Pulmonary: I Got A Phone Call !!!

I got a phone call!

OK, before all of the grammar police go nuts, I know that sentence is bad grammar. PFFFT!

My excitement trumps the time honored rules of writing a proper sentence. So, where was i? Oh, yeah…

I got a phone call!

Let me back track a little bit. As you know from my previous “PULMONARY” postings, I have been participating in the Pulmonary Rehab classes at Lankenau Hospital since early August. Three days a week, I’ve attempted to raise my tolerance and ability level for my breathing functions. Again, my ILD is not reversible, the damage is done, and all efforts from here on out are to slow the progression to a crawl while allowing me to live as full and active a life as I possibly can.

The problem has always been that , by the good graces of the fine health insurance system, these classes carry an expiration date. I was approved for 36 classes, three a week, which is actually on the high side. Of course, this is lifetime, which is very ridiculous and ripe for another blog post someday.

These have been wonderful classes, for my mental health as well as my physical. For 90 to 120 minutes a day, three days a week, I was not allowed to pull a “whoa is me”. I had to strive, I had to try, I had to accomplish, and I had to participate. Anne and Francine, the rehab techs, were there to make sure that I accomplished what I was capable of, not what I was too scared to attempt.

In addition, my workout mate, Felice, kept me laughing and trying even harder. That was the “mental” aspect. The social atmosphere, the cordial nature, the shared and building relationships over these 36 visits were almost like working again, something I so sorely miss. In other words, for 90 minutes, I lived how I wanted, not how a condition forced me to.

I’ll get back to the phone call in a few paragraphs.

The sessions were structured around four basic sets of exercises each day, with endurance and limits extended when possible. In the end, I went from 3 minutes at 1/MPH on the treadmill, to 30 minutes at 2.2/MPH with a 2% grade. I went from 3 minutes of 2 lbs hand weights to 10 minutes of 6 lb hand weights. I progressed from 3 minutes at 10 watts to 12 minutes at 50 watts on the stationary bike.

In all, every area had improved, but most of all, the opportunity to resume some semblance of my old normal life existed again, and that was what I’ve missed.

But all good things have to come to an end, according to the word of Aetna, and after 36 successful sessions, I graduated!

Of course, I had to say good bye to these sessions, and did so with a really sad heart. For the first time in over 2 years, I was truly happy again. While it cured nothing, for a few weeks, I moved forward instead of backwards. My next step is moving to a Pulmonary Maintenance Program at Bryn Mawr Hospital. Essentially, this is the self-guided version of what I just accomplished, but minus the constant monitoring of my vitals and body responses. In addition, while there are good people there, I am not their only focus, so they are there to answer questions when I have them, unlike at the Lankenau rehab when Ann and Francine were there to anticipate my questions and guide me as much as I needed it.

In essence, it is a gym setting, and I can check my blood oxygen and heart rate at the end of each set of exercises, but I no longer am wired up. Oxygen is provided by a concentrator instead of a tank or in-wall hook up. The advantage is that the cost is much less than the rehab, so my meager financials are able to handle it. Also, the sessions are 2 days a week and are not for a scheduled time, though I will continue to go early in the morning, since that gets my day started.

Sometimes, there are others there, but other times, I am alone. There is a TV that only seems to get silly judge shows or FoxNews, so I zone it out. Because of the lack of consistency of who is there when, the other thing it is missing is that feeling of a shared workplace, with co-exercisers to talk and share with week in and week out. That I miss the most.

I started this program on Tues 11/15, but before I went to my first session…

I got a phone call!

It was Anne, Francine, and Felice, my new friends from Lankenau, just calling to see how I was. It was wonderful! I don’t get as many calls anymore because my circle of friends has shrunk and is missing those who I used to see everyday at work or who I used to talk with throughout the year about the video industry.

But, I got that phone call, and it put a big exclamation point on all that I have written about the rehab program. This was something special that I just accomplished, and I did it with a shared community that was there to help, advise, laugh, and share. I may never be at that level again, but I did this and my new friends were there for me again.

I am now excited for the next phone call!

These are the treadmills that I used. I was on the left.

These are the UBE arm exercises. I ruled these.

This is the stationary bike I rode. Went very fast in place.

These were just some of my monitors. Wire me up!

My weights and the exercise guide. I did not color it in, though I wanted to.

Pulmonary Rehab 9/1/11: Earthquakes, Hurricanes, And Steps To Climb

Note: At the end of this post are links to previous posts about my lung disease. I’ll keep these links at the end of each subsequent post or figure out how to add a Table Of Contents.

What a week, what a week.

Maybe you’ve heard? My first earthquake, and you knew it was one. We get to joke about it, sounding like a huge truck coming up the street and a flower pot ringing out but let’s face it, we are glad it wasn’t worse (though the speed of the local stations to develop over-the-top graphics and music for it was amazing).

Then came Hurricane Irene and another chance to Twitter and joke about it, but only because the worst we had around my neighborhood was a 14 hour power outage. Irene caused the most damage just when you started to think that the whole storm was a big overreaction. If you don’t believe me, just look north to Vermont.

