I need an answer!

I’ve come to realize that one of the most emotionally taxing and challenging healthcare decisions many individuals will ever encounter is disclosing their health concerns to others. This becomes even more difficult when the issue is terminal. Throughout my journey through the health battle and treatment path, I’ve encountered numerous people. 

While my medical condition hasn’t improved or worsened significantly in months, I’m grappling with severe pain that is almost debilitating. It’s incredibly challenging to walk, and getting up from a chair is a struggle. However, I often feign it because I don’t want to burden or worry those around me. Despite my general health indicators improving, I don’t feel any better.

Today, during my treatment, I had another conversation with terminally ill individuals whom I’ve befriended over the past few months. They casually sat in the room, engaging in discussions about life. I sat there, allowing the medication to take effect and listening attentively.

The topic of discussion today was whether terminally ill patients (or very ill patients) should disclose their prognosis to others. What surprised me was the profound insights shared by three terminal patients. One patient expressed their decision not to inform their family because they felt powerless and wanted to spare them from unnecessary worry. Another patient revealed that their spouse was aware of the prognosis, but their children and coworkers were not. The third patient admitted to informing most people, but wished she had been more cautious.

Despite their differing perspectives, all three patients agreed that sharing grim news can be beneficial and help others prepare for their departure from Earth. However, they also acknowledged that the truth can be devastating for some individuals. It’s a delicate balance, and I struggle to find the right approach. What if the person had never been informed and faced even greater difficulties? This is a complex issue, and I don’t have all the answers.

Many of you (at least those of us over 50) followed Dear Abby? She once had a song I enjoyed about her, I like John Prine. She is the advice columnist Abigail Van Buren. Alzheimer's disease ravaged her, yet her family decided not to tell her about the diagnosis. "Dear Abby," born Pauline Phillips, died at the age of 94, and her son, Eddie, believed that she instinctively knew she was dying despite the family's silence. 

I once came across an interesting story about Allen Ball, a realtor from Columbia, South Carolina. He attempted to reassure his spirited 94-year-old mother, who was battling an aggressive brain tumor. However, she responded with a firm, “Well, I certainly don’t feel better, so you’d better prepare yourself!”

This incident made me reflect on the significance of keeping loved ones informed, even when there’s nothing they can do to assist. Is there truly any benefit to this? While sympathy may not heal, excessive worry is unnecessary when there’s nothing they can do to help. The only positive outcome is the opportunity to spend more time with a loved one before they pass away. However, if they genuinely believed they had to do that, why did they avoid spending time with them before they fell ill? Life is too busy.

Nevertheless, I firmly believe that the loved ones of a terminally ill person should be informed. This allows them to prepare for their passing by organizing their affairs. They may want to record messages for family members or seek guidance from a clergy member regarding spiritual matters, including their beliefs about what happens after death.

There’s no one-size-fits-all answer to this question. The decision to disclose or withhold information depends on the individual and the circumstances. I’m constantly amazed by terminal cancer patients, even at a young age, who openly discuss their impending death and express their emotions to their loved ones. If this approach can be adopted, it’s undoubtedly the healthiest way to proceed. However, the people I encountered today were all over 60. They appeared content to let life continue and didn’t want others to be concerned.

Today, I left treatment without any noticeable improvement and with a significant amount of mental confusion. I’m hesitant to disclose the severity of my issues to my loved ones, as I’m confident that I’ll overcome them. Today’s experience has made me question myself and wonder if I should discuss this with them. I’m uncertain about the right course of action, and I’m not sure what solution will be the most appropriate.

All you quiet dreamers, carry on!

One step up and two back?

I tried! Really, I tried. 

I failed! I really failed.

I began working out to address my health issues. I didn’t overdo it; I only went three days a week, using the elliptical or indoor cycling machine. It was challenging but refreshing, although I gradually felt more fatigued. I consulted a physician, who referred me to another doctor. This doctor then referred me back to the Ear, Nose, and Throat specialist who performed my surgery about six years ago. He examined me and revealed more information than I was prepared to learn.

