I figured it was time for a quick update on the Pulmonary progress. This will hopefully hold place wihle I prepare a couple of non-pulmonary blogs, the aforementioned “silly” things I promised (a review of the new ABC-TV series ONCE UPON A TIME, plus another look back at things past as they relate to things future).
While not unique to my disease, the thrills and perils of the health care and insurance system can be very confusing, if not downright frustrating. Since my disease is “progressive”, I have no hope of turning back the clock. I can only work to slow down the progression as much as possible. This involves keeping a physically and mentally active as I can tolerate.
Such is the case with my current pulmonary rehabilitation. Health insurance requirements limit the number of visits, some as low as 12 up to 36, with few exceptions. Now, think of pulmonary rehab as an gym program, but equipped with monitors and the ability to build your body’s tolerances into the program, along with an oxygen supply, since exertion affects the oxygen levels in your blood.
Knowing that my disease is progressive, you can do the math to figure out that 36 visits are pretty hard to stretch out. This is because these visit limits are LIFETIME, not a year or period. That means that once I have completed them, no more coverage.
So what has been a rehab program that is needed to survive has to be continued in a more gym-like setting. This is the pulmonary maintenance program, which I will use at Bryn Mawr Hospital. The major difference is that there are no monitors or bio-feedback and no central oxygen source. I either have to use a personal tank or work off of a common concentrator, sort of an shared air conditioner.
The good thing is that the cost is much less up front but of course, I no longer have the true ability to know how each minute and change in condition affects me, nor do I have a program built specifically for me. I could probably do this in a standard gym setting, but I would not have the concentrator available, plus doing it at the hospital means that should something bad happen, the medical help is right there.
So, that is how I go forward.
I am on visit 33 of 36 and have come a long way in what I can now tolerate. While these numbers and accomplishments may not impress if I was of normal health, trust me, these are things I never thought I’d be close to again.
When I started I did 3 minutes on the treadmill at 1 mile per hour. Yesterday, I did 31 minutes at 2.2 miles per hour, half of that with a 2 % grade. That means that I finally broke a continuous mile, which was an end goal, and I broke it 4 visits early. The only complication is that my heart races a bit, so that will need to be watched. However, I am sweating up a storm and loving it.
The same goes for my other activities. All have increased since the beginning, in both length and resistance. The UBE arm machine has gone from 3 to 12 minutes, four of them backwards. My stationary bike has gone from 3 minutes at 0 watts resistance to 12 minutes at 50 watts resistance. My arm weights are now 10 minutes at 6 pounds an arm (8 exercises) from a start of 4 minutes at 2 pounds.
All in all, it has been a tremendous accomplishment, so nice because everything recently has seemed to be traveling backwards. Again, I wish I could continue longer, because while finances limit it, the benefits I am getting right now will have a positive impact on how I deal with the further progression of my disease.
I’m not done yet.