Of course, all the blowing and shaking coincides with some updates on my pulmonary rehab and my lung disease. While nothing out of the ordinary occurred during it, much good stuff actually happened.

As of now, I am completing my 4th week of pulmonary rehab. It is starting to approach what I hoped it would accomplish. The odd thing might be that while a physical goal was part of the plan, the more abstract goal was what I really wanted the most: to be able to get some real life feel for what my limitations and abilities would be going forward.

I wanted my confidence back.

One of my biggest fears and concerns revolved around how this would affect what I used to do and experience. While I was not a world traveler by any means, I was an active participant in my professional life and a good fun friend in my personal life. I knew my stuff, I am not bashful to say. I shared that knowledge and wanted more. I shared my experiences and wanted new ones. I shared my friendship and wanted even stronger ones.

Once I was laid off and then diagnosed with NSIP, those all seemed to move far away from me, on that very uppermost shelf that you never think you can reach. The chance to experience these again seemed to no longer be an option. Confidence, focus, desire, ambition, and ability all hazed over out of the lack of understanding of exactly where I am and where I go next.

The rehab was in my sights because , while I did not think I would get every answer every written, I did hope that it would point me in the right direction. The rehab is starting to do that.

Take the treadmill. When I started, I did 3 minutes at 1 mile per hour, with my oxygen level at 4 BPS. My blood oxygen level would dip low to 87-88. Three and a half weeks later. I am at 15 minutes at 1.6 miles an hour, oxygen level at 6 BPS. My blood oxygen is 91-92 % . One big difference: my therapist has turned the monitors away from my sight. I therefore have to depend on how I feel instead of how the monitors tell me I feel. That knowledge will help me immensely.

Also helping me is that the gym has Good Morning America on for the 8 AM hour, so I get all the annoying faux-celebrity news and make up tips that even a clown would laugh at, instead of the newsworthy 7 AM sgement. So maybe I am trying to walk away from the TV.

Next up the what I’ve called the “fantasy ice cream making machine”, which I’ve learned is a UBE (Upper Body Ergometer ). This is very similar to when I was a wee lad and would turn my tricycle upside down and spin the big wheel with my hands. There is much more resistance now, except for when I would turn my brothers tricycle upside down. Then all hell would break loose.

I’ve increased from 5 to 9 minutes with increased resistance as well. In this room, there are only the walls and some inspirational posters that are definitely less annoying than HANG IN THERE KITTY posters. There are no monitors, all my breathing and body effort are measured on a self-scoring numbered scale. This causes the least feeling of tiredness and shortness of breath and the most instances of daydreaming since I’ve memorized those posters and every inch of the wall.

The exercise bike is back in the main room and therefore back in view of Good Morning America. Josh Elliot is riding a camel, some woman has 15,000 pairs of shoes and a reporter tells me that dollar stores are cheap. News you can use.

I’ve gone from 5 minutes to 9 minutes on the bike and increased wattage resistance. There is much more visual stimuli in main room but I still manage to stay away from looking at monitors.

The hand weights have gone from 3-4lbs per arm and will be increased to 5 lbs Friday. We have gone from 5 to 8 minutes and I’ve gotten better at not looking like a cartoon drawing while following the cartoon instructions.

Wednesday, we attacked a flight of stairs. Yes, that is a fear, a barrier, and a goal. While I went up one flight and back down again, I was able to do four steps at a time with normal strides before feeling a bit winded. Since this was the first time, my old friend apprehension came back to visit, the fear of what I could not do before I tried to do it.

I did learn that the pursed lips breathing is much more effective than the habitual panting that I have done when out of breath. Pursed lips bring the blood oxygen level up more quickly. Again, nothing earthquaking, or shaking, but a hoop that needed to be stepped through.

One of the great fears and sadness for me has been the thought that I am not only stagnant on what I can do physically, but that I am also stagnant on what I can earn and monetarily help with. I have no desire to be a burden but I do have a desire to contribute on my own when needed. Having the disability check means that there is income every month. Having the ability to cover the expenses can be tough.

I will be meeting with a local foundation tomorrow to see about some help with the medical expenses. I can use the help and support and hope that this is also the step that allows me to find a way to contribute and organize my finances more effectively.

I have a few really great angels in my life right now and right now I can use one more.

My ultimate goal is to be an angel in return when needed. Clarence, I can use some wings.

More to come…


Pulmonary Rehab 8/19/11: When We Last Left Our Hero…

Pulmonary Rehab 8/17/11: Adrian Is Doing Well. Give Him A Sticker.

Birthday Wishes And Pulmonary Dreams 8/11/11

Pulmonary Rehab Tales 8/10/11

Pulmonary Rehab 101: 1 Of the Future

Tomorrow Starts The Next Phase: Pulmonary Rehab And Education

Expecting Expectation, Getting Ramblings

Those Three Words

Pulmonary Rehab 8/17/11: Adrian Is Doing Well. Give Him A Sticker.