I discovered that an untreated sinus infection can lead to bronchitis, worsening asthma, and chronic coughing. Oh, so that’s why I’ve been feeling unwell? He explained that persistent infection causes swelling, obstruction, and mouth breathing of the nasal membrane. Nasal congestion can also cause snoring and lead to sleep apnea. I was aware of these issues.

The acute sinusitis I neglected to treat resulted in a low-grade chronic infection. The presence of nasal polyps complicates the treatment of sinusitis.

Here’s the unfortunate part. My sinuses have been causing me immense misery. I’ve experienced pressure, pain, drainage, and difficulty breathing. I’ve also learned that this could be the reason behind my stomach pains. As my sinus pressure affected blood circulation to my eyes, I’ve been experiencing sudden, patchy, blurred vision and even blindness. My sinus infection has spread into the bloodstream, impacting the brain and eyes.

My respiratory system was already weakened due to the Pulmonary Embolisms. Excess mucus production, which is significant, drains. This excess mucus irritated my digestive system, leading to nausea and loose stools.

I understand that this is quite personal information. I know I need to take control of my situation, find the courage to move forward, and make progress. Am I a weak individual?

I need to remember my tennis philosophy. In tennis, losing a single point doesn’t mean the end of the world. It happens to even the best players. If I can consistently win a few more points than I lose, I’ll succeed. I’ll be ahead of the game with healthy eating and regular exercise if I consistently outpace my setbacks. If I expect perfection (and many of us do), I’m setting myself up for disappointment and guilt. With my medical issues, I don’t need that to develop.

All you quiet dreamers, carry on!

A long road ahead!

July 7, 2017, will forever be etched in my memory as the day I should have perished. It was a Friday, and I had returned to work after a nearly two-week absence. That day, I had to ascend the second floor, and as I reached the top, I felt a wave of dizziness and thought I might faint. 

Throughout the day, I continued to experience significant calf stiffness, a recurring issue that had persisted for 18 months and worsened over the two weeks preceding July 7. A week prior, I had almost been unable to walk due to excruciating calf pain. I had resorted to a deep massage with a massager to alleviate the discomfort. That night, I drove home feeling dizzy and unwell. I was wheezing and struggling to breathe, and I was drenched in a cold sweat on the couch.

With the worsening symptoms, I visited urgent care, but they refused to treat me. Instead, they promptly transferred me to the emergency room. As previously mentioned, upon my arrival, I was swiftly moved to the front of the line and underwent an EKG, ultrasound, and CT scan. The results revealed numerous blood clots in both my legs and lungs.

I find it perplexing that so many issues have arisen, yet I have managed to survive them. The Doctor even acknowledged that I should have perished. The medical community is perplexed by my survival despite the numerous clots in my lungs.

Due to the prolonged delay in seeking medical attention, I am concerned about the possibility of a pulmonary infarct, which would result in the death of a portion of my lung due to a lack of oxygen supply. Despite the administration of blood thinners, I continue to experience pain and may face lifelong challenges in managing my condition. In the event of an accident, I am at risk of severe complications, including internal bleeding or a brain hemorrhage. These potential risks are a constant source of anxiety for me. 

The date of July 7, 2017 (or the 8th when the gravity of the situation became apparent), will forever remain etched in my memory as the day I should have succumbed to my condition.

"Every year, more people die from preventable blood clots than from breast cancer, AIDS, and traffic accidents combined," said Dr. Samuel Goldhaber, Chairman of the Venous Disease Coalition. "It is so important to raise awareness about DVT and PE because although blood clots are common, few Americans have sufficient knowledge about blood clots and how to prevent them." The most recent statistics show that one person dies every 6 minutes in the United States from blood clots.

The Vascular Disease Foundation urges Americans to learn about the risks of venous blood clots to help prevent these deaths. DVT occurs when a blood clot forms in the deep veins, usually of the pelvis or leg. DVT can be dangerous in two ways.

First, DVT can be fatal if a blood clot dislodges from the leg veins, travels through the heart, and lodges in the lung arteries. This complication, known as pulmonary embolism (PE), results in approximately 100,000 to 180,000 deaths annually in the United States.

