The Passenger’s Log Stardate 13 Dec 2021
Diverted to Cleveland
Thank you for taking the time to read ‘The Passenger’s Log’ for this date. Today is the long awaited results from Dr. N’s office on the progress – progress either that I am making or that the disease is making. I thought about naming it, the disease that is, but no matter what name I came up with I thought of someone that might be offended by their name being affiliated with a disease. Since Muscular Dystrophy is related in the form of fibrosis, I thought I might call it Jerry but then I thought it would be better Dean… I scratched both of those. Giving it any name other than Oyeb did not seem appropriate. So, Oyeb is its name. It is pronounced o-yabe’ which is a Hebrew word meaning enemy. So, Oyeb it is.
The Passenger’s take on this morning’s visit with Dr. N.: I did not hear anything I was not expecting. That is neither positive nor negative, it is just is what it is. Would I have preferred cupcakes with Guy Diamond glitter? No, not really. I cannot fight that which I do not know and to be a ‘FIGHTER”, as the t-shirt Ally got me, means I must truly understand Oyeb and I intend to fight.
Here is the meat of what we learned this morning. A review of the pulmonary function test (PFT) shows a decline in my overall lung function by 7 percent since July. Not horrible but not positive. The question is whether we can find ways to slow its progress. More on that in the options part. The walking test showed a more rapid de-oxygenation and a shorter distance completed in the same time frame as the PFT.
As we know, steroids, which I’ve been on since spring, can cause weight gain. I am up about twenty pounds, not good. (One of the treatment options may reverse that a bit… more in a moment). My blood pressure was elevated but it could be an anomaly. We will follow that for Rx changes.
PLAN and OPTIONS:
- Dr. N strongly encourages me and those around me to get a booster shot as soon as possible to prevent any future complications of COVID
- Referral being made to Universities Hospital Cleveland for a complete review and second opinion. Doc wants to make sure he isn’t missing anything because my case is unique.
- Based on what UH tells us, there are two new medicines on the market from within 5 years that can significantly slow the progression of IPF.
- Both have potential side effects.
- Both are life-long meds, that is once I start them I am on them – whichever one we choose.
- The one with the least issues could help me lose some of the weight but it wouldn’t be in the best way possible. How do you spell bidet?
- Both medicines cost upwards of $60,000 per year.
From the Spiritual Perspective…
An atypical source for spiritual enlightenment, Sun Tsu, an ancient military strategist is famously known for the quote, “Know you enemy before you go to war.” I will seek to learn all I can about Oyeb but there is a deeper understanding for those who know that Christ is the Captain. It is He who has already won the final battle and it is He who controls the intermediate battles as well. So, with all deference to Sun Tsu, I would say, “Know your Captain”. He is the One who takes away all fear, all shadow of turning, all sense of not knowing the future. He conquered fear and death. The Bible clearly states there is no turning, He is who He says He is and He is already in the future. He knows my beginning from my end and every day in between. If there is any confidence in facing the unknown of disease it is facing it under the sheltering wing of Christ who has already traveled every road I may possibly travel and His promise to never leave or fasake me stands as true today as when He said it two-thousand years ago.
I ask for prayer for my family. They struggle, of course, watching ol’ Dad or Pop or Papaw, going through this. Help them to reach out to Christ who is the source for strength and encouragement. And finally…
You may have noticed that the usual photo of the Starship GENESIS Two Seven is not at the top of the page. Because of all the uncertainty that seemed to be swirling around the upcoming meeting with Dr. N, (we still do not have approval from insurance for a new CAT scan… ) I felt it would be good to meet one of the most prestigious of our crew. The Flight Officer in charge of Intelligence and Security, Sid. Some of you may know him from his earlier movie career exploits but he is the one who is in charge of everything relating to something regardless as to whether or not anything has been done. He is very approachable. In fact, Sid likes to let you know that ‘his door is always open’ but honestly, it is because he lost the key and doesn’t dare close it! So there you are, one of our special crew, Sid!
May God bless each of you. Your prayers for me and my family are greatly appreciated. We will continue to fight Oyeb together and know that Christ is the victor!!