Note: At the end of this post are links to previous posts about my lung disease. I’ll keep these links at the end of each subsequent post, or figure out how to add a Table Of Contents.

Those were the words that started the rehab specialists report on me today. A gold star moment indeed.

Actually, this was pretty exciting, since coping with the lung disease up until now has felt kind of like walking in the tilted room in the old pirates ship on Hunt’s Pier in Wildwood. Because of the knowledge that I cannot get better from this, the natural human tendency is to assume you will get worse. Defying that human expectation, you try to stay stable and maximize that stability for what now constitutes your everyday life.

Three sessions have gone by since I last wrote about the rehab. Each day has had its moments, and each day has had its discoveries.

I now do a set routine of warm-ups, followed by a treadmill, the phantom ice cream machine arm spinner, an exercycle, hand weights, and cool down exercise. Nothing more exotic than that and nothing expected to be more exotic.

The warm-ups are fairly straightforward, performed without weights, but many are variations on weighted exercise. These go fairly quickly and then we get a blood pressure and a pulseox. My BP has tended a little bit to the high side, but not dangerously so. The pulseox levels have been acceptable after each set of activites, generally in the 91-92 range (my standard at rest without oxygen is 95-97). Note that these exercises are done with an oxygen tank at my side.

I also have the previously mentioned pocket monitor. This still includs putting the sticky contacts on my hairy chest. I now know exactly where my clavicle is because the first couple of times that I put the upper contacts on, I placed them too low and had to rip hair out by the follicles to move them. Ouchies Wouchies.

The remote also seems to want to pick up my breathing more than it is supposed to. My readings tend to look like my Cialis is working for much longer than four hours. No, I do not take Cialis. Just a metaphor, like my non-existent sex life. We have to tape the wires just so, like the old rabbit ears on an old TV set.

Steppie the Treadmill (yeah, I named it. Sue me.) gets me up to speed. The first few days, I was only doing 3 minutes at 1.0 to 1.2 miles. I’ve not fallen yet. Monday, we increased to 4 minutes and 1.4 miles. Today, 5 minutes and 1.4 miles. These may seem to be minor fluctuations, but to me, they are signs of progress, signs that are few and far between for me.

The only problem that I have had is that I tend to grip the handles much too tight, making it impossible for the pulseox to get a good reading. My grip is tighter than a jar lid. In addition, this causes other readings to be a bit off. I finally found a different way to balance and grip and solved that.

Then, my rehab specialist noticed that I was watching and reacting to the numbers on the readout screen instead of simply reacting to my own stress level and breathing capacity. This was solved through a very complex thought process. She turned the readout away from me. Problem solved. Sometimes life really IS simple.

Next to the ice cream machine arm workout, which I am king of. Today, she set the tension higher and I went up to 7 minutes. I was cranking out the frozen custard like Mister Softee on a sugar high. The imaginary kids eating the ice cream were all happy. Now if I could just get their imaginary currency to spend like real money.

Then comes the stationary bike. No stories here, just a bike ride not quite to the level of the Manayunk Wall, but I put my results up against anyone in that race. Will NOT wear spandex bike shorts, however. Nope.

Finally, the weights. These are increased from 3 to 4 pounds. Such a little increase and in my past life would have been baby weights. In this new life, they might as well have been railroad ties strapped to my arms. However, I did all the exercises like the little cartoons told me too. This time, we increased from 5 to 8 minutes. Without telling me. Nothing. This forced me to forget about pacing and to simply do. The option not to finish was never there. I made it, and felt good about it.

I did the cool downs and got a final BP. I broke the machine. It shut down. Or I had no BP. In any case, I still was able to walk out of there, so it’s all good.

Today, for the education class, we had ½ a VHS tape of Pulmonary Nutrition with models who looked like a VH1 “I Love The ‘80’s” Casting Call. We watched half because the rehab specialist was not quite ready to start our main topic: SEX. Seems there is no VHS tape for that. Reminder to myself: Let the hospital know where they can find the sex VHS tapes. At least the session would be well-attended.

She passed out some instruction pages of how to have sex when you have breathing problems. She accompanied this with some remoarks. We all glanced and put them away for later. In my case, probably much later.

We talked about sleep disorders and sleep apnea, which exists in many more people than you might think. It would pay you to ask you doctor about a sleep study, especially if you are overly tired during the day or have recently gained or lost weight. We also talked about drug interactions, which is something I am very afraid of.

So, I made five rehab sessions, and at the end of this one came a beautiful set of words. “ADRIAN IS DOING WELL”. Though the bar may be set low, the elation is sky high when I hear them. It means that something is being accomplished. Something for myself. Finally.


Birthday Wishes And Pulmonary Dreams 8/11/11

Pulmonary Rehab Tales 8/10/11

Pulmonary Rehab 101: 1 Of the Future

Tomorrow Starts The Next Phase: Pulmonary Rehab And Education

Expecting Expectation, Getting Ramblings

Those Three Words