It's an awkward time

It's an awkward time

I'm fresh from a week at National Jewish Health in Denver, having had dozens of tests and procedures performed to try to diagnose and treat my lung disease. The final diagnosis is interstitial lung disease (probably the sub-category called usual interstitial pneumonitis), which has a very grim prognosis. The doctors tell me that if nothing changes in my treatment, I won't live 5 years. And, if treatment changes are made and one year from now I am assessed at the same lung function levels I am today, we will consider it a success. The meaning of words like "treatment" and "health management" have changed significantly for me in the last few days.

I'm on oxygen 24/7 now, which means I must calculate how much O2 (that is, how many and what sizes of tanks) I'll need whenever I leave the house. I also have to be prepared for problems like car trouble and equipment malfunction, so that means carrying spares of everything. I will never be truly portable again. And riding in someone else's car as a passenger seems like it would make it easier. But in fact, it makes it more of a challenge. I am fortunate to have a Honda minivan, which is configured nicely for a person with arthritis, with plenty of room to set my tank upright in its trolley on the floor in the back seat. Most cars (not including vans) are just not as user-friendly for people who carry O2 equipment. For me, the Odyssey is perfect.

I'm still working. My family is encouraging me to file for disability. But from what I've read, I must stop working in order to begin the filing process. Because I work a fairly sedentary job, I can still function well enough to do my work. I'm at that awkward stage where it is an inconvenience (and annoying) to deal with the tanks (I usually carry 2, just in case), but I can still do my job. This sounds like a bad situation to be in. But when I think about the next phase of this disease, I can't believe I haven't pursued the disability claim yet. I never thought it would be difficult to make this decision, assuming that "decision" is even the right word. It's not like I can just choose to become disabled. The decision will be made for me by analysts who examine my medical data and absentee records. My choice, I guess, is in deciding when to stop working. But if I can work, I want to work. It is a dichotomy. And to make it more of a challenge, I don't particularly like this job that I'm still capable of doing.

I'm guessing that at some point (a few weeks? 6 months? A year?) I won't be able to carry enough O2 with me to do a full day's work, or I will feel too bad to come in to the office. When that happens, the disability "decision" will be easy. In the meantime, my family doesn't understand why I continue to work. I'm not sure I do either, except that part of me is scared to death to stop working.

Walking with Monty

 
Yesterday I took my dog, Monty (Basset hound), for a walk. Or I tried to. I was using a small portable O2 tank with a conserving regulator set at 5 LPM. 5 LPM is lower than my official dose of 6 LPM when active, but it is the highest setting on that regulator. It has been sufficient in the past, at least for the most part.

Usually, if my O2 saturation rate drops below 92, I will slow down or stop or focus on my breathing method and my O2 usually comes up to an acceptable level. But this day that didn’t happen. Even though I was doing my breathing exercises the entire time, my oxygen levels hovered around the low to middle 80’s during most of the walk, whether I was going uphill or down, and it didn’t recover when I stopped. Even Monty, who thinks of a walk as a long series of smell stops, thought I was going too slow. It wasn’t until I reached the driveway that my O2 sat rate finally climbed to 90.

I know I need to order the high liter flow conserving regulator that goes up to 6 LPM. There is only one made that goes up to 6, near as I can tell. Once I surpass that liter flow dose, I’ll no longer be able to use conserving devices. My world just keeps getting smaller and smaller.

I realized a few days ago that it will be tricky for me to negotiate a buffet line at a restaurant now. My husband and I used to love to go to Furrs with my parents. Greg tells me not to give Furrs up yet, that he will carry my tray. I am so very lucky to have him! I will be giving up a lot of things in my life over the next months and years, and he is determined to make that progression as slow and as painless as possible. I love him so much.