Very little change

Apart from health concerns, I have been experiencing significant frustration with an issue related to my new bicycle. Upon initial purchase, I encountered a rough railroad crossing and inadvertently bent the rear wheel slightly. Consequently, I had the wheel professionally rebuilt. However, since then, I have discovered a recurring problem with the rear spoke, breaking it approximately every 50 miles. To date, I have experienced the breakage of seven spokes. The individual responsible for rebuilding the wheel tightened the spokes as they consistently failed at the nub. I must cease attempting to repair the wheel and seek assistance from a professional bicycle wheel builder. When I initially inquired about this issue from the retailer where I purchased the bicycle, they assured me that they could perform the repair, although they do not undertake this task frequently. Is this my initial mistake?

Despite the challenges, I have managed to complete a few rides to work, which has been beneficial. However, I am experiencing some fatigue and leg soreness. Additionally, walking has become difficult due to swelling in my ankles. My condition improves on days when I ride the bicycle, while the pain intensifies when I refrain from riding.

Regarding my health status, the cancer testing results are negative, indicating that the bleeding they are investigating may be elsewhere. The upper gastrointestinal (GI) exam revealed a bleeding hernia, but not to a level that would cause anemia. I have not yet received the results of the capsule endoscopy, which has been 12 days since the procedure. Surprisingly, I have not heard anything yet. Additionally, I did not observe the camera pass through the GI tract, which I am uncertain is a significant concern.

My International Normalized Ratio (INR) decreased from 2.6 to 1.7 over a week. We adjusted the dosage, and the follow-up two weeks later was 2.3 on Friday. This indicates that the medication is gradually stabilizing my condition. I understand that I experienced severe bruising, so I am curious if this is a positive sign.

My hemoglobin level is 10.1, which is a slight decrease. The doctor recommended an infusion of Inflectra, as they believe that the iron capsules are damaging to the stomach. I have experienced intense stomach pain.

I plan to retrieve my bicycle tomorrow and go cycling this weekend. The weather is expected to be favorable for the NDSU Bison football game and the State Amateur Baseball event on Saturday. I plan to work 10-15 hours, as this illness has affected my work, and we need to catch up. I’m concerned about the health implications of this job.

Either way, I am alive, but I need clarification about the issue I am fighting. The problems are:

1. Deep vein thrombosis (DVT)
2. Significant Pulmonary Embolism
3. Anemia
4. Eosinophilic esophagitis

Now, we need to know how to treat the combination of issues.

Carry on my friends, carry on!

Big change in life today

Not really for me, but for my girlfriend, her daughter (and husband), and her granddaughter. Actually, maybe even for me! When Shelley and I first met, I was number 8 on her priority list. Over time, I climbed up to a number 4 priority. After today, I’ll be number ten, which is totally understandable. Today, this adorable little family of three (below) is growing to four!

This little 2.5-year-old girl (below) is going to have a new baby sister. She’ll no longer be the only one getting all the attention and ice cream. She’ll have to learn the hard way what sharing means for little ones. I hope she can adjust. I hope Shelley can keep up, as she loves being Grammy so much and can’t get enough time with her grandchildren!

Unlike when the little girl above was born in Cincinnati, Ohio, my girlfriend had to book costly flights to travel 1,000 miles away for her birth. But now, they live close by. So, for three days, we’ll be watching this bundle of energy and happiness while mom gets some rest and dad gets ready for the significant change.

I’m planning to practice my camera skills later today and try to snap this family of four on a special day. We’ll take lots of pictures every day and hope for the best. Having a child is challenging, and raising one is even more so. Adding another child to the mix brings joy and stress. I’m just praying for the best because they’re a wonderful couple, and the older sister is truly special.

 Carry on my friends, carry on!

What if I don't wake up tomorrow?

Have you ever wondered, “What if I don’t wake up tomorrow?” Does that thought ever cross your mind? With the crazy President some foolish people have elected, that thought may be more prevalent than we realize!

As I go to bed, I have this thought every night due to my recent health setback: I am taking each day as a new opportunity, even though I am also getting things in order. I might be selfish or peculiar because I don’t worry about how others will cope if I don’t wake up. Most people are doing just fine without my presence on Earth. I am there for them when they need a strong arm or a shoulder to lean on for emotional or physical support.

Missing humans are a part of life, whether it’s a spouse leaving, a child growing up, or a friend who dislikes you. We’ve all experienced this, and life continues. My goal is to sort through old things, gather financial documents to minimize estate issues, and leave work with precise information on completed tasks and next steps for easy project progression. If I don’t wake up, I want no burden on those left behind.

