Anniversaries are odd things. Because the word is often proceeded by the word “Happy”, you tend to think of Hallmark moments and celebrations. Yet, all of these words, when absent of the qualifier “happy” can take on a lot of very different meanings.
This month is the 2nd anniversary of a hallmark moment for me that would not initially be seen in even the same town as the adjective “happy”. However, I still choose to celebrate it, because a celebration reminds us of how far we’ve come and how far we need to travel to get to the next “celebration”.
This month is also the 5th anniversary that deserves the word “happy” leading it proudly. For the sake of proceeding in a calendar fashion, I’ll visit that celebration first.
5 years ago, on a Friday the 13th in the month of April, I weighed over 420 pounds. I had been big for a long time, but when I turned 50, all of a sudden things changed. I was still outwardly the same person, but in my mind’s eye, that was no longer something I wanted to accept.
I used to give a lot of presentations and speeches concerning the video industry and other topics. As I planned for these events, I had a mental picture of myself successfully imparting my knowledge and ideas, and looking much thinner. It was a pleasant and professional vision, because I believed in my knowledge so strongly that I felt it so overwhelmed my body image that my message would still be received with great enthusiasm.
However, as I hit 50, I began to feel the “I’m getting older” thoughts elbowing their way into my life. The biggest way that they manifested themselves was in my confidence with others. No longer could I picture myself on stage, making a presentation in front of hundreds or thousands with a confident body image. I saw myself as I was, and it took a toll.
Since I had tried without success to diet, I decided that a scarily big decision had to be made. I had not been hospitalized overnight since I had my tonsils out as a child. However, I investigated having GASTRIC BYPASS SURGERY. I underwent the full procedure, simply because there is no turning back in major life decisions for me. Since then, my weight dropped as low as 250 pounds and my pants fall down much more pleasingly a lot.
This was a hard decision, and while I enthusiastically support anyone who wants to do it, I also advise them to choose a program that will get them ready for it. I had 6 months of psychological and motivational meetings to make sure that I was ready for major surgery.
So, a 5th anniversary of losing 170+ pounds is a good thing, a “happy” anniversary.
Two years ago in April, about two months after I had my second knee replacement surgery, I went to my pulmonologist because I had a terrible cough in the morning, a dry cough that made it tough to breathe and even stand up. My pulmonary doctor checked me over and took me for a walk in the hallway. I did not make it the length of the hallway before my oxygen levels dropped to very low levels.
They admitted me for some testing and then decided that a biopsy was needed. I had lung problems, but all the tests they ran were inconclusive as to just what kind. I never smoked and really didn’t drink, so they needed to see exactly what I had. I had the biopsy the following week and was diagnosed with an ILD (Interstitial Lung Disease) classified as NSIP (Non-Specific Interstitial Pneumonitis). My feelings and fears were as vague as what that diagnosis implied.
It was not a cancer, COPD, or other more easily recognized conditions. I was terrified, since this was just a beginning of exploration. This followed 8 months of highs and lows, from being laid off from my general manager position at TLA Video because the stores were being phased out, to successful double knee replacement that allowed me to bend at the knees, which you really don’t miss until you cannot do that.
If you click the PULMONARY tab in the masthead above or in the KEYWORDS, you will find more details on my disease. I don’t want to repeat them all over again to save space for the current 2nd anniversary update.
Since NSIP is progressive, you cannot cure it, you cannot reverse it, you cannot ignore it. The best you can do is to slow it down to as close to a glacial pace as you can and work to figure out how to live as relevant and useful a life as possible. Knowing that you will probably never be able to return to a work environment, the vague future needs to be rethought and that is what you now strive to do for the future.
I do a series of tests every three months in addition to checkups and doctor visits. These tests usually are two parts and I do them at the Penn Lung Center at the University of Pennsylvania. The tests are strenuous and a little daunting, if only because you know that the next phase of action is based on what these tests show has occurred to you since the last set.
They are not physically strenuous, like the pulmonary rehab exercise sessions that I do a few days a week. The first part is a six-minute walk, which is exactly what is says, except that you have monitors present to gauge your oxygen levels, pulse, heart rate, BP, and fatigue. There is no right or wrong with these tests, you simply proceed at the best pace that you can and periodically give feedback on how you are feeling.
Six minutes can seem really really really long when the walk is in a bare long narrow hospital corridor that looks like a Hitchcock trick shot. However, your progress here shows what you can expect on your own and also boost your confidence when you are out in public, walking to get here and there with your oxygen buddy.
The second set of tests is the most exhausting. These are the PFT’s or the Pulmonary Function Testing. This is not physically strenuous like exercise would be, but it involves a series of breathing tests that are designed to measure your lungs capacity, power, ability to exhale, gas exchange levels, and other things. This usually takes about 25-30 minutes or so. The exertion is purely the result of so much intense breathing in such a short time.
The test themselves are performed with a clip put on your nose so that you must breathe through your mouth. I hate the clip because the sinus pressure is then felt in my ears. It feels likes cabin pressure on an airplane. Some of the tests are perform in a chair, with a mouthpiece attached to the unit. You breathe normally and then must inhale quickly and deeply, then exhale for a few seconds, seeing how smoothly and completely you can clear your lungs.
The other part of the test is conducted in a closed booth that would have intimidated Charles Van Doren on THE $64,000 QUESTION. These tests also include the introduction of some carbon monoxide into your system for the gas exchange, as well as some very odd feeling resistance from the machine as you attempt to inhale and exhale. One of my problems is that, at times, I would cough before it was finished. Totally unavoidable, but a reason to have to repeat it again. My record is four times on the same test.
Finally, I see my specialist and we see what the plans are for the next three months.
The good news is that I am now off of the evil, nasty, weight adding steroids! HUZZAH!!! We have been decreasing them over the last six months. At one point, I had put 45 pounds back on and got really puffy from the prednisone, topping out at 298. However, as I adjusted my diet and got off the steroids, I am now down to 268 and hopefully getting even lighter. The only concern is that I have to monitor the weight loss, because a rapid weight loss could be a sign of disease progression.
I also now get to see the results of my PFT’s, even though I may not really understand some of the medical terms. The tests see a PREDICTIVE level for each test based on my height, age, and weight if I was healthy. This is compared to the ACTUAL , which is what it says, the actual ability of my lungs. In percentages, these results show around a 50% loss of capacity and ability in my lungs, mostly from my left lung. This has been steady for almost a year, so we have this mother tamed for now.
However, this will someday not be the case and when that starts to happen, I will look back on this anniversary to celebrate what I have accomplished so far, and happily look to our next step.
The great thing about anniversaries is how they are numbered for each passing year. My intention is to be numbering these “anniversaries” into a very high and very happy double digit future.