Category: Lung Transplant

Medical Update -Troubleshooting

~ William Turner ~ Leave a comment

SUMMARY: For quite a while (as in several years), I’ve been experiencing some rather intense fatigue and weakness much like flu symptoms. This article outlines the efforts to isolate the culprit.

 

[ MEDICAL MYSTERY MACHINE ] -ONLY ME: On October 3rd, several blood tests were conducted to assess several routine functions of my body. These include common items such as Hemoglobin A1C (diabetes index), Complete Metabolic Panel (CMP), Complete Blood Count (CBC), Thyroid, Testosterone, PSA (screening for signs of prostate cancer), Tacrolimus (one of my primary transplant medications), and a few other items.

As the results began to show up, I jokingly wondered if my blood had been mixed up with someone else’s. The amount of “green” colors attached to the results was welcomed but not expected. My kidney and liver functions are great. My A1C is below the maximum level for a diagnosed diabetic patient. My thyroid and testosterone levels are within normal limits. With the exception of my cholesterol levels (not lifestyle issues), even those levels were unimpressive as sources of concern.

My Tacrolimus level was below the normal therapeutic range. However, my dosage has been adjusted and will be checked again in a few weeks. 

So, we come to the search for why I have been experiencing the fatigue and systemic inflammation issues. As my immune system is almost nonexistent, I’m susceptible to what are called “opportunistic infections”. Over 90% of the population are carriers of two viruses that can be associated with the fatigue symptoms. These are Cytomegalovirus (CMV) and Epstein-Barr Virus (EBV). As an active CMV infection could be lethal, I’m regularly screened for this virus. Both tests returned negative indications for active infections. Tests for vitamin B and vitamin D deficiency were also negative. My thyroid and testosterone levels are within normal levels. Essentially, without going deeper into the more obscure possibilities, nothing in the normal realm is poking its head up say, “Hey, it’s me!”, giving you a hard time. 

Before my December follow-up visit with my primary care physician (PCP), I will have more labs to delve into the more obscure possibilities. However, due to the incredible number of medications and diagnoses, isolation of a candidate is also an incredibly challenging task. That is until I entered my “Thought Tank”, otherwise known as the shower. And there, the day after my visit with my PCP, what should have been an obvious answer long ago made itself known once again. 

Years ago, the team at Vanderbilt started me on a drug called “Pravastatin”. It is used to help improve your cholesterol levels. Upon starting the medication, I experienced an immediate reaction…muscle weakness and fatigue. The reaction was documented and my tolerated dose reduced to 10mg daily. 

Several years later and a new transplant center (Tampa General Hospital), I was again prescribed Pravastatin for cholesterol control at a dosage of 40mg daily. Yeah, that’s four times the dosage I could tolerate without becoming symptomatic. The history with this medication had become a faded memory by this time. Now, nearly six years later…as I search in vain for the cause of my extreme fatigue issues…I finally remembered why that drug has never been my friend. 

After consulting with my PCP and sharing my previous experiences with this meditation, I have discontinued taking it for about three to four weeks. This will give my body (and liver) enough time for complete clearance. If my symptoms begin to dissipate, then I’ve established the first part of a proven cause of my symptoms. To completely eliminate the drug and its association with the fatigue symptoms, I will have to take the medication for a short period to see if the symptoms return. As many factors are constantly in play, this is the best way of identifying or isolating the culprit from the incredible number of possibilities.

As I approach the end of the first week without the Pravastatin, I continue praying the symptoms decline and that I have finally found a simple solution to a truly shitty situation.

My friends in the medical community are already aware of this common problem associated with “statins” or cholesterol drugs. I’m incapable of explaining why I’m just now remembering the history and reaction to this drug. Maybe the sheer number of medications in my personal pharmacy blinded my comprehension. Time, age, memory recall and mental stress are also contributing factors to consider amongst the possibilities. 

For reasons requiring an article of exploration of its own, the state of my mind and mental health have been and continue along a path of diminishing capacity. The contributing factors exist primarily beyond my control creating a dangerous self-fueling mechanism of decline. 

Medical Update – Routine Maintenance

~ William Turner ~ Leave a comment


[ SUMMARY ] -MEDICAL UPDATE: Yesterday, my first stop was Quest to donate blood (eleven vials) and then onto visit with my pulmonologist.

 

[ LABS ] -ROUTINE: The blood tests are mostly routine requests from my Primary Care Physician (PCP) and Pulmonologist (lungs). The exceptions being a few tests searching for potential candidates for excessive fatigue. Results will be available in a few days. For those interested, I’m creating a log (trending data) of several items within the Medical page on this website.