While there’s no definitive proof that I won’t wake up, several factors contribute to potential conflicts. Deep vein thrombosis and pulmonary embolism always carry inherent risks. Pulmonary embolism can also lead to pulmonary hypertension, a condition characterized by excessively high blood pressure in the lungs and the right side of the heart. With numerous obstructions in the arteries within my lungs, my heart has to exert greater effort to pump blood through my vessels. This increased blood pressure within these vessels and the right side of the heart can weaken my heart. I visit the clinic twice a week for blood draws and monitoring, and for the first time in my life, my blood pressure consistently stands at 10 to 15 percent higher than it has been in the past decade.

I’m scheduled to see the heart specialist again next week. This is because I’ve been experiencing chest pain at least every other day, which is new and unexplained. They’ll also perform another CAT scan, and there’s a possibility that they might consider clot removal surgery. A few weeks after my hospital stay and warfarin treatment, there was a concern about a new clot. This may become more crucial if the heart specialist discovers any new issues.

Additionally, I’ll have the Capsule Endoscopy on Thursday to try and identify the bleeding that they suspect is causing my anemia. While it’s a straightforward procedure, I can’t help but feel apprehensive about a 360-degree camera passing through my body. Sometimes, it doesn’t pass, which is a concern. I’m hoping the camera passes through without any issues.

Life is quite peculiar, and going to sleep becomes more difficult when you’re constantly wondering if you’ll wake up in the morning. I’m certain I’ll wake up and everything will be fine, but I’m just tired of all the uncertainties.

Carry on my friends, carry on!

The importance of Iron

I’ve been researching blood clots and low iron. A study by Imperial College London found that people with low iron levels have a higher risk of dangerous blood clots. A survey suggests that treating iron deficiency may prevent lethal blood clots. This made me feel better about my clots, but I realized that iron is now my primary focus.

My recent blood test showed a hemoglobin level of 10.2 g/dL. I feel better because of the increase in my iron levels. I rode my bike to work for two consecutive days (14 miles each way) and felt slightly tired by the end of the second day. I've noticed that I’m much less fatigued on rides than I was in the past year.

My body needs iron to make hemoglobin-rich red blood cells that carry oxygen from my lungs to my muscles. Endurance athletes adapt to training by increasing blood flow and producing iron-rich red blood cells, which help them sustain their physical performance. This maintains hemoglobin concentration stability, but using more iron may deplete reserves, leading to problems. I learned this over two years ago.

Research by Dr. Laura Garvican at the University of Canberra (Australia) reveals that iron’s benefits extend beyond red blood cell production. It also plays a crucial role in energy metabolism, immune function, and brain processes. Low ferritin levels, a marker of iron reserves primarily stored in the bone marrow, suggest that the body prioritizes hemoglobin production, potentially compromising iron’s essential functions if iron supply is limited.

Athletes, especially endurance athletes, struggle to maintain iron levels due to several reasons. Endurance training stimulates the production of red blood cells, thereby increasing the demand for iron. Repeated jarring foot strikes in sports like running can physically break red blood cells. Heavy sweating and gastrointestinal bleeding also lead to iron loss. While minor bleeding may seem insignificant, it can have a significant impact over time.

A recent study by Florida State University researchers, published in the International Journal of Sports Nutrition and Exercise Metabolism, found that intense workouts increase hepcidin levels, which partially block iron absorption. Hepcidin peaks three to six hours after exercise, so Dr. Garvican suggests taking iron supplements first thing in the morning on an empty stomach or immediately after a workout before hepcidin levels rise.

I would take more iron and read that too much iron is as harmful as too little. I also learned that diet influences the body’s ability to absorb iron: Vitamin C aids absorption, while coffee and tea can hinder it.

I should pay more attention to my iron intake, but it doesn’t seem to make a difference. However, could iron infusions be the solution? I’m uncertain, but I’m optimistic. I’ve been feeling better, at least for the past three days. I’ve learned that low iron levels can quickly ruin a great day, and I’ll cherish this positive feeling for as long as I can.

As I close, I found this old photo. Who could this be? He needs help with those teeth!

Carry on my friends, carry on!

Update

My INR has finally surpassed 2.0, which means that step is now under control. I cannot provide a detailed account of the mental or physical differences I have experienced.

As a bit of fun, I recently found a 37-year-old 
picture from my early college tennis days.  
Wow, how things change!

