Thought I'd just give you an update on my situation. I am still at the inpatient hospice facility. I perked up a lot after the first few days then I started a backwards slide. I have been having night sweats and last night I almost felt delirious. My temperature was normal at that time but it now stands at 100.2. So, I've caught something.
We have figured out a lot so far. I was on 2L of oxygen but on Sunday I had the bright idea to bring along a portable pulse oximeter (measures the oxygen levels in you blood stream on a walk outside). Bill, the kids, my brother Mark and his wife Cindy all set out for the slowest walk ever. We noticed quickly that my saturation levels fell to the low 80s very quickly. Tricky Bill increased my oxygen from 2L to 4L and, lo and behold, my oxygenation increased to the low 90s. So now we know I need 4L on exertion. I can take the walks (about .2 miles). They are exhausting, but I need to do them so my joints won't ache so much and to counteract the tightening of the skin in my legs.
It almost seems like I am going through the first few years of the disease all over again: the itchy skin, joint pain, night sweats, etc all bothered me during the early years but resolved. And, now, they are back full force.
We are still messing with the cardiac medications so that we can get me to a more normal resting heart rate. The Fentanyl PCA pump (24 hours of continuous Fentanyl with a patient bolus allowed every 15 minutes) is helping with the cough. So we are making progress. Hopefully the fever will be short lived.
Bill tells me I have had lots of typos lately. I tried to fix the last two post, but I have the excuse of being doped up at all times.