Here’s a quick update from yesterday’s appointments:
1 – Met with a new rheumatologist from UMC @ UPH. He was very thorough and empathetic. He wants to gather info from my other doctors before devising any new treatment paths. I’ll be meeting with him again in a month
2 –Met with my Pulmonologist in the afternoon. Here we discussed my last CT scan, blood work, etc. Last CT scan shows an increased amount of scarring and granulomas, so he’s increasing my chemo drug for now and we may increase it some more in the near future. Blood work shows potential of diabetes so I’ve got to try to alter my diet, exercise and lose some weight. Additionally, my lymph nodes are going crazy as thought. Some are pressing on nerves, others causing headaches, spasm and all kinds of fun stuff. The only options available are to either go back on high doses of steroids or suck it up and deal with it as best we can with low-dose morphine and meditation exercises. Steroids are out of the question because of the side effects and the damage done to some of my organs leading to potential diabetes. (FYI – I’ve gained 65 pounds during my steroid treatments. I’ve lost 39 of those pounds and have another 55 pounds to go!)
I took a PFT, pulmonary function test, which showed improvement over past tests. This means that my body is adjusting to the reduced lung function. For now, he’d like me to see if I can go without oxygen assistance for short periods of time. He also ordered a new sleep study, which I will do tomorrow, Wednesday. I’ve been having problems with too much back pressure from my CPAP machine. We may be changing to a BPAP machine. Not exactly sure that I understand the difference between the machines.
Next: dealing with my insurance coverage changing as of August 1st – (now that I’m receiving SSDI, I no longer quality for the state’s health insurance program) I will no longer have prescription or medical equipment coverage. With bottled O2 running about $10k per year, not including BPAP or concentrator equipment, I’ve got some homework to do. If I can go without the BPAP equipment I may be able to trade in my current concentrator for a portable unit. This unit would work, plugged in, while I’m at home and would work on a battery charge while on the road or away from the house. This would also replace my need for expensive bottled O2. At issue is that the portable concentrator costs in excess of $5,000. With the equipment being somewhat fragile, I’m going to look into options for renting a portable concentrator.
I’ve also have to work on filing for grants for my more expensive medications ($2K+per month) with generics cost at $20 per three month period from the Walgreens Discount Plan.
So lot’s to do but hey, with SSDI, my health is my full time job. Things are falling into place and I am both confident and blessed that answers will be found and improvements will be made. As the docs continually remind me, though there are no cures, there is plenty we can do to attend to quality of life issues.
That’s it for now my friends. Be well and in touch.
/Mark - 520-668-7425