However, I can share some observations regarding my iron levels. When my iron levels are elevated, I sleep soundly and experience less lethargy. As a reminder, I was diagnosed with anemia, but I was never adequately informed about the severity of this iron disorder. The primary focus was on the blood clots in both lungs and one leg. A physician never told me or provided any educational materials that highlighted the dangers of untreated anemia, such as the genuine risk of a heart attack.

Reflecting on my past few years, I now recognize that many of the ailments I have endured, including fatigue, foggy thinking, poor memory, joint pain, and headaches, can be attributed to anemia. I have even consulted a heart specialist three times, and they identified several issues.

My understanding of anemia was limited. It could cause fatigue and prevent me from donating blood. The key factor that finally clarified my situation was my strong desire to chew ice. I stumbled upon this information while curious about the reason behind my craving for crunchy ice. It was an annoying habit to some, and I had adopted it almost entirely. I had become practically obsessed with eating ice. I kept an iced beverage in my hand at all times. I even started considering the best places to find the finest ice.

After my diagnosis, I read that “eating” ice could be a sign of severe Iron Deficiency Anemia (IDA). I learned about the other symptoms and have been experiencing almost all of them. Along with the ice, I consumed a large Monster Energy Drink each morning. I was addicted to caffeine, and in retrospect, I now realize that it was the only thing that enabled me to get going in the morning and maintain my energy throughout the day. I also learned that dairy products, calcium supplements, and certain types of fiber can interfere with the absorption of iron. I had never heard of this, so I was completely unaware. I only discovered it when I quit my caffeine habit, thinking it was causing my heart to race, and found that without it, I couldn’t make it through mid-morning, much less the rest of the day. My energy level was at zero, and I felt like I was on the verge of collapse. Little did I know that I was.

During my research, I discovered www.IronDisorders.org, the website of the Iron Disorders Institute (IDI). This website provided valuable information that could have led to earlier medical intervention and prevented the near-fatal blood clots.

The website highlighted that low hemoglobin alone is not sufficient to diagnose an iron deficiency. It emphasized the importance of measuring ferritin levels before initiating iron supplementation. Additionally, it clarified that certain conditions and infections can cause hemoglobin levels to decrease, but iron stores may still be elevated. It is crucial to avoid iron supplementation in individuals with iron overload, as it can be extremely dangerous and even fatal.

In summary, my iron level has significantly improved from a low of 6.1 to nearly ten after the most recent infusion and pill-taking over the past four weeks.

Carry on my friends, carry on!

Comments from my original blog - I merged the blogs.

wildknits

Thanks for the update. Holy heck! What a journey - but now, you are on the way to recovery. Glad to hear your INR is finally within goal range. I hope you can get off the shots soon (or possibly already).   Now, figure out what led you to this state. Could it be related to the issues you experienced with infections in the past? Friday, August 4, 2017, at 10:45:12 PM CDT

LDP

Lisa, Good thought. I assume they are aware of my history, but I will review it at the next appointment to ensure they are fully informed. I understand that the medicines that I had to take are very, very hard on the stomach.  Thanks for the thought.  Saturday, August 5, 2017, at 9:12:31 PM CDT

wildknits

Although that history is documented in your medical records, it is beneficial to bring it up and ask if these issues could be related. It can be challenging for medical professionals to thoroughly review a patient's records within the allotted time. It is always good to advocate for yourself and ask about connections. Much of our health is interconnected, with one thing leading to the next or making us more susceptible to an illness.   Friday, August 11, 2017, at 12:39:42 AM CDT

Felt Great - broken spokes

On Thursday, I decided to cycle to work. I felt better, but I was tired of nursing and no longer enjoying anything. The doctor said I could participate in the activity at a level I’m comfortable with. However, they must understand that my comfort level is much higher than usual. Those who’ve completed ultra-marathons know what I mean.

In February, I shared a post about the new bicycle I had ordered but hadn’t received yet. I upgraded the electric assist to one with more torque and range. Additionally, I bought a new bike, the Surly Long Haul Trucker, which is a significant improvement over my old (2006) Cannondale Quick 5. Some people might think electric assist is cheating, but I still need to pedal and maintain a good heart rate to get a workout. I’ve included an example ride with heart rate stats at https://connect.garmin.com/modern/activity/1878980545. For that 12.72-mile, 48.5-minute ride, my average heart rate was 127 BPM, with a peak of 161 BPM. The assist helps me go about 3 MPH faster and makes the hills much easier to climb. I rarely use any assistance on flat ground.

Now, it’s not a secret that I’m a heavier guy. When I bought my Fuji, I had a custom wheel made for it, and it has never broken a spoke, even after over 5,000 miles. However, I recently found two broken spokes on the Bronx rear rim, which was frustrating. I’ve even taken special care to avoid bumps. I was thinking about the words on the frame, “Fff fatties fit fine,” and realized that it means tires, not me.

