Is there an answer?

I concluded one of the most emotional and difficult healthcare decisions many people will ever face is telling someone of their health issues.  This is worse if the problem is terminal?  I have met many people along the health battle and treatment path.  While I have not improved or declined in months, medically, I am struggling significantly with significant pain.  It is almost debilitating, and it is tough to walk.  It is even difficult to get up from a chair.  However, I often fake it, as I do not want sympathy or worry from those around me.  My general numbers have improved, yet I do not feel better.  

Today, during my treatment, I again spoke with terminally ill people I have formed friendships with over the past few months.   They casually sat in the room and talked about life.  I sat and let the medicine flow and listened.

The discussion today was whether terminally ill patients (or very ill patients) should share the prognosis with others?  What caught me off guard was that three terminal patients made statements that made me think about this more intensely.  One said they did not tell the family as they could do nothing and wanted to save them non-productive worry.  Another said their spouse knows, but kids and co-workers do not.  The third said she informed most people and wishes she was less open.  They all agree grim news can be beneficial and help others prepare for their departure from Earth, yet for some, the truth can be devastating.  Yet, it can work both ways.  What if the person was never told and has more incredible difficulty?  Such a balance, and I do not know how to stay on the rope.

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.  She was ravaged by Alzheimer's disease, 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 read about Allen Ball, a realtor from Colombia, South Carolina, who tried to convince his feisty 94-year-old mom, who had an aggressive brain tumor, that she was getting better, replied: "Well, I certainly don't feel better, so you'd better prepare yourself!"

It made me think about how important it is to keep others informed when there is nothing they can do to help.  Is there really a benefit?  Sympathy does not heal, nor do they need excessive worry when there is nothing they can do to help.  The only benefit is to spend more time before a loved one passes, but if they really thought they had to do that, then why did they avoid spending time before they were ill.  Life is busy, that is why.

Yet, I believe the loved ones of a terminally ill person need to know.  This allows preparation for their passing by getting their affairs in order.  They may want to record messages to family members or talk with a clergy member about spiritual matters, including what happens to them.

There is no correct answer.  What you say or don't say depends on the individual and the situation.  I never cease to marvel at terminal cancer patients who, even at a young age, talk frankly about dying and express their feelings to loved ones.  If this can be accomplished, it's the healthiest way to go.  Yet the people I met today were all over 60.  They seemed content to let life continue and did not want others to be concerned.

So today, I left treatment without a bit of improvement and a great deal of mental confusion.  I am not disclosing the severity of the issues to loved ones, as I am confident I will conquer the problems.  Today made me doubt myself and ask, what if I do not beat it?  Should I discuss this with them?  I just do not know and am not sure whatever I do will be the right solution.

Carry on, my friends, carry on.

Trying, One step up and two back?

I tried!  Really, I tried.

I failed!  I really failed.

I started working out to help improve my health issues.  It was not excessive, just three days a week with elliptical or indoor cycling.  It was challenging but refreshing, although I felt increasingly fatigued.  I went to the physician, who sent me to another physician, who sent me back to the Ear, Nose, and Throat specialist who performed my surgery about six years ago.  He evaluated me, and I learned more than I wanted to know.

What I learned was an untreated sinus infection can lead to bronchitis, worsening of asthma, and chronic cough.  Oh, so that’s why I feel bad?  He explained that continued contamination leads to nasal membrane swelling, obstruction, and mouth breathing.  Nasal congestion can cause snoring and lead to sleep apnea as well.  OK, I know that is happening.

The acute sinusitis I failed to treat created a low-grade chronic infection.  The presence of nasal polyps makes treatment of sinusitis difficult.

Here is the real bummer.  My sinuses have made me miserable.  Pressure, pain, drainage, and difficulty breathing have been issues.  I now learned that this is also a possible issue with my stomach pains.  As my sinus pressure impacted blood circulation to my eyes, I have sudden, patchy, blurred vision and blindness.  My sinus infection has spread into the bloodstream, affecting the brain and eyes.

