Very little change

Besides health, I have been so frustrated with an issue with my new bike.  When I first purchased the bike, I hit a rough railroad crossing and bent the rear wheel slightly.  So, I had the wheel rebuilt.  Since then, I have broken my rear spoke about every 50 miles.  So far, I have broken seven spokes.  The person who built the wheel tightened the spokes as they all failed at the nub every time.  It is time not to fix it and take the wheel to someone who can build it.  When I originally asked about it from where I bought the bike, they said they could do it; they do not do it often.  Was that my first mistake?

I did get a few rides to work, which was good.  I am a little fatigued, and my legs are sore.  I find walking hard, as my ankles are also swollen.  I feel better the days I ride, and the pain is more severe when I do not ride.

So, for my health status.  The cancer testing came back negative, so there must be bleeding they are trying to find.  The upper GI found a hernia that is bleeding, but not to a level to cause the Anemia.  I do not have the results of the Capsule Endoscopy.  It has been 12 days, and surprised I have heard nothing.  I also did not see the camera pass, which I am not sure is a significant concern?

My INR dropped from 2.6 to 1.7 over a week.  We updated the dose, and the follow-up two weeks later was 2.3 last Friday.  So, that is getting closer to balance.  I know I bruised badly, so must it be working?  

My hemoglobin is 10.1, which is a slight drop.  The Doctor decided I would have Inflectra Infusion as they assume the iron capsules are destructive to the stomach.  I have experienced extreme stomach pain.

I hope to get my bike back tomorrow and get some rides in over the weekend.  I also hope the weather is good for the opening of the NDSU Bison football game and then the State Amateur Baseball event on Saturday night.  I will also spend 10-15 hours at work, as this illness has created issues with work, and we need to catch up.  I often wonder if this job is killing me.

Either way, I am alive but need clarification about the issue I am fighting.  The problems identified are: 1) Deep vein thrombosis (DVT), 2) significant Pulmonary Embolism, 3) Anemia, and 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 for me, but for my girlfriend, her daughter (and husband), and her granddaughter.  Well, maybe me, as when we met, I was 8th on my girlfriend's priority list.  Over the years, I clearly moved up to a high of 4th.  After today, I will move from 9th to 10th, understandably.  Today, the young family of three (below) becomes a family of four.

This little 2.5-year-old girl (below) will have a new baby sister. She will no longer be the center of attention and no longer have the ice cream all to herself. She will have to experience that dreaded word for any young child: sharing.

Unlike when this little girl above was born when my girlfriend had to purchase quick, costly flights 1,000 miles away, they now live close.  So, for three days, we watch this bundle of activity and joy while mom recuperates and dad prepares for the change.

I plan to practice my camera skills later today and get this family of four caught in time on a particular day.  Although, we will take it daily and hope for the best.  Having a child is challenging, and raising a child is hard.  Adding a second child to the mix adds joy and stress.  I can only pray for the best, as they are a great couple, and the older sister is one of a kind.

Carry on, my friends, 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!

Iron is important!

I have been researching the blood clots and the low iron issues.  I read an Imperial College London study that found people with low iron levels in the blood have a higher risk of dangerous blood clots.  A study of clotting risk factors in patients with an inherited blood vessel disease suggests that treating iron deficiency might be necessary for preventing potentially lethal blood clots.  That made me feel better about how I got the clots in the first place, but I realized IroIron is the primary focus for me right now.

My most recent blood draw showed hemoglobin at 10.2 and an INR of 10.3.  It is more of the iron levels that I feel so much better.  I took a bike ride two consecutive days to work (14 miles one way) and felt slightly tired after day 2.  I noticed I am much less fatigued in the rides than in the past year.

So, what have I learned?  I learned my body needs iron to make hemoglobin-rich red blood cells, which carry oxygen from your lungs to your muscles.  I knew the picture was more complicated when looking at endurance athletes.  In response to endurance training, the body adapts by increasing blood in your vessels, including iron-rich red blood cells.  As a result, the hemoglobin concentration in the blood stays roughly the same, but using up more iron, you may start dipping into your iron reserves.  That’s where the problems start.  I think that was over two years ago.

