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.

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  • 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.

plasmapheresis

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

How I Got Here (Part 4)

During my senior year in high school, I got a job working as a “stock-boy” at the Walmart store in Smyrna.  I think I mentioned the band I played in during high school.  Being a broke kid, there’s only one way to get money to buy the music instruments you “really” want…get a job.  And as I said, I did.  My good friend Ted Roberts put in a great recommendation for me and the job was mine.  I don’t think there was a huge line of people waiting for a job cleaning toilets, mopping floors and hauling stock around.  Didn’t bother me at all then…nor would it bother me now to get a little dirty while working.  If I had the physical ability…I’d love to spend time with my son (Drew) at his business, Deft Motion, helping him in his shop.  It’s one of those situations where I’d love for us to share what we know…together.

What Keeps Me Sane?

Most recently…I’d have to say that’s a very interesting question. I’m not sure I have a valid answer for the question. Sure, I have an entire regimen of psychoactive medications of which their sole purpose is to help maintain my mental health. But…I’ve gotta tell you…either I’m getting old and crazy OR the medications don’t work as good as they used to. Of course, there’s the double-down answer where old age AND decreased effectiveness are rendering me a little less sane as each day passes.

I thank God for ALL of the blessings He has bestowed upon me over my lifetime. Right now, I’ve been praying for a gentleman named Daniel Lyn Graves. If you’re interested, during your prayers…ask God to inspired Lyn and be his guide and source of words as he continues to work on my Federal District Court lawsuit against the Social Security Administration. Yes…you are correct…I’m STILL trying to get approved for disability. I refuse to print the long list of medical and mental issues that I deal with daily…I’ll just say the list grows longer as the days go by. I’ve even managed to add two different forms of rejection with my transplanted lungs.

But…On March 20th…I did get to celebrate my Sweet 16. Yes, sixteen years since a very generous family granted me the gift of an extension to my years here with my family and friends.

May God bless you and keep you. — Mr. Bill

Huff..and Puff…and Blow Through The Spirometer.

It’s been a long time since I added anything to my blog.  Between Heather and I moving to Florida, all the unpacking, finding new doctors, and all that stuff…has left much time for me to write.

Today, I’m presenting a chart that sort of speaks for itself and should give you a clue about at least one of the little battles I’m fighting at this time,

I’ll share more when it’s not 2:30am in the morning.

WJT-PFT-History
Pulmonary Function History

Yeah…it might be an ugly looking chart…but I’ve been given the ability to see and do things many people in this world shall never have.  I’m am very grateful for these blessings.

— Bill

Fifteen (15) Years…And Still Ticking

So…If you read my post on March 20, 2018,…you know that I just celebrated fifteen (15) years since receiving my double lung transplant.  I also made a trip to Vanderbilt for my clinic visit that day.  For those who are curious, time has granted me a few rewards…and a few new issues.

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  • Prograf (tacrolimus) dosage and blood level goal has been reduced.
  • A1C is down to 5.8 from around 7.0 (would indicate a pre-diabetic level).
  • Since last April I’ve reduced my weight from ~245 lbs to ~200 lbs (I’m floating between 200 and 204 depending on the day).  When my thyroid went south, I gained over 25 lbs in about a month and a half.
  • “Fish Oil” has been added to my daily chemistry set.  My cholesterol and triglycerides are on the “high” side.
  • Vitamin D intake has been increased to 3x/week.
  • Imuran (azathioprine) has been put on hold until I see rheumatologist tomorrow.  I’ve been experiencing severe joint pain for about the last three (3) months.
  • Prednisone dosage has been reduced to 5 mg daily.
  • FEV1 (lung capacity) is showing a steady decline.  I’m not sure if I can equate that to lowered exercise tolerance due to the chronic pain or time just taking its toll.  If I remember right, my level was 2.93 (liters on a 4.0 scale).
  • Butrans (pain patch) has been increased to 20mcg/hr (gets replaced every seven days).
  • Neurontin (gabapentin) dosage is increased to 1200mg 3x/day (helps with pain).

I’ll have to get the “blue box” out and a complete count of how many medications I’m on at this time.  I’m sure it’s approaching twenty (20) again.

How is it my friend Barb says. “…barely living through chemistry”.  I agree wholeheartedly.

Until next time…God bless you and keep you.  I would be celebrating this fifteen year mark without the grace of God.

God’s Timing Is Perfect…And Absolute.

Many times throughout my life I’ve heard and witnessed the quotation, “God’s timing is perfect.”  I’ve also heard it said, “God moves in His own time.”  It’s our duty to pray that what we are doing in our lives is in line with God’s timing.  Sometimes it’s very hard to ascertain whether our decisions are inline with God’s desires for us…other times it’s blatantly obvious the position our lives are proceeding in regards to His plans.  We pray for guidance and wisdom.  We humble ourselves in front of our Maker and pray that He shows us the way to prosperity and life according to His plans for us.  In my own life, God has and continues to provide for me.  The more I humble myself and relinquish control to Him…the more I see His ways have always been the better way, solution, etc.

