Day 1

Today marks the first day in an experiment involving medications. The experiment will test my overall reaction PH-wise to instant withdrawl from one of my meds. Said med changed my life physically, mentally and emotionally. I had a life again.

I am tied to a railroad track waiting for some hero to show up and rescue me.

One of the criteria for a rescue involves a 6 minute walk. Doctors, drug companies and the government use this test of endurance as a benchmark. Perhaps that measure works in a sense, but each PH'er has his own  achilles heel.

My last 6MW, I felt great. The tech checked my sats at each turn. My o2 fell to 79 after the first turn and continued there for 3/4 of the walk. The tech decided I needed to up my o2. I had to stop and figure out the settings, which were unfamiliar to me. I bet that took at least 2 minutes. I resumed the walk and after a short time, she said quit. Needless to say my numbers showed no improvement.

This test in no way measured the way the new med affects me and my PH. Yet part of the hangup with my med and getting approved for a grant, focuses on this number.

Bottom line for today. The company withholds my med until one of two actions take place.

• No. 1 I contact them and set up a payment plan. ($18,000-$22,000 a month x 12 months = infinity)
• No. 2 The company finally runs out of things to ask for and submits the information to the judgment panel.

In the meantime, Day 1.

My house has fallen apart in the past week. Stress laid me out.

Later, Dude.