If I Only Had A Brain…

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

Survey Says…Never Quit!

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

Take a little trip…Take a little trip…Take a little trip with me.

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

Broken But Not Bent…Uh? Wait.? (Part One)

Wow…as the cliche goes, “Time flies when you have nothing do.”  Hmm.  That one might be somewhat twisted as well.  Heather and I have been down here in sunny Flor-i-Duh for just over eight months now and as always…never a dull moment.  We’ve watched the sun melt into the Gulf of Mexico, dolphins doing dolphin things, trying out local eating establishments (seafood…yum), collecting an amazing array of shells from the beaches, considering starting a daily challenge seeing who can guess closest to the time of the daily thunderstorm, and otherwise just going about our lives.

Some things have improved…some not.  Heather has settled into her new job.  In another month or so, she should start approaching the number of job-travel miles I accrued while  working down here between 2008-2012.  I just wish she was getting hotel, flight and rental car points.  Those are nice perks.

Many of my friends and family continue to pray for Heather and I…and we are both appreciative of your kindness.  Yes, I do have a lengthy update in regards to my current medical status.  I’ve decided to simply provide a timeline of events…which makes it easy since I’m already building that list for my attorney (we’ve sued the SSA in Federal District Court…and so far we’re still losing).  We received the Federal Magistrates current opinion on July , 2019…indicating his opinion the ALJ‘s “Unfavorable Decision” should not be overturned.  So, our next step is to hopefully get our records (in person or paper) in front of an actual judge.  One of the primary arguments we maintain is the ALJ was inconsistent with the “weight” she placed upon various records, not considering the claimant as a “whole”…who’s condition (mentally and physically) is a degenerative state versus one static in nature.


  • March 20, 2018:  Today marks fifteen years since I received my lung transplant…it’s also my clinic visit at Vanderbilt for annual-studies.  My FEV1 (lung volume measured on a 0-4 liter scale was 2.62 (liters).  This value isn’t one of my better ones but it’s higher than that of many non-transplant folks walking around.
  • August 4, 2018:  Today I realized that something just isn’t right.  I’m much more short of breath than usual…and just feel a complete lack of energy.  I have a limited number of diagnostic tests I can perform at home:
    • Blood Pressure
    • Glucose Level
    • SpO2 % (aka oxygen level)
    • FEV1 (lung volume via a home microspirometer)
    • Body Temperature
    • Stethoscope (listen for crackles, obstructions, arrhythmias, etc.)
  • August 4, 2018:  Continued…  Everything is good except the FEV1 value.  You’re taught to run the test three times and use your best score.  You will get your best values in the morning before you eat.  Your evening values typically aren’t as good.  My value was 1.38 (liters).  Since my March 20 clinic visit, I have apparently lost 1.24 liters (31%) of my functional lung capacity.  Dr. Robbins (transplant pulmonologist) direct admits me.  He makes a note that Vanderbilt actually had an open bed…a VERY rare thing.
  • August 4 – 8, 2019:  Several days admitted to Vanderbilt (initially under quarantine status…visitors had to suit-up before they could enter the room).  Bronchoscopy, X-rays, Chest CT, various blood work…nothing.  Before I am discharged, blood is drawn to run an updated DSA (donor specific antibody) assay.
  • August 9, 2019:  After just arriving home last light night…Heather and I are greeted by a call from one of the nurse practitioners informing me that Dr. Robbins has reserved another suite at Vanderbilt for me.  Apparently, my DSA scores showed a Relative Ratio % around 89% if I remember correctly.  Dr. Robbins wants me to have the plasmapheresis procedure we had discussed many times before.
  • August 10 – , 2019:  Today I have a triple lumen catheter installed subclavian into my jugular vein.  Over the course of this stay, I’m hooked up to a machine similar to that used for dialysis.  The machine extracts my blood from one of the catheter’s three access points…runs it through a centrifuge…skims the plasma (and some other necessary items) off the top…warms the blood…then mixes it with some albumin and sends it back in via access point two.  This procedure was performed a total of five times extracting and replacing approximately 22 liters of plasma and other fluids.  If you’re curious, the catheter’s third access is for the drawing blood and administering medications IV.  My previous diagnosis of “DSA Positive” is now changed to “Antibody Mediated Rejection”. After the last plasma exchange, I receive an IV infusion of Rituxan (rituximab) to top off the tank.


To be continued…and yes…I do have a few good things to share in Part Two of this post.