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.