My respiratory system was already weakened from the Pulmonary Embolisms.  As excess mucus is produced, and there’s a lot of it, it drains.  This excess mucous irritated my digestive system.  Nausea and loose stools follow.

I know, it’s TMI.  I know I need to grab hold of my bootstraps, find courage, and make progress.  Am I a mouse of a man?

I need to recall my tennis wisdom.  In tennis, losing one point isn’t the end of the world.  It happens to the best of us.  If I can consistently win a few more points that I lose, I will succeed.  I will be ahead of the game with healthy eating and exercising if I consistently out-stepped my steps back.  If I expect perfection (and many of us do), I am setting myself up for disappointment and guilt.  With the medical issues, I do not need that to develop.

Carry on, my friends, carry on!

Why am I alive with a long road ahead!

I will never forget July 7, 2017, like it was yesterday.  It was the day I should have died.  It was a Friday.  I went to work early after being out of the office for nearly two weeks.  I had to go to the second floor that day, I climbed the flight of stairs, and when I reached the top, I thought, "I think I'm going to faint." I continued having issues throughout the day.  I had significant stiffness in my calf 18 months before and occasionally since.  The two weeks before July 7, I complained of stiffness in my calf.  One week before, I was almost unable to walk because of the extreme calf pain.  I did some deep massage with the massager.  I drove home that night and complained I was dizzy and felt terrible.  I was wheezing and had great trouble breathing.  I was in a cold sweat on the couch.

I went to urgent care, where they refused to treat me.  Instead, I was whisked to the ER.  As previously reported, as soon as I arrived, I was pushed to the front of the line and got an EKG, ultrasound, and a CT that showed I had numerous blood clots in my legs and lungs.

I think "it won't happen to me" for so many issues than it happened to me.  It should have killed me.  The Doctor even said it should have killed me.  Doctors are puzzled as to how I survived with that many clots in my lungs.

Because I waited so long, I may have a pulmonary infarct (a portion of my lung is dead because it lost too much oxygen).  I still experience pain and may struggle for the rest of my life, managing with blood thinners.  If I get in an accident, I could bleed out, or if I get hit in the head, I could have a brain bleed.  These are all the things I worry about daily.  July 7, 2017 (or the 8th when reality set in) will always be hard for me.  I will never forget it as the day I should have died. 

"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 1 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 breaks free from the leg veins, travels through the heart, and lodges in the lung arteries.  This complication, called pulmonary embolism (PE), causes between 100,000 and 180,000 deaths per year in the United States.

Second, because blood clots can permanently damage the veins, as many as half of DVT survivors can experience long-term leg pain, heaviness, and swelling that can progress to difficulty in walking, changes in skin color, and open leg sores (known as ulcers).  This condition, called post-thrombotic syndrome (PTS) or "chronic venous insufficiency," can significantly impair quality of life.

So, besides living with the constant thought of "why did God let me live," I have had significant pain in walking.  It is so hard, at times, to move the legs.  I am holding out hope there are no long-term issues, yet getting less and less confident.  I can only take this one step at a time.  Moreover, each step is getting more challenging, so it seems!

Some good news is that I got my Bionx D500 wheel rebuilt.  That should significantly decrease my concerns over the summer riding season.  I had broken well over nine spokes last summer, and the lacing was unreliable.  Relaxing the wheel is exceptionally hard due to the motor.  Factory lacing should be stable.

I am looking forward to getting on the bike and biking to work.  I felt better When I could do that in August and September.

On another good note, my son recently purchased a condo in a great location - Breckenridge, CO. This year, I will take two or three one-week trips to get away and try to relax.  While I assume he would not ask me to pay for the stays, I will spend like it is a low-cost hotel, which he welcomes as he is rarely home Monday through Thursday, and I can afford to get away.  It is far from an inexpensive hotel, but it is one of the best in the city!  The views are great, biking is incredible, there are slightly sloped paths, and the town is open during the summer.

Until next time,  Carryon, my friends, carry on.

2017, a year to forget, really!