On Friday, I had more blood work. Despite taking the same medicine dose, my INR dropped 0.6, erasing much of my progress above 2.0. My hemoglobin also dropped by 1.8. I left the hospital with a 6.1 (15+ desires) and an increase to nearly 9.0, but now I’m back below 7. I also had pain in my right calf, and an ultrasound found a new clot. Despite being on blood thinners for three weeks, they suggested I go to the hospital for additional tests. I’m often confused about this.

Until we resolve this issue, I will continue to administer 0.9 mL of Lovenox twice daily, take 10 mg of Warfarin once daily, and 65 mg of iron twice daily.  Let's see where the next week takes me.

All you quiet dreamers, carry on!

Released

Having been discharged from the hospital two weeks ago, I am still grappling with the challenges of my condition. Upon my admission, my hemoglobin level was 6.1 g/DL, which is significantly below the desired range of 15 g/DL. My International Normalized Ratio (INR) was initially 1.12, but after 15 days of Lovenox injections and 10 mg of Warfarin, my INR has improved to 1.8 g/DL, still below the target range of 2.0 to 3.0.

Despite my efforts to adhere to my medication regimen, I continue to experience exhaustion and sleep disturbances. While I did experience restful sleep for three days following the iron infusion, I have since been plagued by abysmal sleep and fatigue.

The combination of my medical condition, the demands of my work, and the concerns for my family members has taken a toll on my well-being. I find myself struggling with individuals I hold dear, making decisions based on their actions rather than my own best interests. While many agree that reacting to others’ actions is not advisable, I find myself in a situation where I feel compelled to intervene.

I am scheduled to meet with my pathologist next week to discuss this matter further. This issue, coupled with the stress of work and the concerns for my family, has become overwhelming. I am determined to find a solution that addresses both my medical needs and my personal relationships.

In one instance, a relationship deteriorated significantly after 16 months. One party is willing to abandon substantial life goals and objectives in an attempt to salvage the relationship, despite the evident toxicity and lack of healthiness. While this behavior may seem illogical to a rational individual, it is challenging to intervene when emotions become overwhelming. This situation is reminiscent of the distorted perceptions held by some individuals who believe their president is the most honest and fair person in the world, despite contradictory evidence. Such beliefs can cause distress to those who care about the well-being of the individuals involved.

On a positive note, this illness has resulted in a weight loss of 25 pounds. While further weight loss is possible, other priorities must be considered. It is crucial to follow the recommendations of medical professionals and those with whom I discuss these matters, rather than succumbing to impulsive actions driven by emotional turmoil. If others could recognize the importance of logic, it would lead to improved outcomes for everyone involved.

All you quiet dreamers, carry on!

Comments from my original blog - I merged the blogs.

wildknits

Thanks for the update! Hopefully, your hemoglobin has come up a bit since your hospitalization and iron infusion (blood transfusion, too?). I am curious if they have been adjusting your warfarin dose at all in the past 2 weeks (sorry - occupational hazard, I manage anticoagulation patients - warfarin patients - as part of my job). Usually, we adjust the dose of Warfarin to help someone get to their goal range as quickly as possible and get them off the Lovenox shots. Then, we try to determine the proper maintenance dose to keep them in range. It varies for different people and can take some time to decide. It is influenced by many other things (diet, exercise, health status, alcohol use, supplements). You are right in that it is stressful to have to sit back and watch those we care about make choices that seem bad to us. But as adults, we get to make our own choices, bad, good, or indeterminate. All are part of free will and autonomy. Sorry that you are going through this while also dealing with a major health crisis of your own. Hang in there! Wednesday, July 26, 2017 at 11:43:31 PM CDT

LDP

Lisa, I started with 5 mg for five days, and the count did not climb at all. We then increased to 7.5 mg for two days and subsequently decreased to 5 mg for three days, a slight increase. Then they went to 7.5 for three days and 10 for two days. Then we went with 10 mg, and I am getting checked tomorrow. So tomorrow brings us closer to what we expected. 

wildknits

I see from your other post that your INR has not increased, and they have found a new clot. Frustrating. I have patients who are on 12.5 - 15 mg of Warfarin (alternating) weekly. You may need a higher dose. It does make me wonder what is going on medically that you are on anticoagulation and still developing blood clots! Hang in there! Thursday, July 27, 2017 at 9:24:53 PM CDT

Roger Peters

Hi Londell. Can't read your blog because the background is so dark.  Friday, August 4, 2017 at 10:26:13 PM CDT

Wow - feel ill - Why am I alive?