As we inch closer to the “End Times”, we as Christians will see an increase in persecution.  It was written.  It is happening.  “Those with eyes will see.”  However, by no means does that indicate God has abandoned us.  We continue to witness events when God’s “will” and “timing” align at the perfect moment to provide a teaching moment (for believers and non alike).  Unfortunately, most non-believers will write these events off as “coincidence” or “chance”…but the Christian will “see” the event for what it is.  God at work.

I present the following as a perfect example deception in action. Please note this is “not” my video and for all I know it’s fake.  Even so, if it is fake, the video presents a scenario that could easily happen in any city in the USA at any time today…so many lost souls convinced Christians are the “enemy”, “hate mongers”, “white supremacists”, “Bible-Thumpers” and many other derogatory terms.  The video demonstrates the hearts and minds of our young people…hardened to the point they are blind to the truth of God’s will.  They have fallen victim to the deceptions and plans of the master of lies.

I claim no copyright to the video above and present it here only as an example of the state of our country, the depths of depravity it has reached, and the perfect dispensation of justice from God for those who would mock Him.  Again…fake video or not, the events played out in the video…are real.  They happen daily.  They will continue to increase.  I am not afraid of them or the ridiculous plans they profess and support.  In fact, they’re “almost” right.  One day soon, we “will” have a “one society” world…two of them in-fact.  The first will fail because it is born upon lies and deceptions.  It will fail because its creator is designing it that way.  The designer is laying the cornerstones for the first world right now…and he’s working hard to take as many lost souls to Hell with him as possible as he’s building it.  The second, established with Jesus Christ at the center and upon the throne will prosper on Earth for a thousand years…and then in Heaven for an eternity.

Now back to the video for a second.  I ask you, why must the young pro-communist men wear masks?  If their plan for our society is so “great”, “perfect” and “inevitable”…why must you mask yourself?  I hope you notice the men, women, and children marching in the video; preaching the Gospel; wear no such masks.  The promise of life everlasting is their protection…not a flimsy piece of fabric over their faces.  That flag represents the cross upon which our Savior, Jesus Christ, died for our sins…even those masked-men who speak against it.

Who is protecting those masked individuals?  Is it the same entity who hides himself in dark corners…who reaches out to ruin the lives of all willing to follow his false teachings?  Where will his “protection” be when these masked men stand before God at the Great Judgement?  My Christian friends know the answer, he’ll be bound with chains and sitting at the bottom of a lake of fire.  My protector, Jesus Christ, will be at my side as I stand for judgement. No! Jesus will stand beside me as I “fall to my knees” while all of my sins are rolled off…on by one.  But “my” protector, Jesus Christ (The Savior), will be there to lift me up…and tell me I am forgiven.  As for the young “masked men” in this video, I think these events are prophetic and speak for themselves.  I think this video is just a precursor of events to come for those who continue to follow the false teachings of Satan.  I pray these lost souls open their eyes…see the deceptions they have followed…and turn to God and “love”…not the “hate” they have so blindly spewed.

And my lost friend, that flag…leading a crowd of people from quite a few ethnic groups is “not” a covert symbol for white supremacy or hate or violence…it carries the symbol of everlasting life and love.  It bears a cross…it holds no secret message other than to remind us of the price Jesus paid to forgive us ALL of our sins…even those who speak against it.

Peace be with you my friend…and may God bless you and keep you.  May your heart soften and find the love of Jesus Christ and set aside the hatred that blinds you from the truth.

Amen.

I Want The Knife…Please.

So, a little backstory first.  Back in the spring, Heather, Barb & Bill (friends from Ohio) helped build a knife throwing target in my garage.  The construction was inexpensive and the knives are really cheap to purchase.  My thought process was to create a low-impact method of getting some much needed exercise.  After a little graffiti…this is what the target looks like today.

Last night, Drew got his first shot at throwing knives…and from what I can tell…he liked it.  It’s not only a nice way to improve certain skills…it’s also an excellent way to relieve stress.  Nothing like throwing a couple dozen knives at a target you can imagine as your worse enemy.  A great way of bonding with your kids as well.

We did have one casualty.  We now have a nice hole in the drywall just below the plywood.  Who knew tomahawks also stick handle side first. :). They also stick blade side first as well (just above the plywood).  Aim is optional when throwing at my house. The last casualty is a result of faulty manufacturing.  Here are some pictures of the S.O.G. Hawk that died before its time.

If you notice the left side of the handle vs. the right, you can see the inconsistency in the steel of the tang.
Looking down at the other side of the break, but on the blade section
The entire broken tomahawk. A closer look at the blade section of the hawk.
The general idea what the tomahawk is “supposed” to look like.