I read research by Dr. Laura Barbican at the University of Canberra (Australia), who writes, “IroIrones do much more for you than just red-blood-cell production. It also involves energy metabolism, immune function, and brain processes.”

I also learned about low levels of ferritin, a marker of how much iron the body has in its reserves, primarily stored in the bone marrow.  Garvican explains that the theory is that your body preferentially uses whatever iroIron is available to optimize hemoglobin levels, potentially shortchanging iroIron’s essential roles if the supply is limited.

However, there are several reasons that athletes, in particular, struggle to keep their iron levels up.  Endurance training stimulates the production of extra red blood cells, increasing iron demand.  “Footstrike hemolysis” in sports such as running, which involves repeated jarring foot strikes, can physically break red blood cells.  Heavy sweating and gastrointestinal bleeding also increase iron loss.  The bleeding can be minor but, over time, have a significant impact.

More recently, a study published by researchers at Florida State University in the International Journal of Sports Nutrition and Exercise Metabolism showed that hard workouts produce a spike in levels of a hormone called hepcidin that partially blocks absorption of iroIronevels of hepcidin peak three to six hours after the workout, so Dr. Garvican suggests taking iron supplements first thing in the morning on an empty stomach, or else immediately after a workout before hepcidin levels rise.

I would take more iroIron, then read that too much is as bad as too little.  I also learned that diet affects how much iron the body can absorb: Vitamin C helps with absorption, while coffee and tea may hinder it.   

I should pay more attention when I take IroIron, but it makes a difference.  However, could iron infusions be what helps?  I am unsure, although I am optimistic.  I feel better, at least for the past three days.  I have learned that low IroIron makes a great day bad quickly, and I will take this positive feeling as long as I can get it.

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

Well, my INR is finally above 2.0, so that step is now close to control.  I can't tell you much of a difference, mentally or physically.  

What I can tell is the Iron levels.  I sleep soundly and am less lethargic when the iron level is up.  As a reminder, in all of this, I was diagnosed with anemia, but no one ever explained to me the seriousness of this iron disorder.  Everyone was focusing on the blood clots in both lungs and one leg.  I was never told by a physician nor came across any educational materials alerting me to the dangers of untreated anemia – for example, the genuine chance of having a heart attack.  I look back now and realize that many of the things that I have suffered the past few years – fatigue, foggy thinking, poor memory, joint pain, headaches – can be attributed to anemia.  I have even visited a heart specialist three times, and they found little issues.

My understanding of anemia was limited.  It might cause fatigue and prevent me from donating blood.  The thing that finally clicked was my strong desire to chew ice.  I stumbled upon this information because I was curious about why I wanted to crunch ice.  It was an annoying habit to some, and I had adopted it almost full-time.  I had become practically obsessed with eating ice.  I kept an iced beverage in my hand at all times.  I even started thinking about where I could find the best 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 hooked on caffeine, and in retrospect, I now know it was the only thing that enabled me to get going in the morning and keep moving throughout the day.  I also learned that dairy products, calcium supplements, and some fibers make it hard to digest iron!  I had never heard of this, so I was completely unaware.  I only discovered it when I kicked 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 through the day.  My energy level was zero, and I felt like I was dying.  Little did I know that I actually was.

In my search, I found www.IronDisorders.org.  This is the website of the Iron Disorders Institute (IDI), and it provides some answers.  If I had read this before, I would have been to the Doctor much sooner and not the result of the near-fatal blood clots.  Yep, it was the blood clots that started my medical treatment journey.  I learned low hemoglobin alone indicates a problem, but you MUST also know your ferritin level before beginning iron supplementation.  I learned certain conditions and infections can cause your hemoglobin to drop, but iron stores could, in fact, still be very high.  Taking iron when you already have iron overload can be extremely dangerous and even fatal.

Overall, my iron level has increased from the low of 6.1 to just above nearly 10 after the most recent infusion and pill-popping the past four weeks.  

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

Carry on ...