I haven’t updated my pulmonary rehab for a little while, so now is the time. I’ll be writing this while watching the PHILADELPHIA FLYERS / OTTAWA SENATORS hockey game, so if I accidentally type score, it is simply because I am too excited by the game.
I am now two weeks ( 6 sessions ) away from the end of my pulmonary rehab sessions/workouts at Lankenau Hospital. These are limited by health insurance. I was among the lucky ones, if you can call it lucky, because 36 seems to be the highest any insurance plan will pay for. BTW, those 36 sessions are for a LIFETIME, not just for a year or two. Therefore, I better get the most out of it now, because I won’t have access to this valuable program again.
I will be following it up with a pulmonary maintenance rehab program at Bryn Mawr Hospital. This is essentially a gym setting. The major difference is that I won’t have a therapist to work with me, nor any monitoring equipment to gauge levels like BP, pulse rate, heart rate, or blood oxygen levels. Of course, I could collapse and then get to use the hospital equipment. Or, I could simply use my best judgement and understand what my body tells me. After all, when I go for a walk or try to go out, I won’t have the monitors there, either.
This will have the treadmill, hand weights, UBE arm machine and aerobic bikes to use, with a central oxygen concentrator so that I won’t use up my tank supply.
I’ll be all buff and styling, but in a less obvious setting.
With two weeks to go, I have finally hit our main goal of a mile on the treadmill. That sounds like nothing to the average person, but trust me, it is tremendous for me. 10 weeks ago, I started at 3 minutes at a 1/MPH speed, no incline. The last visit, I did 26 minutes at 2/MPH with a 1.5% grade. That just gets me to about one mile. Wednesday, we will increase to 2.4/MPH. Trust me, the effort levels and breathing ability can be a little tough, but determination goes a long way to making it work.
I have also improved on the UBE arm machine, up to a 10 minute session, 4 minutes backwards. 12 minutes on the bike at 50 watts, and 6 lb hand weights in each arm for 8 minutes (a set of 7 exercises).
In two weeks, I actually get a diploma. A very special diploma. It means I can still accomplish something. And like every diploma, it will be a very melancholy occasion, and I might cry. These 12 weeks have been important and moving for me. I will always cherish them as much as any school graduate cherishes their own. And I will miss my therapist, Anne. It sounds like a cliché, but you always want someone to supervise you in these things, someone who will not allow you to complain. Not quite a drill sergeant, but a person who knows what you can do and accepts nothing less, and sometimes expects a little more.
We had a brief seminar after the workout. These things are always informative. However, unlike the exercise, which always has you active and moving, this is more passive. We verbally participate, but as with any class, this is to learn things that are important for the future. Unfortunately, these also serve to remind you of the cold hard fact that things will never get better.
We talked about the ways to exercise at home and after the rehab sessions are over. These exercises are to give you the best chance of slowing the progression of your disease. However, they don’t stop it, reverse it, or sprinkle it with pixie dust to make it go away. It is what it is, and they will help you to best enjoy each day as it comes.
The final ironic moment was when Anne asked me if I bowled. Well, I did (badly) and the night before, I was thinking of asking her about bowling again, since my organized sports activities are limited. Bowling works for me, and I will try to bowl soon (badly). Anne recommends that I bowl, since it is good aerobic exercise, though I may have to use a lighter ball than I am used to, and not two at a time like in the silly picture.
Finally, as I’ve mentioned previously, I have found support groups for my type of Interstitial Lung Disease (and similar ones) very hard to come by. They may be out there, but most of the support out there focuses on the more well known pulmonary issues.
So, I am going to try it on my own. To feel my way around, I have set up a FACEBOOK page, open to all, called DELAWARE VALLEY INTERSTITIAL LUNG DISEASE SUPPORT FORUM. While I would love help and advice from the local chapter of the American Lung Association, this is my beginning to reach out and help others find people to talk with and share with. It is not a medical site nor is it there to endorse treatments. It is simply to help each other through today, tomorrow, and every day going forward.
The link is Delaware Valley Interstitial Lung Disease Support Group . It is an open group. Friends and relatives are also invited to participate. The more support, the more we get out of it.
…more…lots more…to come…