My posts take too long to read.

— Bill

I didn’t stay at a Holiday Inn Express last night. I’m not a doctor, or a chemist, or hold a degree in any of the sciences. In fact, nothing about my education would qualify me as an “expert” in any field of study in regards to my essay presented heretofore. I write this piece from the position of a man who has spent an inordinate number of years with lung issues. From this point view, I believe that I’m expertly qualified to offer testimony as to the limitations and disruption disease of the lungs places upon such souls.

Recent headlines have been highlighting the heartbreaking effects from a product, introduced and grossly successfully, marketed as a “safe alternative to smoking cigarettes.”

Vape, Vaping, Vaporizer…Electronic Cigarette.

No matter the label, the device serves the same purpose. Combine a few “natural flavors” with a “commonly used sweetener” as our base liquid. Then we “optionally” throw in some nicotine, or CBD oil, maybe THC oil, or any number of substances waiting in line for its fifteen minutes of fame.

No matter your excuse…your use of these products places you amongst some of the most gullible creatures alive and a marketing agency’s dream come true.

The operation of these devices is pretty straightforward. You take our chemical cocktail from above…shove it in the e-cigs tank (some have material to hold the mixture like a sponge does…some apparently don’t…irrelevant)…and then we hit the power switch. Almost instantly, our sweet little cocktail is “vaporized” and inhaled by millions of loyal customers.

Let us leave all of word-jargon, crafty marketing, and chemistry behind for a minute and speak of a world I know a little about. Let’s discuss that humongous white cloud whose proportions are simply phenomenal and bares a seemingly “sub-e-cig culture” competition. I’ve heard of other such size competitions involving the male genitalia. Maybe we’ll discuss that one in a later post.

As it happens, our loyal customers take the word of their “guy” down at the local vape shop as the gospel. Words like peer-reviewed scientific studies, exothermic reactions, and the like have no place in our customer’s vocabulary. Well, that’s not entirely true. You see, some of our white cloud generators have “edumakated” themselves and are now glorified chemists capable of tossing around fancy words that would make a master meth cook cower in shame.

The perfect set of human lungs can hold appropriately 4 liters of air. Mine currently provide a capacity around 1.4 liters. The average citizen could be expected to be walking around with a capacity anywhere from ~2.5 – 4.0 liters.

Our “Vapr” hits the power switch and holds on as this ride begins…driving our e-cig device closer and closer to critical mass meltdown (also know as device exploding in Vapr’s face)…on the edge of converting the heater coil to crumbling pieces of waste metal…or worse…blowing up an innocent lithium battery. All the while, Vap’r has been holding onto the imminent gargantuan storm cloud of sweetness in their lungs. The switch is off. Vap’r opens up the trap previously used as a containment system creating a cloud floating below NOAA’s weather radar systems. Smooth like…

Now let’s think about all of that vaporized goop Vapr was storing before the storm cloud. Did Vapr expel every molecule of the cloud? Did Vapr just let the cloud roll out like Cool Daddy Gag & Wheeze or did Vapr blow it out forcefully…a deep forceful breath out. Yeah, you already know the answer.

What happens to those vapor molecules sitting way down inside Vapr’s lungs? If the cocktail had been heated a little more…turning it into a gas…it would pass on through the alveoli and into the bloodstream pretty much instantly. As it wasn’t in a gaseous state, we have a heavier molecule sitting in those sacs. Another question to ponder, gas or vapor, as the vaporized product still lingering in the lungs begins to cool down, does it return to a liquid state? Additionally, when our liquid cocktail was nuked into a vapor…what exactly did Vapr’ inhale? What does the vaporized cocktail’s molecular structure look like after succumbing to the heat of the e-cig device’s nuclear core? Folks, I’ve seen some scary $h/7 from “controlled” chemistry experiments gone wrong. I’ve seen a purple cloud (…haze…) that would make Jimi Hendrix drool with envy. What I’m saying, your guy down at the vape shop has no idea what the hell he is selling and simply put…there are no “safer products” with the exception of one.

Our lungs are designed to perform one simple job…breathe air in…then exhale the waste. Kinda like plants and trees…just in reverse. (Yes…I’m taking jabs at the dirt people.)

I You’ve read this far, still curious how I might be an expert in the field of lung disease and the relationship with vaping? The lung condition currently reducing my days here on Earth is one of the same vaping creates: Bronchiolitis Obliterans Syndrome (BOS). If you’d like to learn more…Google search the term “popcorn lung”. I think you’ll find it quite enlightening.