Secondly, blood clots can cause permanent damage to the veins, leading to long-term leg pain, heaviness, and swelling in as many as half of DVT survivors. This condition, referred to as post-thrombotic syndrome (PTS) or “chronic venous insufficiency,” can significantly impair an individual’s quality of life.

In addition to grappling with the persistent question of “why did God allow me to live,” I have experienced significant discomfort while walking. At times, it becomes exceedingly challenging to move my legs. I remain hopeful that there are no long-term complications, but my confidence is gradually diminishing. I must take each step one at a time. Furthermore, each step is becoming increasingly complex.

Fortunately, I recently had my Bionx D500 wheel rebuilt. This should alleviate my concerns during the summer riding season. Last summer, I had broken well over nine spokes, and the lacing was unreliable. Relaxing the wheel is exceptionally difficult due to the motor. Factory lacing should be stable.

I eagerly anticipate the opportunity to ride my bike to work. I felt significantly better when I could do so in August and September.

On another positive note, my son recently purchased a condo in a desirable location, Breckenridge, Colorado. This year, I plan to take two or three one-week trips to escape and relax. While I assume he would not request that I cover the expenses for these stays, I will treat them as if they were low-cost hotel accommodations, which he welcomes, as he rarely returns home from Monday through Thursday, and I am financially able to take these trips. Although it is not an inexpensive hotel, it is one of the finest in the city. The views are exceptional, biking is incredible, there are slightly inclined paths, and the town is open during the summer months.

 All you quiet dreamers, carry on!

2017, a year to forget, really!

As 2017 ends, here’s a health update. My last iron test was good, and I don’t need frequent infusions. However, stomach pain has worsened since surgery. I’ll have an upper endoscopy in a few months. Surgery may be the best option for the hernia. I’ve tried everything, including weight loss and a healthy diet. My blood thinners are inconsistent. A few weeks ago, I had severe headaches, confusion, weakness, numbness, dizziness, and off-balance, which led to a fall down the stairs. Fortunately, I only bruised a few steps and was a bit confused, but I was okay. My INR was 5.9, which was concerning, so I started twice-weekly checks to get back on track. My legs are often swollen and painful, especially my calves, which feel like they have clots. I’ve been in so much pain that I look like an older man in a nursing home. I can’t take pain medication without having stomach pain. I’m tired of the medical complexities and want to recover, but I can’t get back on track. I’ve been reading lately to understand why I’m attracted to stress and how it impacts me. An odd thing happens: I often get sick after a stressful period, like an intense deadline or holiday houseguests. When are my iron levels normal, and are my blood thinners balanced? Then I get sick. I read that the let-down effect, a phenomenon where people experience illness or flare-ups of chronic conditions after stress dissipates, is linked to increased pain and other ailments. Studies show more panic attacks on weekends and more emergency room admissions for peptic ulcers on holidays and Sundays. So, is this why I look forward to stress? I feel better? It seems odd, but there’s some validity. I have less pain when stressed. Research indicates an increase in cortisol and other stress hormones that can protect against the perception of pain, which is beneficial in the current situation as it enables me to reach safety in dangerous conditions without being hindered by pain. Conversely, a post-stress decrease in cortisol could trigger a flare-up of other forms of chronic pain, such as fibromyalgia and arthritis. A study suggests that both emotional and physical stress elicit the same inflammatory response, which can lead to illness or the “let-down effect.” After either type of stress subsides, there is a down-regulation of the immune system and suppression of the immune response as a reaction to alleviating anxiety. Additionally, the surge and fall of stress hormones can lower dopamine levels in the brain, potentially triggering overeating, which I have a significant issue with. The most effective approach to addressing this issue is to seek appropriate physical and mental stimulation intensity. For physical stimulation, I can engage in moderate exercise in short bursts, such as jogging or walking stairs for five or six minutes at a time, several times a day. For mental stimulation, I can challenge myself with math problems, crossword puzzles, computer games, or play chess under time pressure. I should perform these activities for three days after a stressful period, as this is the critical window. So, it is a new year, and you think I will get it. I am still determining. The older I get, the higher my stupidity climbs, so I will keep trying.

Carry on, my friends, carry on.

