Rise and Fall of My Pulmonary Rehab

By way of introduction I am Darrell, part of the BBLW Team and I hope to be posting here occasionally. Thanks for reading.
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I'm happy to hear that many of us are active now in pulmonary rehab programs. These programs provide so much for us. The exercise is essential but the education, friendship and support are so important to keep us on an even keel. Plus they motivate us to do the best that we can.

Today was sort of like the rise and fall of a PR program for me. Our maintenance group is being moved to a new facility at the local YMCA and rearranged in several ways. The new program will require a YMCA membership and will provide a walking track and all the usual gym equipment and amenities. I'll go there on a trial basis one day next week to see what my wife and I think of the place. The PR side of the service will include one day per week scheduled visits with an RT who will monitor our status, performance and progress. The deal for me would be to drop my current gym membership and start a Y membership with a little bit of savings. The deal breaker for me is that (1) it seems few if any of my current maintenance group members will continue at this new venue and (2) I'm not prepared to drop my current gym friends who I have been working out with almost daily for the last few years.

The rise of my PR program started over two years ago when my doc referred me there for the full basic 8 or 10 week program. I learned alot and befitted greatly from that experience not only in knowledge and exercise but in finding a better acceptance of my condition and a level of comfort in dealing with the issues we as COPDers face. Following that "graduation" I went on to their "high performers" program which was to continue my own regimen and check in once a month for monitoring at PR. That program went away after a number of months and a recognition that most of the high performers were self motivated and likely to do well even without the program. The program was eliminated to make way for those who needed it more.

Then last year after a nasty exacerbation I was recommended for a lung transplant evaluation which required that I go back to rehab. That was good news for me and I was pleased to go back to my twice weekly PR maintenance sessions at the hospital. I established good relationships with the other patients and with the staff and PR became a part of my personal "wellness program" together with my three or four days each week at my gym. The lung transplant evaluation was completed and it was determined that I am currently functioning at a high level, regardless of my clinical results, and was not recommended for transplant now. So I continued PR because it seemed to be working for me.

Then another "good" thing happened when Medicare decided to cover PR expenses. Good for basic rehab where they now have a six to nine month waiting list for the program. I don't think there was much if any waiting list prior to the Medicare decision. Naturally with the expanded demand they have to maximize the use of the facility and the number of patients they serve. So here we are being rewarded for our success by being referred to a new program which as far as I can tell no current patients are signing on to yet. Who said "nothing succeeds like success"? It seems today that to be rewarded all you need to do is make loans that can't be repaid or build cars that nobody wants to buy. Maybe an occasional ponzi scheme or accounting fraud.......................

I am very grateful for the opportunities I have had to work these programs and the benefits I have received and I'm sure I'll do quite well in the future, with or without them, but I am concerned for most of the others in the PR maintenance who may not be self motivated. They need the structure and the commitment to the program, staff and to the other members who won't hesitate to say "Hey! where were you last week". For these people it has nothing to do with resource utilization and efficiency. I wish them all the best in their quest to keep on breathing.

Darrell

Improvement

Week two back at pulmonary rehab has seen an improvement in my endurance with the exception of the treadmill. My hip is burning by the time I reach 5 minutes on it so I'll have to take that one very slowly.

I increased the NuStep time to 15 minutes, doing 1200 steps. I felt okay with that, with only a little pain in my right shoulder. I continued doing about 84 steps per minute.

The Upper Body Ergometer really burned my right shoulder and arm, but I stuck it out for 15 minutes. When I was done, I realized that the resistance was cranked up pretty high, so I'll pay more attention next time. I think I'll be sore tomorrow.

My blood pressure went from 142/79 after the TM, to 99/65 when I was done with all of the exercises. My sats when I started were 94% and when I was done, were 97%. I think it's pretty apparent that exercise helps the heart!

I left rehab with a sad heart. I just found out that Audrey, the 12 year old who got a double lung transplant 2 years ago, is very ill. She is now 14 and had 2 really great years. In the past couple of months, her PFT's have steadily decreased and her shortness of breath is increasing. The hospital in Boston has done everything that they can, including some experimental things, but have had no luck improving her condition. They have apparently opted not to retransplant. I can't imagine what her parents are going through right now - Audrey has made her own funeral arrangements and this must be a very difficult, if not impossible time for them.

If I ever needed to appreciate my own health status, this would be a good start.

~Eileen