I’d like to close by sharing some details of a real peer-reviewed scientific study I recently read. A group of participants who had never smoked or used any e-cig product were recruited as subjects for the study. Each subject was instructed to inhale a consecutive number of hits (one after the other) from their assigned & identical vaping device loaded only with ONLY the “liquid sugar” base. Upon completion of this inhalation exercise, participants began exhibiting various degrees of COPD (Chronic Obstructive Pulmonary Disease) symptoms. The effects did reverse as the inhaled product left their systems. Are you curious about what would happen if they used a “street mixture”?

There’s a headline floating about concerning a young man experiencing traumatic effects upon first use. Am I the only one seeing correlations here?

— Bill

Between old age and the exotic chemical cocktail I consume multiple times a day…it wouldn’t be improper to expect some strange side-effects. For example, No Michael Jackson references required…you hear that Frizzo?

I’ve asked several other people about their experience with this phenomenon. The responses seem to adhere to what I would describe as common themed with a majority agreement. The typical responses have been, “Yeah, that’s happened to me before.” or, “It’s perfectly normal; just part of growing older.”

Maybe it is normal. Maybe it’s not. There could be other explainations I have to consider. The one conclusion I can make and share…this experience is damn disturbing and I show it no love.

Have you faced a scenario similar to this one? Any idea what as to the underlying reasons that lead me (and others) to experience this feeling?

— Bill

Ok…the results from last Friday’s visit Tampa General Hospital (TGH) have finally trickled into their Patient Portal. I was putting together this monstrosity of a posting with tons of test data and other useless information. Sure, I’ll throw some of that stuff out for those that would like to see. However, my goal as it has always been, is to show that even in the face of a horrible prognosis that my faith is intact.

“Honesty.” It’s a concept of communication that is often difficult to put in writing for the world to see. Exposing the emotions you have locked away deep inside your mind…locked up so no on can see. How can you testify without complete honest discussion? You can’t. If you are to know me and my relationship with God, my unwavering faith, the thoughts of a man as he offers thanks for blessings, and the mesmerizingly anger..frustration..confusion…that he harbors…then honesty is absolutely necessary no matter how I will perceived once it is shared.

“Sixteen years. You’ve had sixteen years.” A stoic quote from one of the Nurse Coordinators. Delivered as a statement of fact and as a statistical anomaly. The average mortality rate for lung transplant recipients hovers around 50% at the five year mark. I can’t remember the rates for transplant recipients beyond a ten year, fifteen year…or sixteen year timeframe…if they even exist. Sixteen years is an incredible blessing. A miracle nonetheless.

The amount of physical and mental anguish I face everyday is mind boggling. At one point, I hit rock bottom. I tried to commit suicide. I feel God said, “Not yet” and pulled me back (but leaving four days of my life a complete mystery). Each day I awake…I give thanks. I consume a chemical cocktail I abhor. The entire box would be in the garbage can if not for my will to fight for every bit of life I can. I love too many people to give up (again). I’m scared to give up.

I hurt in so many ways…physically and mentally. From re-broken bones in my back, overwhelming depression, anger for all of the shit I’ve been dealt my entire life, loneliness on a daily basis, angry and scared about the path I’ve been placed on…sometimes it’s just more than I can keep hidden. Sometimes it spills over and I have only God to ask for strength to hold on to the lifeline. I’m supposed to lay my burden at the feet of Jesus. I will admit, I don’t know how to do that. God may forgive me for my sins, but I find it impossible to forgive myself for the damage I have inflicted on the ones I love. I find it impossible to shed the mess inside my mind and hand it over to my Maker.

Today, I am diagnosed with two forms of rejection of my lung transplant. The first is called Antibody Mediated Rejection (AMR). The procedure I endured in September 2018, called plasmapheresis, was supposed to rid my body of the antibodies attacking my lungs. After those five days/five cycles of plasma exchange…however possible…my test results remain the same. I left the hospital no better for the hellish experience.

“Red Herring.” Your average dictionary would describe this term as something that is intended to be distracting or misleading. That’s what I believe the AMR presents with its existence. No baseline reference exists from before or after the date of my transplant. It would be twelve years before someone would run the test to evaluate these antibody levels. Every treatment I have endured to “treat” or “remove” the antibody issue has been an act of painful futility.

“Bronchiolitis Obliterans Syndrome (BOS).” This condition describes the process of destruction of the tissue deep inside my lungs. The destruction has been active since the day I received my transplanted lungs (March 20, 2003).

“If the patient doesn’t have GERD before a lung transplant…they most likely will afterwards.” This was quoted by one of the authors of a study presenting GERD as a process responsible for bronchiolitis obliterans syndrome. In effect, for sixteen years, as I’ve slept every night…stomach acid and any other stomach contents have found there way back up my esophagus and into my lungs (also know as aspiration).