[ PULMONOLOGIST ] -ROUTINE VISIT:  As I’m no longer followed by a Lung Transplant Center, I’m seen by an excellent local pulmonologist. I’ve been blessed to have an amazing PCP and Pulmonologist. Both are excellent physicians and people. My PCP “gave” me his cellphone number and asked me to text any questions or requests. My pulmonologist, a physician who listens and does everything possible to reduce the costs of medications and equipment. He walks every patient to check-out and verbally gives the front desk staff instructions.

Pulmonary Function Tests (PFTs) provide an indication of lung volume that can be tracked over time. Deviations provide the first signs of changes (good or bad) and offer indications for additional actions. The primary index derived from PFTs, FEV1 (Forced Expiratory Volume), calculates the amount of air a person can force out of their lungs in one (1) second.  My last FEV1 was 1.34 (0.0 to 4.0 liter scale). Yesterday’s FEV1 was 1.69 (a 26% increase).

However, an unknown factor exists between the two values. The previous value was from my spirometer (device used to measure lung volume) while the second was from my physician’s spirometer. Determining comparative results between the two devices (deviations vs. accuracy) requires testing my spirometer today (timely comparison). Either way, I’m quite pleased to see any improvement even if infinitesimal.

Regarding additional pulmonary tests, two weeks from now I will be picking up a “ring” that connects to my iPhone (via Bluetooth). This device is used to perform an overnight “Sleep Study” at home to record sleep apnea events (how often I quit breathing) and measure respiratory rates and oxygen levels. The collected data will provide evidence determining a need for supplemental oxygen while sleeping. Additionally, as my CPAP machine is both ancient and factory recalled, the data should justify the necessity for a new device.

[ IMAGING-SCANS ] -BONE DENSITY: The only remaining medically relevant item to complete is a DEXA or bone density scan. Included amongst all my “medical issues” is osteoporosis or brittle bones. This exists as a side-effect of current and pre-transplant medications. Interestingly enough, the medication I’m taking to help prevent kidney stones appears to be slowly increasing my bone density. The medication reabsorbs calcium versus allowing it to hang out in my kidneys creating spiked rocks.

The Open Book Testimonials

~ William Turner ~ Leave a comment

[ PRAYERS ] -FATHERS: This post reaches deep into my heart and soul and opens the book to my inability “as a father” to help those I love the most.

Most of this article comes from an ongoing conversation with a trusted friend and fellow Christian brother. His name will not be disclosed. However, he remains one of the few “fathers” deserving of the title.

[ BROTHER ] -TRUST: ____, I’ve come to you before looking for guidance. I see in you a faithful father, husband, son of God, and follower of Jesus Christ our Savior. I ask for your thoughts on what follows.

[ STRUGGLES ] -FAITH: My daily prayer remains, “Thank You for another day; thank You for my wife, my children, my friends, all those I love; thank You for all blessings I’ve received but don’t deserve; please watch over and protect all those I love; Amen.”

It’s my hope you understand, my prayers are most often for those I love, not myself. Heather constantly prays for “me,” and I’m eternally grateful. Praying for myself remains a difficult task.

I’m not sure it’s easy for anyone to understand how I could live a “cup full” existence. If I am succeeding, it is through absolute humility, faith, and the Grace of God. If not for being humbled years ago, I question if my faith would exist today.

I won’t deny I stumble often, yet I try to maintain my life as above, “thankful for what I have, not what I want.”

    • I’m not a saint.
    • I admit to feeling my prayers go unheard.
    • I have to confess that I question the authenticity of my faith.
    • I question my faith because I can’t move a mountain.
    • I question my faith because I can’t move a grain of sand.
    • I question if my faith is worthy of being “that of a mustard seed.”
    • I’m not impervious to pain. I live in multiple states of pain.
      • Physically.
      • Psychologically.
      • Spiritually
    • Yet, pain defines me and maintains me, but in ways not expected.
    • My faith in God, Jesus Christ, and the Holy Spirit exists and endures by pain. 

[ BURDENS ] -THE EASY YOKE: God has and continues to bless me richly. He does so of His own accord and through prayers. As many Christians or anyone might expect, my prayers are answered “Yes.” they are answered “No.” and remain “Unanswered.” I suspect I’m not alone.

Of my own burdens? I’ve never comprehended how to “lay my burdens at the feet of Jesus.”  I have never been able to “Let Go, Let God.”

How do I pray for “myself” and not feel greed or selfishness?

How do I pray for what I feel I “need” or worse “want” now while understanding both God’s plan and timing lacks any resemblence to our own? 

