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.

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.

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

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.

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

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.

• 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.