First, as 2017 comes to a close, here is a health update. My last iron test was favorable, and I am not getting frequent infusions. Stomach pain has increased dramatically since the surgery. I will have a follow-up upper endoscopy in a few months. At this time, the best option for the hernia may be surgery. I could lose weight. I try everything possible and eat well. More on that possible reason later.

My blood thinners are all over the map. A few weeks ago, I had a severe headache for a few days; I had significant confusion, weakness, and numbness. I was dizzy and off-balance,  which resulted in a fall down the stairs. Fortunately, only a few steps, so I was bruised and confused, yet OK. When I went to the Doctor to check the issues, I had an INR of 5.9. That was not good. So, I started twice weekly checks to get back on track. Time will tell.

Finally, my legs hurt and are very swollen most of the time. My calves often feel like they have clots with centralized pain. I am looking for answers where no answer seems to be found. I have been in so much pain, and I look like the older man at the nursing home walking. I can’t take anything for the pain without having more significant stomach pain. Just getting tired of all these medical complexities and want to recover, but I can’t get back on the right path.

I have been reading so much lately, trying to figure out why I am attracted to stress and how it impacts me significantly. An odd situation is actually happening.

I often wonder how I manage to get through a particularly stressful period – an intense deadline at work or a spate of holiday houseguests – only to get sick after the stress has lifted? When are my iron levels back to normal, and are my blood thinners balanced? Then I get sick.

I read it’s not a fluke. It’s a phenomenon often referred to as “the let-down effect,” a pattern in which people come down with an illness or develop flare-ups of a chronic condition not during a concentrated period of stress but after it dissipates. Research has linked the let-down of perceived stress with an increase in flare-ups of pain and other ailments. I read a study that found people experience more panic attacks on the weekends, and a 2015 study from Taiwan found that holidays and Sundays have more emergency room admissions for peptic ulcers than weekdays do.

So, is this why I look forward to the stress? I feel better? It seems odd, yet it appears there is some validity. I have so much less pain when I am in a high-stress situation.

I read there is a rise in cortisol and other stress hormones that can protect me against the perception of pain, which is helpful at the moment because it can help me reach safety in a dangerous situation without being hindered by pain. Similarly, a post-stress drop in cortisol could trigger a flare-up of other forms of chronic pain, such as fibromyalgia and arthritis.

I read a study that stated emotional and physical stress kick up the same inflammatory response, which opens the door to illness or the let-down effect. After either type of stress dies down, there’s a down-regulation of the immune system and suppression of the immune response [as a reaction] to easing anxiety. Besides, the surge-and-fall of stress hormones could knock down dopamine levels in the brain, which can trigger overeating, which I have a massive issue with!

The best way to address the issue is to seek the proper physical and mental stimulation intensity. For physical stimulation, I can do moderate exercise in quick bursts – such as jogging or walking stairs for five or six minutes at a time, several times a day – can help. For mental stimulation, I can do challenging math problems, crossword puzzles or computer games, or play chess under time pressure. I read I should do these activities for three days after a stressful period as that’s 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

That was when my 2017 medical roller coaster ride started!  It was 111 days ago I was hospitalized with Deep Vein Thrombosis, multiple Pulmonary Embolisms, and anemia.  I have said it before, but when a Doctor looks you in the eye and says, “You’re lucky to be alive,” it means something different than what is stated in the movies.  Still, have those words running through my mind.  However, it causes some odd questions like “Why me?” Since I was diagnosed, I have read about two others I knew who died from the same issue.  Why was I saved?  I will never know the answer, and it puzzles me!

That multiple hospital day stays were more than I wanted, and I tried to escape.  In fact, on the 4th day, I told them to find a way to get me home, as I was planning to stay only a little longer.  They did, and since I have had so many appointments, I lose count, and when there is a day without something, I wonder what I missed.  Since then, several iron infusions and medical procedures have provided the complete diagnosis.  The final list of issues:

• Deep vein thrombosis – both legs

• Multiple Pulmonary Embolisms—I asked what that meant, and the Doctor said it was 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.  Usually, your esophagus passes into your stomach through an opening in the diaphragm called 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 a stomach and age-related changes in your diaphragm may contribute to the formation of a hiatal hernia. 

