“For sure it’s cancer because I smoked” was my first thought.I feel like I am declining and have been telling my husband David for a good year that I’ve felt like I am slowly dying. Or as someone so eloquently described, ‘like my life force is dwindling’. We’ve been eating like crap, and we know better. The last 4 months I have told him it is making me feel sicker, I need healthy food. Suddenly I could sense the salt in foods and was repelled by it. I didn’t want the processed, easy food – but didn’t have the energy to buy, prepare, and cook good meals. Believe me, when you are dependent on the work of others, you don’t want to ask them to do more. I tried for buy in – but David works, does other house stuff, and has enough to do. He didn’t feel like doing it either. So I kept eating garbage.
My complaint is shortness of breath, increased heart palpitations, a hacking, choking cough at night, occasional dizziness and nausea. There have been occasions when I couldn’t even talk when walking a short distance, had to bend over, sit down, and recover before I could go on. Because of this, I made this appointment a good 6 months ago, but it took 3 months to get in, then the testing took time and I was just diagnosed with pulmonary hypertension Monday. All my symptoms are so close to my autoimmune disease (weakness, exhaustion, being out of shape from sitting), I just thought it was progressing, or I was in a flair. Except the shortness of breath. I thought I had something related to my esophagus narrowing, reflux, COPD, or lung cancer. “For sure it’s cancer because I smoked” was my first thought. Nope. At least there are treatments for that, there is remission, even a cure. I don’t even have COPD and only minimal scarring on my lungs from who knows what. Probably because I worked in an autobody shop and was around asbestos, fiberglass, construction stuff like sawdust, sanding mudding compound, sheetrock dust, gardening dust and so on. I have to find a doctor who can do a right heart catheterization for a more precise diagnosis and treat it. Unfortunately, I live in the middle of nowhere so there isn’t anyone close. I have been trying for hours a day to get an appointment in Tampa, Ocala, Jacksonville, and Orlando, but no luck so far. How’d I get it? I also have Sjogren’s Syndrome with its complications, and other autoimmune diseases like arthritis, any of which could be causing it. It can be because of undiagnosed kidney disease (which I know I don’t have because I just went to my urologist in October), blood clots in the lungs, and it can also be hereditary. Because I am not that old, I was simply told by the diagnosing pulmonologist to follow up immediately with a clinic that could perform the right heart catheterization to discover the source of the pulmonary hypertension. She gave no definition of what I had, no explanation of what to expect, no “do you know what this is or what the implications are?”, “do you understand?”, or, “do you have any questions?” Not even a referral. Just a general appointment phone number to Tampa General where, after 2 days of trying, I was told, “we don’t do that, this is the wrong number…”. And no, they didn’t have a number or suggestion of who I should be calling. What kind of doctor does this, treats someone that way? If you’re having shortness of breath in the Brooksville Florida area, I can tell you which pulmonologist NOT to see…
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Author's NoteThis is my personal journal as I navigate life. What I say is from my perspective, it is my truth. I realize the implications of this kind of honesty, it is risky. Welcome
If you have some kind of lung disease, maybe you can offer insight and resources. If you’re newly diagnosed, maybe some of what I post will resonate. About Me I turned 66 in December... Read More Categories
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