Pulmonary Rehab: Take It To The Limit

From my THE OFFICE fan days.

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.

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Expecting Expectations, Getting Ramblings

The item pictured to the left is a portable oxygen tank.

It is my friend. It is my constant companion now when I am out. It is the bane of my existence and the reason for same.

It is no different than millions of others that are needed by millions of people. It may not always look like this. It may be a brace, a wheelchair, a replacement limb, or hundreds of other assist devices.

But this is mine, and it is personal, and it carries my expectations.

Expectations are a funny thing. They can be realistic, yet what defines realistic? Is being “realistic” simply staying within safe parameters? Does having unrealistic expectations mean that they cannot be achieved, or that you simply are afraid to try.

When I joined Twitter(and Facebook), I had varying expectations. I wanted Twitter to allow me to connect with others who might find me interesting enough to think to hire me. I wanted to keep in some sort of contact with my past acquaintances and industry , to try to find a way back into my home for 27 years. I wanted to experience others and to possibly learn.

However, my expectations at the beginning kept me guarded as to who I really was and overly worried about how who I was would be perceived. Those who knew me recognized me, but those who didn’t were approached cautiously.

Essentially I tried to become visible, yet remain anonymous. I expected the same from others.  My expectations were sorely misjudged. I have found that those who I meet on Twitter and Facebook have been some of the most supportive, fun, and caring people yet.

Yet, while I have my expectations, they have theirs, and sometimes, they collide. I follow a lot of sports bloggers, and my expectations of them were of a fun brotherhood with a shared passion. Instead, I found great writers who sometimes seem to expect to be seen as the “go-to” source.  I’ve also seen this degenerate into mean spiritedness and denigration of blogger by blogger, blogger by sportswriter, sportswriter by blogger, et al.

My expectations for one big happy family of sports lovers had to be modified into individual expectations of each writer.

The same goes for my expectations of the rest of my friends on there, and wonderfully, I can say that I’ve developed a very entertaining and comfortable set of friends on there. Some have become very close to me over the last year.

Back to my oxygen tank. I expect we will be inseparable for a long time, at least while outside. I have no idea what to expect about my condition going forward. I choose to set my expectations so that I will always strive to maximize my limits and that I will remain useful and vibrant, even without being able to do work like I used to.

However, I expect to always secretly hate the oxygen tank, if only because it always talks first. Just like a silly hat, people notice it before almost anything else. That means my past method of introducing myself, with a handshake or a “Hello, how are you?” has been compromised by this thing in my nose and on my shoulder.

Even walking in public, it will draw glances, which I do not want. No, a child will not think I am an astronaut. They will ask mommy or daddy in a whisper what this is. It is unavoidable, and I don’t expect to ever shake that feeling.

However, my expectations in public, past that initial stare, is that you see me as you see anyone. Except for a true physical barrier, don’t treat me any different. Treat me as a friend, a customer, a neighbor, a seat mate, a person.

Yes, my life is vastly different now. Money is extremely tight, living costs means that I move into my sisters house, and some dreams and expectations of what I could have accomplished and where I could have traveled in the next  ten years and beyond have to be greatly altered.

However, my expectation is that I will live that life to the fullest, surrounded my great friends , like many of you. And my family.

My final expectation is that on Wednesday, when I finally turn in the key to the apartment, and say good bye to over 7 years of memories with my Dad there, I will break down and bawl. I expect to finally feel the emptiness of the situation, the unavoidable nature that it has to end.

I will be a wreck.

However, my expectations are that life will go on, that I will eventually be comfortable in my new home, and that friends now will remain friends forever. And that what I shared with my Dad with be present in every one of you that I know.

That quarter pictured after this post is the last thing my Dad really worried about. He dropped it as he stumbled backwards and hit his head on Nov. 30, 2010. Even as the bump on his head grew, he attempted to reach down to pick it up. At that moment, that quarter meant the future to him.

It has remained right there since then. It will be the last item I take from the apartment.

I expect that it will always be with me, and that Dad will always make it more valuable than gold to me.