111 days

Eleven months ago, I embarked on a challenging medical journey that would test my resilience. On that day, I was hospitalized due to a severe condition known as Deep Vein Thrombosis, which resulted in multiple Pulmonary Embolisms and anemia. It is a testament to the power of medical intervention that I am still alive today.

The experience has left me with profound questions, such as “Why me?” Since my diagnosis, I have learned about two other individuals who shared similar circumstances and tragically passed away. The mystery of my survival remains unsolved, leaving me with a sense of bewilderment.

The prolonged hospital stay was not ideal, and I made every effort to expedite my discharge. On the fourth day, I requested that the medical staff find a way to transport me home, as I had planned to remain in the hospital for a limited period. They complied with my request, and since then, I have attended numerous appointments, making it difficult to keep track of the exact number. When there is a day without an appointment, I am left wondering what I missed.

To obtain a comprehensive diagnosis, several iron infusions and medical procedures have been performed. The final list of issues I am currently facing includes:

• Deep vein thrombosis – both legs
• Multiple Pulmonary Embolisms—I asked what that meant, and the Doctor said there were more than they could count.
• Eosinophilic esophagitis (Minor)
• Angioectasias—I learned that Angioectasias are aberrant blood vessels found within the gastrointestinal lumen.  They are a common source of obscure gastrointestinal bleeding and are acquired lesions compared with other vascular lesions of the gastrointestinal tract.
• Iron deficiency anemia due to chronic blood loss (definitely in the stomach and intestines)
• Drug-induced autoimmune hemolytic anemia
• Hiatal Hernia: The diaphragm is a large, dome-shaped muscle that separates your chest cavity from your abdomen.  Typically, your esophagus passes into your stomach through an opening in the diaphragm known as the hiatus.  Hiatal hernias occur when the muscle tissue surrounding this opening weakens, and the upper part of your stomach bulges up through the diaphragm into your chest cavity.  It’s not always clear why this happens, but pressure on the stomach and age-related changes in the diaphragm may contribute to the formation of a hiatal hernia. 

Since leaving the hospital, I’ve been making steady progress, but also facing setbacks. Yesterday, I underwent another procedure that involved cauterizing some bleeding areas. The doctor also noticed some new abnormal growth in my esophagus and performed biopsies. I’m eagerly awaiting the results of these tests.

One positive change is that my hemoglobin level has improved to 15.1 g/dL. This is a significant improvement, especially considering that I’ve had only one iron infusion every 16 days, with a total of eight infusions since July 7. My INR, a measure of blood clotting, has remained stable over the past month, ranging from 2.4 to 2.9. Overall, I feel better, but the doctors still advise caution. Maintaining a consistent intake of Vitamin K through my diet is a concern.

I’m both disappointed and grateful that I didn’t reach my goal of 2,000 bike miles this year. While I’ve had as many as 4,200 miles in the past and consistently exceeded 2,000, I’ll end the year with about 1,800 miles. Given the medical setback, I can accept this result, which is better than no progress at all. However, I’ve had some enjoyable rides, and I’ve included the links below for your reference.

16.94 miles in 54:29 - 18.7 MPH

17 miles in 1:01:33 - 16.6 MPH

19.65 miles in 1:19:10 - 14.9 MPH

So, I’ve reached the 111th day. According to the Doctor, I should have another 90 days before we can determine if there’s any long-term damage from the pulmonary embolisms.

Today, I’m on my way to help my son move. He’s leaving the congested tourist trap he’s called home since August 2007, Golden, Colorado. Golden has been his home base for over a decade, except for his time in Germany. He’s purchased a condo in Breckenridge, Colorado, and he’ll make that his new home base. Will he enjoy Breckenridge? It’s a lovely town that I would hate in the winter due to its overcrowding, but I love it in the summer. Will he allow me to visit him often?

Anyway, that’s the update.  I hope all is well for anyone who reads this.  I still ask, “Why me?” as I carry on—like all the quiet dreamers, I carry on

Comments from my original blog - I merged the blogs.

Annette@(running)In the Right Direction

Wow! How did you even find out you had all of that? I am just starting back to reading...wondering if you had any symptoms. Good luck with everything. Thursday, December 28, 2017 at 3:31:37 PM CST

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!