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