  She said my resting rate was 48 BPM.  That was nice!

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

Feels like progress

As previously reported, my weekly INR check was at 2.6, dropping to 1.7 and then up to 2.7, only to be 2.1 recently.  The good news is that I was above 2.0 in three of the last four weeks!  

I had the Injectafer treatment on the 6th and have another scheduled for Friday.  The Injectafer treatment is only 15 minutes long, but I did not feel as good afterward as I did after the 2.5-hour infusions previously conducted.  It is supposed to raise my iron level from 2 to 2.5 per treatment.  We will wait and see the results in a few weeks.

As I have DVT and Pulmonary Embolism issues, my employer upgraded my desk to a stand-up desk.   I stand for a significant amount of the workday.   It is an Ergot Ron Work Fit-TL, Sit-Stand Desktop Workstation.   My back was sore for the first week, but I forced myself to use it and wear compression socks.  I am less mentally tired when I stand.   I do not feel like I want to nap in the afternoon.

I have been riding my bicycle a little more, although half as much as I prefer.   I must avoid putting excessive stress on my body and work hard to maintain balance.  

As my 12.8-mile route is under construction, I need to settle for the 17.6-mile route for a while.  I am enjoying the longer route more as the road is much better, and the hill climbs are more subtle.  Some example rides include the following Strava links: 

https://www.strava.com/activities/1178892090 (A ride to work)

https://www.strava.com/activities/1143854942 (A 44-mile ride)

Below is a video of a foggy morning ride.  This bridge is closed until next July, so my ride is longer.

I have also been happy that I weigh a pound or less each week before the INR check.  I am not trying to diet, as I am focusing on medicine and my eating routine for my health issues, so that is a nice byproduct.

I also helped my girlfriend’s future son-in-law build a fire pit in his backyard.  The result was pretty good, in my opinion.

Very rustic rear yard pit!

With the illness, I have been working less, yet not going in as much on weekends, which means people ask me to help them with activities.  I am tired to the point that I want to go to work, as it is less stressful on the body.

The Superior 100 trail race was this past weekend.  I have run the course and volunteered for several years.  I have not attended the past three years and miss being part of the activity, although two things drove me away.  First, the allure of the smaller race, where you knew most of the runners and spent time supporting them.  Just like any well-organized race, the race had exponential growth.  It has grown even more over the past three years.  My last year was not fun as hundreds of people now went through the aid station, and as a volunteer, I had 4 to 6 hours of chaos, which was not enjoyable.  

The running community needs another 100-mile option to remove the pressure from that race.  There is such a demand that they have a lottery for entrants, which is both a blessing and a curse.  However, if there were a smaller race that limited entrance to 50 in the State of Minnesota in September, it would take the pressure off, and I would love to volunteer.  

My second reason for quitting the ST 100 was that the last time someone wanted to schedule a competing race, one of the avid runners disparaged me.  When I supported such a race, that person threatened to “punch me in the face” to shut up my support.  I have found that some of the most incredible supporters are bullies with low-class respect for people.  

The race organizer was diplomatic and not openly opposed to a competing race.  That is because the primary organizer is one of the most judicious and cares for people I know.  Like anything, your other supporters and friends who are billies often drive others away.  Again, another person who is a regular active participant in the Superior Races took it upon himself to alienate many, so I (and recently learned two others) quit supporting the race just because of the one JERK.  Again, miss the fall trip.

Anyway, I will continue to work on my health and see where that gets me in the next few months.  That is all that is mandatory.

Carry on, my friends, carry on!

Update - uphill but that is the right direction

Sorry, this has been a while, although there has been little to report that is positively known.  I have a series of X-rays tomorrow morning and an Injectafer treatment tomorrow afternoon.  My INR was at 2.6, dropping to 1.7 a week later.  Then, I was at 2.7 a week later and will be tested again on Thursday.  It is still all over the place, and I am keeping what I eat the same, but it is just up and down.

At least all the test results are back, and we know what the issues are: 

• Deep vein thrombosis 

• Pulmonary Embolism

• Eosinophilicesophagitis

• Angioectasias

• Anemia

• Hiatal Hernia

• Iron deficiency anemia due to chronic blood loss (defiantly in the stomach and intestines)

• Drug-induced immune hemolytic anemia

It seems like an extensive list, but it is only a list.  The most significant issue is the two primary problems have treatments that create problems for each other, the two being bleeding and clots.

The issue we are fighting is blood loss, which means using care for a diet to minimize stomach and intestine issues.  Stomach concerns arise from Iron taken orally as it eats in the stomach.  I had iron-infused blood infusions weekly for the past several weeks leading up to the Capsule Endoscopy, but the last one resulted in an adverse reaction, so they need to stop those.  Therefore, my Iron as of Friday was 7.4, where it had peaked at 10.6.  So, we are trying the Injectafer treatment to see how I react.  

I can tell the difference between 7.4 and 10.6.  At 7.4, I am fragile and turn to food for energy.  When my blood sugar was higher for the week, I lost 3 pounds.  I gain weight when it is low, and I am famished.

After a long history review, we determined I have probably been low on Iron since 2012 when I was coming off three years of prednisone and then the doses of Levaquin, which causes drug-induced immune hemolytic anemia.   I recall having less energy and fighting fatigue since then.  The side effect of those medicines is a negative impact on hemoglobin. I have gained 75 pounds since I stopped taking those drugs, and that is the last time I recall feeling full of energy. So, the DR thinks I was low in 2012 and just kept getting lower. I know I am a strong boy; every time I see him, he questions how I keep going like I did. He reminds me that he still wonders how I made it to the emergency room when this all started. He continues to say the activity is good but to use care. Although when I was in the hospital recently and informed him of my activities for the week prior, he did say for me to do about half of what feels OK. I had walked 9 miles, lifted weights, removed a 45-foot-tall tree for Shelley’s daughter, rode a bike 220 miles, and much more the previous seven days. Again, he said to tone it down.   

Since the original clots were found, others formed. Last weekend, one formed in my right leg, which resulted in another hospital visit. I also have had some extraordinary chest pains that do not appear to be an issue; it scares me when that occurs. The first few times, I went to the ER and was checked out. In one case, my blood pressure was 174 over 130. However, a few hours later, it was back to normal in the mid-130s over the low 80s.

I am having surgery on October 25 with a twofold objective. To evaluate the success of the medicine regime and to initiate some endoscopic therapy on the esophagus and digestive system. They also want to stabilize the hernia issues. They state I will most likely have surgery next spring, after the clot issue is resolved, to resolve the hiatal hernia issue.

It is a long, stretched-out process that should allow me to be OK. There is only a little to report after the October 25 surgery. I may write after two Injectafer treatments (One tomorrow and one on September 15) to let you know how the iron levels are and how the INR is doing.  

I do plan on driving to Colorado on the 21st. Now, I may cancel that trip unless I know the clotting issue is under control. I plan on taking the camera and stopping every 90-120 minutes for a 20-minute stroll and picture-taking. That should add nearly 3 hours to the 12.5-hour drive but minimize concerns.

Anyway, in words I have spoken so often recently that it naturally comes off the tongue, “I would rather die living and live dying.”  I am taking care and doing everything directed by the four physicians I see all too often, but I do not dwell on all this much.

Carry on, my friends, carry on...