Through the eyes of God, do I “deserve” anything? Does my “I need” deserve fulfillment or even acknowlegement? No, they don’t. I’m all too familiar with God’s plans and timing, that the path I want to travel is not the one God (my Father) wishes for his child. A wise pastor once said, “God is not Santa Claus.” 

But those prayers, granted or not, will never overshadown the greatest blessing God has bestowed upon me. I’m still here, with my wife, my family, my friends, and all those I love. There are no words with sufficient power to describe it…I can’t even give “it” a name. 

[ PRAYERS ] -TO A FATHER FROM A FATHER: So, here is the one thing I pray for, that I “need.” The one thing I desire more than anything else in this world (as we’re not home yet). And it is indeed for “me”. And it elicits feelings of greed, guilt, and selfishness.  Yet, it originates from a father’s instincts and the protection he seeks to provide his family…his children.

What I pray for, or more correctly, who I pray for, are all my children (those alive now and yet to come). 

[ LOVE ] -SACRAFICE: Is it wrong to ask God to heal my daughter (and all of my children)? In doing so, lay all their pain and suffering upon me? To end a family curse with “me”. Never let another person know the pain of a genetic mutation that’s followed my family for generations.

I watch as my daughter, Lauren,  plants her feet in every footstep I left behind. I stand watching powerless as she succumbs to the same mutant genetic processes. I watch as a “father” lacking the ability to protect his family.

For nearly thirty years, I have prayed to be the last person to bear this curse.

At this moment, the answer to my prayers would appear to be “No”. However, incredibly more cruel on the surface, the answer isn’t a simple “No”. Both of my (adult) children have tested positive for the genetic mutation. The mutation rooted at the beginning of my life of health issues. Lauren is symptomatic. Drew, to the best of my knowledge shows no symptoms.

NEVER would I “blame” God for any pain and suffering this world offers us. And I’m well aware of the entity, his minions, and their desire to rip as many souls apart from God as possible in the time they have left. Though I may trip and fall, and do so many times, my faith will never be shaken loose. 

God has granted me what I call “unexpectedly growing old”. This blessing has allowed me to witness more milestones and memories than I ever expected. But yes, there is another side to “I’m still here”. It means I’m still on this planet and all the emotions a man can experience are tearing me apart.

The genetic mutation, killing my daughter, their father passed down to his children as their inheritance. It doesn’t matter how many times “anyone” tells me , “You didn’t know.”, the fact remains the same. My daughter suffers because of me. I suspecrt my son lives in fear because of me. I bear this guilt despite my complete logical understanding of the facts. IT DOESN’T MATTER! As their father, I failed to protect them and I am powerless against the enemy. My only hope rests in the hands of my God, my Father.

Lauren is nearing the point where my only chance of survival was a lung transplant. Medically, I’m a statistical anomaly as it relates to my survival with the lung transplant. “Statistical Anomaly” is the scientific name given to what I call the “Grace of God.” As such, I also recognize my continued survival as way outside of my own control. God can call me home anytime He wants…and that’s ok.

Yet, if we are to discuss “statistics”; I could witness Lauren’s demise. One of a parent’s worse nightmares, taughts me endlessly as I stand powerless. 

Lauren walks with God, as does her husband, Josh. I find peace in that knowledge. As for Drew and his wife, Kat, I can only sow the seeds I can’t change their hearts, minds, or beliefs. Yet I ask, what father has the capacity and fortitude to watch helplessly as his child suffers, knowing Christ as their Savior or not. None worthy of being called “father” is my answer.

Matthew 18:19-20 (NIV) 19 “Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven. 20 For where two or three gather in my name, there am I with them.”

Therefore, this is the prayer I have asked of my Father. If you are compelled, I would ask you gather in His name with me

My Father,

I won’t pretend I’m strong enough to bear what I ask for, but I do so from the love of a father for his family.

I pray you allow me to carry the genetic curse inside me and my children (alive and to come) to my grave; that none shall know its sting and suffering. Allow me to be the last, the end.

In Christ’s name, I beg You to forgive the sins of my ancestors who brought this curse upon my family.
I pray You forgive me for being so bold to ask I no longer be powerless against my enemies.
I pray You forgive me for asking that I no longer be forced to stand and watch my beloved suffer.
I pray You hear me cry out to You, father to Father.

As our Father, You know the love one has for his children. You see the pain and suffering a father bears. You know the lengths a father will go to protect his family (wife, children, all those he loves ).

Your only begotten Son, was separated from You as a sacrifice for the sins of every soul who would believe. It is far beyond my comprehension the pain You endured as Father to Your Son and my savior, Jesus Christ.

Father, I come before You “of little faith.”  I come before You lacking “faith the size of a mustard seed” incapable of “moving mountains.”