Jordan and I returned from our bike trip to Golden. We had tickets for Spin Doctors and Blues Traveler at the Fourth of July event at Red Rocks. I was experiencing severe fatigue, shortness of breath, pallor, and leg pain. It took me four periods of rest to ascend the Red Rocks stairs.

Fortunately, Jordan encountered some individuals there, and I was able to depart early as I felt unwell. The cause of my condition remains unknown. Jordan and I were traveling back to Minnesota, and we departed early. It was that morning that I began experiencing memory issues and felt significantly worse. We returned home, and I resumed work on July 5.

Therefore, the header/title words were similar to those I heard this past weekend, not from a single physician but from two physicians and several nurses.

For several years, I have experienced persistent fatigue, sleep disturbances, and a multitude of other health concerns. Despite these symptoms, I refrained from seeking medical attention or consulting with a doctor. I attempted to mitigate fatigue and other issues by reducing my weekly workload to 70 hours and minimizing stress levels, while also increasing my exercise routine.

On Friday, July 5th, I reached a critical juncture where I could no longer ignore the signs of my deteriorating health. I was experiencing severe pain, and even ascending the stairs caused my muscles to ache and my heart to palpitate. Frequently, I found myself compelled to take breaks due to overwhelming exhaustion. If I had attempted to continue, I would have experienced extreme dizziness. Consequently, driven by my tendency to procrastinate, I decided to visit urgent care after work.

Upon arriving at the urgent care facility, I was subjected to a series of questions. I informed them that approximately 17 months ago, I experienced unexpected and intense pain in my right calf. I attempted to alleviate the pain through self-massage, the administration of ibuprofen, and the application of ice and heat therapy. Subsequently, a few months later, the pain manifested in my left calf. This pattern persisted until the pain was localized in my left calf, which was extremely severe. I had recently returned from a lengthy vacation. I explained that I had spent an excessive amount of time in a car on several occasions, including the initial onset of pain over a year ago. I speculated that I may be suffering from bronchitis, pneumonia, or a severe cold.

Despite my apprehensions, the urgent care facility declined to provide treatment and instead directed me to the emergency room. They even reimbursed my co-payment and indicated that the cost of the visit would remain unchanged.

I proceeded to the emergency room, where I began to recount the entire incident. According to the medical staff, I appeared rather pale. Subsequently, a series of tests was administered by doctors and nurses, which caused me to faint as numerous individuals surrounded me. The manner in which they handled the situation instilled a sense of urgency and fear within me.

After three hours, I was administered an intravenous infusion of Heparin. The attending physician, Dr. Pepper, entered the room and informed me that the following had been discovered:

• Pulmonary Embolism (significant - they used that word that said they do not recall seeing that bad - blood clots in each lung)
• Deep Vein Thrombosis – Ultrasound found several areas in the left leg and one large clot in the right.
• Anemia - A normal red blood cell in men. It’s 15g/DL; I have 6.1g/DL, and they are trying to find out why. The remaining possibility is cancer if they can’t find internal bleeding. They have sent the biopsies to U of M, and the results should be ready in the next few days.

During my hospitalization, I encountered the first individual who informed me that the majority of individuals would not survive. Consequently, I endured a series of invasive procedures over the subsequent four days, including an upper endoscopy, colonoscopy, several biopsies, and an excessive number of blood draws. Despite these extensive examinations, the underlying cause of my anemia remained elusive.

I was discharged late yesterday after expressing my preference for receiving instructions from the medical team before departing. I am currently experiencing significant fatigue, which hinders my ability to perform full-time work. To maintain confidentiality, I refrained from informing my colleagues about the medical issue throughout the day. I adhere to a regimen of two daily injections and three distinct medications until the underlying cause is identified. Until then, I must persevere and exert my utmost effort to endure. While this task presents challenges, it is preferable to the alternative.

All you quiet dreamers, carry on!

Comments from my original blog - I merged the blogs.

wildknits said...

Oh boy! (my polite version of oh shit!) You are lucky to be alive. Those types of clots can kill (speaking as someone who deals with anticoagulation[warfarin/lovenox] daily for my work).   I am glad you went in, despite the delay. And that you are now home. Please take care of yourself and let us know (if you want to) how you are doing.  Wednesday, July 19, 2017 at 9:43:00 PM CDT

SteveQ said...

That's some serious stuff to deal with! Hang in there; we're all pulling for you.  Thursday, July 20, 2017 at 10:42:00 AM CDT