STARDATE 11 MAR 2022
THE QUEST CONTINUES
Since our last update from the visit with Dr. F at University Hospitals in Cleveland, we have learned some new information based on the initial bloodwork she had the Passenger complete.
You may recall they took copious amounts of blood for testing. First, we know for certain that all the blood does belong to me. They were searching for anything immunological that could be exacerbating my lung condition. The results concluded there is NOT anything else going on in my system. The scarring and the hardening of the lungs is due to an isolated disease and not a combination of things. For the most part, that is good news except that had there been something else going on that was treatable, it could have been an advantage. Still, not having anything else wrong is always a good thing!
I took some time to go visit the Captain of the ship in these past weeks and prayed specifically for healing. There have been many folks who are praying and if you are part of that group, and I hope you are, please pray for healing and for strength for me and those who love me. A time of prayer at the Chapel this past week was very encouraging. Still, I confess, I have had better days, as we all have. To claim to never struggle would be less than honest. I do ask for prayer because so often it seems like the focus is always on my expected death and so many things around me constantly remind me that I have disease. It can be very difficult to handle day in and day out. I realize so many have it so much worse than me so I focus on my blessings and try not to let the daily reminders take up too much space in my thoughts. That is not as easy as it sounds. Pray for strength of mind, spirit and body and please pray for the family. Little ones sometimes have a harder time than us grown-ups and often they get missed in the prayer circle. I am confident that God has this all in His plan and I must always expect good things from Him!
The trip recently to Phoenix with Aaron was great for many reasons. First, just spending time with Aaron was terrific. We made a pact to not focus on disease. That helped very much and so did the warm sunshine! The memories we made this weekend and seeing good friends again are precious to me and I know Aaron will keep them for many years to come. “Lazy Boy” my horse was a lot of fun to ride through the desert.
Back to Dr. F. She has come up with a plan for treatment to work to slow the progression of the disease. We began immediately weening off the steroids and in four weeks I’ll be off that and beginning a new medication called Ofev 150 mg. It’s chemical name is Nintedanib. It has some side effects but what medicine doesn’t? If you are of an inquiring mind, GOOGLE it and learn what joys it brings! It must come from a specialized pharmacy and the costs are absolutely unbelievable. Still, we begin it and see how it goes always expecting great things from my God!
There have been so many of you offer their concern and prayers and a few have become so very close. I wish I could name you all but I might miss someone so I’ll just say thanks again to all of you. We continue the voyage seeking out God’s will as we go!
God bless you all.
Ross The Passenger