The hawk is supposed to have a “limited lifetime warranty”…so I’ll let you know if S.O.G. sticks to their word.  This is clearly a manufacturing defect and not misuse by the user.

By the way Ronnie Amans, I told Lauren you challenged her to some throwing. LOL.  She said, “Bring it on!”  I think you’re in trouble, bro.  With the temperature down, it’s much more tolerable in the garage.  In fact, we might need to put a small heater out there to get the target to loosen up a little…that pine 2×4 is hard as a brick.

I’ll post some pics of the knives we’ve been throwing in another post.

Later.

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How To: Build Your Own DVR/PVR System

Several years back, I began building a Personal Video Recorder (PVR) system with WiFi enabled receivers for each TV in the house.  The project belongs to my wife…and actually saves us several hundred dollars a year by ditching those satellite and cable packages.  It’s still a work in progress and I try to improve it when I can.  I’m considering writing a technical article on how to “build your own system” and wonder if I should post the series here or submit the series to a tech blog.

Our system uses an HDTV antenna mounted in our attic (prevent the wind from blowing it away) to pick up OTA (Over-The-Air) TV channels,  an EPG (Electronic Program Guide) software module so you can save episodes of your favorite TV show.  The main box has the ability to store your movies, tv shows, music, photos, and many other items for view on the WiFi remote receivers.  Each receiver also has the ability to utilize user installed “add-ons” to receive entertainment material via their Internet connection(s).  There are tons of free channels providing thousands of programs from across the globe.  The material ranges from children’s learning programs, sports, cooking shows, and even adult entertainment (with Parental Controls of course).

I’m not interested in selling these systems…just writing up this article series on how to build them.  I would consider this a way of giving back to the geeks who took the time to post all the information/development it took for me to build this monstrosity.

So…any votes?  Also, does anyone know if tech blogs/magazines pay for submissions like this?  That would influence my decision (duh).  A little extra cash would most appreciated at this time…the wallet is feeling VERY light these days.

It would probably take at least five to six  parts to adequately describe the build process…I just hope I can keep my ADD in check.  I still have tons of testimony to share…which is STILL my first priority and what I feel is my current calling.

Heather and several friends of mine continue to tell me they enjoy reading my posts…I just hope they can handle a little geekdom  mixed with my serious writings.

Thanks in advance.

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All I Want For Christmas…

Is exactly what I got.  All I wanted, over any gift or such, was to be able to spend time with my wife and kids.  Heather baked a chocolate-strawberry cake that I cut into the shape of a cross.  Lauren decorated it.  Heather also made a strawberry “Happy Birthday Jesus” cake.

 

 

 

 

 

 

 

 

Drew and I wired up a “turbo boost gauge” that he’s using as the star on top of his office Christmas tree.  I loved it all.

Here’s a short video of the gauge and what we used to make it zing…. Video Of Drew’s Turbo Boost Gauge.

 

Thank you Lord for the great blessing.

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Prayers vs. The SSA

Many of you know that I’ve been trying to get back onto Social Security Disability since February 2013.  I’ve been denied twice, been in the court room twice…and still I wait for an answer.  Two days ago, I received letters back from Senators Bob Corker and Lamar Alexander.   I called upon them for any help they might be able to provide.  The SSA responded with two completely different answers.  To Mr. Alexander, they told him that SSA is waiting on more information.  An outright lie.  To Mr. Corker, they told him a decision was being rendered and would be delivered in the near future.  My attorneys, well…they told me it can take six months to get a simple written decision in the mail.  Oh, btw, the judge told me it would take her 30 to 60 days to get that written decision to me.

Now here’s where I’m confused.  Heather and I have been praying for an answer in regards to this mess.  What on Earth is God telling me?

Needless to say, the details here are just a small chip off a huge pile of dung.  I can’t type fast enough to lay out all the details.  Do I “deserve” disability?  Maybe not.  Maybe I am still capable of working.  I mean, I only have a few ailments and no immune system.  Nothing big ya know.  In fact, I gave up my disability to try and work again.  I felt like a leech and thought I could still contribute to the workforce.  After being terminated for “absenteeism” due to illnesses at least 8 to 10 times…Heather convinced me I should reapply.  Heather and my friends and family convinced me that’s what SSA is there for…people like me who can’t work anymore due to disabling situations.  I know at this point…my brain is completely disabled.  I simply can’t comprehend why my case is so difficult to define.  Every one of my medical and mental professionals are simply in awe of the fact that I’m “not” receiving disability services.

Me, this entire situation is taking its toll on me.  I’m not the most stable minded person these days and each letter I receive does nothing but drive me deeper into a pit of despair.  Worry is a sin…my faith is supposed to rest upon God.  I’m supposed to have faith that God “will” provide for me.  When I get to Heaven, I want to compare God’s watch and my simple Timex.  It’s quite clear in many of our lives that God’s time is never quite inline with our time.