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During the years after my diagnosis, I wore out three treadmills. In the online support groups such as EFFORTS, I became known as one of those exercise nuts who was constantly preaching the value of keeping our bodies in good shape to counteract the weakness in our lungs.
Mary made it known that she was not really done with me yet, and encouraged my seeming addiction to exercise. We both knew that, as my COPD progressed, she would be required to take over more and more of the activities that we had shared for so many years. I remember that there were so many things that I wanted to do to help her, but my limited breathing simply would not allow me to do so.
As I have pointed out at every available opportunity, I consider Mary to be among the world’s best caregivers! She has a 21-year history as a Hospice volunteer, and has worked with many patients who were fighting lung disease. Caregiving is an incredibly difficult task, a look down a tunnel with no light at the end. It is hard, it can be thankless, and it is an incredible expression of love. Without the years of exhausting, constant work and vigilance on her part, I might well not be here now.
As most of you know, I had the incredible good fortune to receive a double lung transplant five and a half years ago. Mary was holding my hand as they rolled my gurney toward the operating room, and she was holding my hand when I regained consciousness. I suspect that they pried her loose during the operation, but as far as I was concerned she was there with me the whole time.
Since the transplant, I have kept my exercise habits in an effort to stay in good enough shape to deserve the quality of life that the gift of new lungs has given me. Some have questioned me about me continuing fanaticism toward exercise, given that I have lungs that are now in their late thirties. One of my excuses has always been that I want to stay in good shape in order to help Mary, to become her caregiver, should that need ever arise.
Well, here we are. Mary’s Mom suffered from Macular Degeneration in her later years, finally reaching the stage of almost total blindness. “Macular”, as it is called, is hereditary. We have been watching for it, checking Mary’s eyes for years. About 6 years ago, her left eye developed “wet” macular. At about the same time, her right eye developed “dry” macular, and her vision was affected. She retained the ability to do most things, but she experienced some distortion in her vision.
Then, a couple of months ago, her right eye changed from dry to wet macular, and she sustained a tear in the epithelial of the retina, severely distorting her vision in that eye. She can still read, with effort, television is a bit distorted, and she does not feel safe driving. We are obviously working with a retina specialist, who is giving her shots in both of her eyes to control the wet macular. (Not her favorite thing.)
Being us, we are looking forward to improvements in both eyes and the recovery of much of her former sight. The doctor is not quite so optimistic, but he doesn’t know with whom he is dealing….
So, our roles have changed again. Mary is able to function perfectly well, with some notable limitations. I am healthy and strong enough to take over many of the duties required to keep us going, and we are both exercising. We are, for the foreseeable future, in an excellent position.
I have told Wendy, our daughter, that my intent is to live long enough to become a true burden to her, and her standard reply is, “Bring it on!” I have to be nice to her because she might well end up taking care of one or both of us, but not for a while.
Not for a while….
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It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.