It's been a while since I've posted a medical update. Things really are not going well for me right now. Even with the fluid retention, I continue to lose weight. Nearly two pounds in the past week alone. This really isn't good. Although I am losing weight, however, my protein and albumin levels (which help indicate a patient's nutritional status) are within normal limits. My PCP and I still can not figure this out. I've been a medical zebra for some time now, but even so I still baffle doctors to this day. I saw him last Wednesday and he still doesn't know what to do with me. He referred me to Dr. E, who is a General Surgeon that comes her to Jackson every week. It looks as though I will need another Endoscopy, which is a procedure that involves going down the throat with a tube with a camera attached to it. Usually they also perform biopsies, which takes a sample from the tissue in the stomach. He also wants to do an ultrasound to check my gal bladder as well as a test for a bacterial infection called H-pylori which causes ulcerations in the stomach. I have been treated for this before, but to me both of these possibilities of H-pylori and gal bladder issues are a shot in the dark. But then, I didn't go to medical school and am not a doctor. My PCP also said that when he inspected my throat, it looked like my airway was pretty narrow which means I very likely have sleep apnea. So in addition to seeing Dr. E, which I did this afternoon, he also wants me to have a sleep study. Most people with Mito require BiPAP rather than CPAP. BiPAP is basically one step away from a ventilator. CPAP is kind of like a mask that blows oxygen into your airway when you're sleeping. My guess is the muscle weakness is what contributes to this.
Anyway, my issues with eating continue. I continue to have a lot of nausea which interferes with my eating. Generally speaking, this definitely isn't a good thing. It's been going on now for several years. Which is what it is. I just don't think it's OK for me to have to be continually miserable for a number of years. But hey, again what do I know? I have been forced to live with a quality of life that is no longer acceptable to me. I am tired of being a guinea pig only for them to tell me that they have no idea what's wrong with me. They come up with all of these things that aren't right, but can never put them together. I want to scream to them that I have put them together, and they just aren't listening. Who knows if I'll ever get my point across. I know that my primary doctor believes me and that he wants to help me get the best care possible. He is just at a loss at what to do with me. For the love of Pete, I've scared the liver out of the man. I know he really cares deeply about me. So at least I have him in my corner.
During this visit with my PCP, I also had him fill out my medical history form for camp. I will be the camp nurse this year at a Summer Camp I used to attend when I was in High School. I am really looking forward to it. He made me laugh when he said, "You're telling me you feel awful all the time yet you want to go to camp?" I replied by basically saying that just because I am sick doesn't mean I have to stop my life. I can't just sit around and wait for this disease to take everything from me. I have a lot of living to do and I intend to do as much of it as possible! I think we're both kind of discouraged, but hoping that we will arrive at some answers. Time will tell.
My ultrasound is tomorrow. I am hoping to have the scope in a couple of weeks. We shall see how things go.
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