16.94 miles in 54:29 - 18.7 MPH

Since leaving the hospital, I have regularly taken two steps forward and one step back.  Yesterday, I had another procedure, which included the cauterization of some bleeding areas.  The Doctor also saw some new abnormal growths in the esophagus and took biopsies.  I will wait in anticipation of good results.  

One significant change with the iron infusions is my hemoglobin is 15.1.  That is super, although I have had one infusion every 16 days, with eight since July 7.  My INR has been stable, with readings from 2.4 to 2.9 over the past month or more.  Overall, I feel better, but they still say to use caution.  Diet is a concern to ensure my Vitamin K intake is consistent. 

I am disappointed or grateful that I did not reach 2,000 bike miles this year.  In the past, I have had as much as 4,200 miles yet consistently above 2,000.  I will end the year with about 1,800 miles.  Given the medical setback, I can live with a lower result, which is better than no result.  Although I have had some good rides, the links are below.

17 miles in 1:01:33 - 16.6 MPH
19.65 miles in 1:19:10 - 14.9 MPH

So I come to the 111th day.  According to the Doctor, I should have another 90 days before we know if there is any long-term damage from the pulmonary embolisms.  

So today, I am on my way to help my son move.  He is leaving the congested tourist trap he has called home since August 2007, Golden, Colorado.  Golden has been his home base for over ten years, except for his time in Germany.  He has purchased a condo in Breckenridge, CO.  He will make that his home base.  Will he enjoy Breckenridge?  It is a lovely town that I would hate in the winter, being so crowded, but I love it in the summer.  Will he let me visit 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!

What if I don't wake up tomorrow?

Ever wonder, “What if I do not wake up tomorrow”?  Does that thought ever run through your mind?  Of course, with the crazy President, some fools have elected, that may be the thought of more people than we think!

With my most recent health setback, I have this thought every night as I go to bed.  I am taking each day as a new day.  Although I am also getting things in order.  I might be a selfish or weird human being cause I am not worried about how others will carry on if I do not wake up.  Most carry on fine now without my presence on earth; I am there when they need a strong arm or a shoulder to lean on for emotional or physical support.  

Missing humans are a part of life, be it a wife or husband leaving, a child all grown up, or a friend you once cherished who now hates you.  That is part of life we have all experienced, and life continues just fine.  My effort is to sort through things I should have thrown away years ago, get all my financial documents so there will be little or no estate issues, and each day I leave work with precise information on what I have completed and the next step required so that any project can proceed with ease.  If I do not wake up, I want there to be no burden on those who are still on this planet.

While there is no clear indication that I will not wake up, many things are wrong that create conflicts.  Deep vein thrombosis and pulmonary embolism always have risks.  Pulmonary embolism can also lead to pulmonary hypertension, a condition in which the blood pressure in the lungs and on the right side of the heart is too high.  With the many obstructions in the arteries inside my lungs, my heart must work harder to push blood through my vessels.  This increases the blood pressure within these vessels and the right side of the heart, which can weaken my heart.  I do go to the clinic twice a week for blood draws and monitoring, and for the first time in my life, my blood pressure is consistently 10 to 15 percent higher than at any time in the past ten years.

I am seeing the heart specialist again next week as I have experienced pain in the chest at least every other day that is new, and I can’t explain.  They will also do another CATSCAN, and there is a chance they may consider clot removal surgery.  There was a concern about my new clot that came a few weeks after the hospital and warfarin treatment.  This may be more important if the heart specialist finds new issues.

In addition, on Thursday, I will have the Capsule Endoscopy to try and find the bleeding that they suspect is causing the anemia.  While that is a simple process, I cringe at the thought of a 360-degree camera with a light passing through my system.  Sometimes, it does not pass, which is an issue.  I am hoping I see the camera pass, and I will not have that to worry about,

Anyway, life is odd, and going to sleep is more challenging when you wonder if you will wake up in the morning.  I am sure I will wake up, and all will be fine; I am just sick of all the unknowns.

