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Hello Family and Friends,
I have been trying to figure out how, what to write for a week, plus or minus. I am just going to bite the bullet so to speak and go for it and if necessary I will back track.
I had been feeling like I was spiraling down since around Christmas, but wanted to blame lots of other things for how I was feeling besides the disease itself. I had just tapered off Prednisone (more on that in another post), the holidays and all that comes with that. Maybe an infection, Oh Please an infection. Damn no Infection!!! Kept waiting for a fever or colored mucus something other than just getting shorter and shorter of breath.
On Monday January 3rd I was finally forced to pay attention and call someone, so I called the Respiratory Therapist from my home oxygen supplier. She came out within the hour to spot check me. We walked about 30 feet or so and my blood oxygen saturation dropped to 71%. This with the oxygen I was taking in set at 5 liters per minute. Any movement on my part dropped the levels into the 80% and re-saturation was taking a long time. Long story short I was advised by my Pulmonary Specialist to go to the ER. They faxed info ahead of me and I was taken back right away upon arrival.
Blood test, Xrays, heart monitors etc and admission. Overall thought was that the disease was on the march again. Damn it jim!!!!! Dr Gravelyn came in on Tuesday morning to confirm the diagnosis for the acceleration of the disease. Dr G advised we contact Hospice. He also gave a best guess life expectancy for me of 3 to 4 months. This guess is based on how the disease is progressing with me, statics and his experience as a pulmonary specialist.
We are choosing to accept this prognosis as a gift as a family and have started the process of celebrating the final stage of my life. We are talking open and honestly and we have the opportunity to do so. With any luck in the end we will have unfilled wishes, but not regrets.
Make no mistake, I am not giving up the ship!!!!! Not at all, but I do not understand that I am not the Captain of this ship and I cannot control the outcome. This disease owns me and I cannot simple power through and there are no tools available at this time to help stop it. Ultimately God is in control of my ship and I am giving him the wheel. I am for yet another miracle, but also for his will to be done.
I promise to write more soon about Hospice, etc, but this is it for this issue. I love you all and cherish your love, prayers & support. :^)