For fifteen of my sixteen years with my transplanted lungs, I issued complaint after complaint to the transplant team at Vanderbilt. I explained my slow emptying stomach, my slow emptying intestines, constant naseua and vomiting. For fifteen years not a damn thing was done to address the issue. There was no lack of peer-reviewed data to draw information and reparative plans. The quote I offered comes from a 2002 study. “Not our department.” I think that would sum up the experience.

Am I irritated? Most assuredly. More than once time (twice and possibly more) my own research surpassed that of my doctors’. Yet, because I have no MD behind my last name, I receive “patient has been on the internet and believes he has aseptic meningitis due to treatment with IVIg.” Who knows what’s going on inside your body? Maybe the one occupying it? If I have presented that event before…let me know…my memory isn’t what it used to be. Age and toxic medications are inducing memory loss.

So, let me “try” to summarize all this. A while back, my thyroid gland developed issues (hypothyroidism) and my weight went from 198 lbs. to 230 lbs. in about thirty days. I’ve had a study where a probe with a pH sensor was placed in my esophagus to measure the pH level as I slept. The resultant value was a 3.9pH (hydrochloric acid…aka stomach acid). Thus proving my stomach contents are leeching backwards as I sleep. The diagnosis of BOS was added to the already lengthy list.

On a positive note, current studies across several transplant centers have shown treatment with Advair, Singulair, and Azithromycin can help stagnate and possibly improve BOS damage. It’s necessary to let you know that by traditional definition, BOS damage is permanent. I’m on this triple drug regimen…and I’m praying for improvement (as in my lung capacity begins to increase or at least stops decreasing). However, for this treatment to have a chance to work, the acid reflux problem has to be resolved..

I’m packing around a 30 lb. spare tire. This extra weight is affecting me in two specific ways. One, I could expect less pain in my back if I can shed this extra weight. Second, losing the weight creates a better surgical environment and shorter recovery period. The standard treatment to stop the acid reflux is a procedure called a Nissen fundoplication. My wife had this surgery for the very same reason…stop the continued backwards flow of stomach acid. The surgery is typically done laparoscopically. Part of the stomach is wrapped around the lower esophageal sphincter creating a one way path. With my large abdomen in the way…that makes for a difficult procedure…and possibly require opening my abdomen (infection risk and recovery period both escalate).

I’m doing everything I can “on my own” to get this weight down. Hypothyroidism hinders your efforts tremendously. I’m seeking the help of a thyroid/endocrinology group for any “catalyst” they can provide to dump this extra girth.

“Sixteen years”. The longer it takes to get all the ducks in a row…the more likely I’ll see a snowballing effect where things get really ugly…really fast.

“Honesty.” I’m scared. I’m mad. No…I’m pissed. I go fifteen years with minor issues and then fall off the cliff. How and why?

“Confession.” If my ducks decide to fly on further South to winter…keep the following in mind. This journey began on a beach up the coast near Perdido Key, FL in July 1996. This journey will eventually end and it will be here on the beach in Venice, FL. I’ve always loved the tranquility and permanence of the oceans. At any time, you can sit…close your eyes…and be taken away to a place where all the worries of the world cease to exist. Until then, I continue to ask for your prayers for mental strength and physical healing.

— Bill

So, last couple days I’ve found myself with a heartbeat over 140 bpm with SpO2 dipping as low as 88% while trying to make the bed. Called the Lung Transplant Coordinator at TGH yesterday with my report. She asked for me to come up to Tampa General so they could get a chest X-Ray, blood work, and gargle test that allows a quick screening for the presence of any bacteria and/or viruses. Also gave them some of my “Super Sticky Green Lung Glue” (aka sputum sample). Every test has come negative so far…that I am truly happy to hear. Good news. Always appreciated.

The green lung glue will take a couple days to determine if it loads their Petri dishes with anything of consequence.

My quarterly visit to Tampa was already on the calendar for next Thursday. For now however, sticking to the current plans. The primary issues of concern being establishing with a thyroid/endocrinology group in Sarasota (to help me lose about 25-30 pounds I gained when my thyroid gland left the building. The next move after getting rid of this extra weight is having one of two possible surgical procedures to halt the acid reflux (GERD) problem that continues to destroy my lungs.

Simple enough…right? I think so. It’s especially cool when the nurse asks if you’ve been exercising and you answer, “Yes…I was doing aquatic exercising when I lost my footing and re-broke one of my vertebrae (L2 is squishing the disc between it and L3).” I think that’s the fastest I’ve ever been able to get a medical professional off my butt about exercising. You have to love the look on the face as well.

Trying to keep this one short and sweet. — Bill