I did get out to take some pictures yesterday.  Here is my favorite.

Carry on, my friends, carry on!

15 days - minor progress

So, it has been two weeks since I was released from the hospital.  When I left the hospital, I had 6.1 g/DL hemoglobin, where 15 g/ML was desired.  When I was admitted, my INR was 1.12.  After 15 days of Lovenox injections and 10 mg of Warfarin, I am at 1.8 g/ML.  Still below the 2.0 to 3.0 they desire.  So, I continue taking the medicine, hoping the numbers will increase.  I am still exhausted and not sleeping well.  I did sleep well for three days after the iron infusion, but since then, I have had abysmal sleep and fatigue.  It is hard to push onward, but what choice do I have?

I see the pathologist next week and hope to get this sorted out.  This issue, the stress from work, and concern over family members take a toll.  I am battling people I cherish, making bad choices based on other people's actions.  Most people agree reacting to some people's actions is not suitable for them.  An analogy would be if my son told me to take the medicine I need to get better, and I just refused because I want to feel better without medicine.  He would be pissed if I did something irrational and stupid like that jeopardized my health and future.  Yet people do similar actions, and they think I need to stay out of their business.  I have always said you can't control or regulate stupidity.

In one situation, a relationship went terrible where the two people were together for 16 months.  The one party wants to throw away much of their lifetime goals and objectives to try to get the relationship back, even when it is clear it is not healthy to do so, and the relationship is toxic.  No logical person would think this is a good thing, but when people get stupid, there is not much you can do to protect them.  It reminds me of the twisted thoughts of those who think their president is the most honest and fair person in the world.  Even though facts say otherwise.  But this causes stress for those who care.

The positive side effect of this illness is that I have lost 25 pounds. Of course, I could still lose 75 more pounds, but other priorities exist. I should do what the doctors and all those I discuss the issues with suggest I do, not some other action caused by out-of-control emotions. If I could get others to see that logic, life would be better for all involved.

Carry on, my friends, carry on….

Most would not be alive...

The header/title words were similar to those I heard this past weekend—not from one physician but two physicians and several nurses.

For years, I have been feeling fatigued, having trouble sleeping, and having many other health issues. Yet I delayed any hospital or Doctor check-ups. I reduced the fatigue and other issues to 70 hours per week and high stress with less exercise.

Last Friday, I reached a point where I could no longer ignore the signs. I was in significant pain, and walking upstairs made my muscles sting and my heart race. Often, I had to take a break with little activity as I was totally out of breath. If I tried to continue, extreme dizziness resulted. Therefore, being the procrastinating male, I decided to stop by urgent care after work.

I checked into urgent care, and they asked me a few questions. I responded that about 17 months ago, I had an extreme pain in my right calf that was unexpected. I massaged, took Advil, and used the Ice Heat technique, which was better. Then, a few months later, it was the other leg. This pattern kept going to the point now that the pain was in the left calf, and it was very intense. I had just returned from a long vacation and explained I had spent a great deal of time in a car on several occasions, including the first pain I had over a year ago. I thought I might have bronchitis, pneumonia, or a bad cold. They refused to treat me and ordered me to the Emergency Room. They even refunded my co-pay and stated there would be no change for the visit.

Off I go to the emergency room. I started telling them the whole story; according to them, I was rather pale. Then, all hell seemed to break loose. I was surrounded by several people and was in a barrage of tests from Doctors and Nurses. The way they acted, I thought I would die, and they needed to act fast.

After three hours, they had me on an IV of Heparin. The Doctor came in and said they found the following:

• 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. 

This is when I heard the first person say most people would not be alive. I spent the next four days being prodded and poked in more ways than possible. Upper Endoscopy, Colonoscopy, a few biopsies, and more vials of blood than I ever imagined. Still, no answer for the anemia.

I was released late yesterday, yet I am very fatigued and unwilling to work full days. I take two shots a day and take three different pills until they identify the issue. Until then, I must stay strong and do my best to survive. That is hard to accomplish, yet it is better than the alternative.

Carry on, my friends, carry on...