Lord, all I have is FAITH, BELIEF, and TRUTH. You are my Maker. Jesus Christ, Your only begotten Son was nailed to a cross as a sacrifice for my sins. He died for the sins of every soul alive, dead, or to be who will have faith and believe.

Lord, I pray you would remove the curse festering inside all my family and children. Allow me to carry this curse alone unto its death; that it no longer exist and be powerless; and at Your call to Resurrection it shall only know death.

I know the Truth, You need only say the word and this would be done.

I know my life, my body, and my soul are not worth the water inside me.  

I am no more special than another man or father. Indeed, if I am like any, I am as many other fathers who have come before You praying for power to protect those they love; just as I come before You now.

Father, I am weak and broken inside, this You already know. Only through You shall I have the strength to overcome this enemy.


Lord, throughout my life, You have been the Father keeping watch over me. You have straightened the curves in the path when I’ve gone astray. You have blessed me beyond my understanding and imagination. This I know as Truth;

I shall remain forever grateful and faithful.

May my love as a father to his children be as Your love as our Father; for Your Son; for Your children.

May my life and faith be of sufficient value for that of my family and children.

Lord, I pray You hear my voice and find me worthy of your Grace. 

Lord, my faith is with You, always. Your will shall always be done. This I know as Truth. Your will be done, on Earth as it is in Heaven. My life, my heart, and my soul belong to You. Your will be done.

Amen.

 

Medical Mystery Machine

~ William Turner ~ Leave a comment

[ MEDICAL ] -WHAT’S IN A WORD: In the previous post of the same title, I shared my diagnosis of pneumonia. This diagnosis was provided by a radiologist who examined the PA/Lateral Chest X-ray (otherwise front/back and sideways). Something I failed to do was read the words as they appeared on that report.

“There are patchy infiltrative changes in the LEFT lower lobe. There is no pneumothorax or effusion. Clinical correlation for pneumonia is recommended.”

What words have captured my attention? The radiologist states that the images recommend a diagnosis of pneumonia based on clinical correlation and experience. The diagnosis is in the “LEFT lower lobe.”

“Patchy Infiltrative Changes in the LEFT lower lobe.” 

How can the order of words make a world of difference? The radiologist’s words indicate the entire left lobe. The diagnosis is only half correct. Yes, there are indeed “patchy infiltrative changes. ” However, the X-ray images likely present a diagnosis beyond the radiologist’s expertise.

The X-ray images offered a view of titanium sternum wires, bone cement from spinal vertebrae T8 to the lowest boundaries of the imagery, and the item this radiologist didn’t recognize.

Bronchiolitis Obliterans Syndrome

Imagine the difference if the words in the report read “lower left lobe.” 

Medical Mystery Machine

~ William Turner ~ Leave a comment

[ MEDICAL ] -TEST RESULTS: The radiologist’s report from a chest X-ray performed on Thursday, August 22nd, states, “There are patchy infiltrative changes in the LEFT lower lobe. There is no pneumothorax or effusion. Clinical correlation for pneumonia is recommended.

Labs are still being processed; however, the available results are within normal limits. The only exception is my glucose level. As I’m diabetic, the elevated level is not anything surprising. Between my typical high glucose levels and taking a higher prednisone dosage, the value is well within “my” normal range. My WBC (white blood cells) is below the threshold indicative of infection. The antibiotics are apparently working.
     Many people fall victim to various forms of pneumonia. The term refers to both infections and the presence of material that is present where it doesn’t belong. How we find ourselves in such scenarios can vary from advanced flu-like conditions to aspirating on your food/stomach contents.

[ MEDICAL ] -CRAZY $4i7: Those familiar with my uncanny ability to defy the odds of medicine are likely waiting for the “What the heck has he managed to accomplish this time?”
     Well, suppose we start by setting aside this situation existing as evidence of any new transplant rejection. In that case, the likely method of developing pneumonia is very much inside what is known as my “normal.”
     Last weekend (August 25th timeframe), I walked around the backyard with our dogs. I would bend down several times and extract toys that were becoming “One With The Earth.” Whenever I liberated one of their toys, anything covering or within them became aerosolized (or airborne). Examples of the airborne particles would include ordinary dirt, doggy poo, things feeding on doggy poo, and other biologicals.
     Dirt is off limits to transplant patients (compromised immune systems) as many organisms (deadly to said population) call it home. However, toss some of those little critters into the air, inhale them, let them settle at the bottom of your nice, wet, warm lungs, and then welcome The Clampetts as they enter their luxury mansion.
     Once again, Bootstrap creates his own definitions of “medical issues,” which are always contrary to what most humans know.