Marlene

VentMedic: Thank you very, VERY much for the links you provided. I will definitely check them out! I realize this is a disease that requires treatment by a professional, but my options are very limited to me. As I wrote, in the past, especially once when my pulse ox dipped to 67% (as I was challenging the nurse to a walk down the hall to "prove" to her that all I needed was a little exercise and NOT home oxygen), although I was tired, I didn't sense any feeling of urgency or problem when breathing. When I had one of my "episodes" (as I'm having now with unusually thick secretions, frequent gagging sensation and just feeling downright terrible), my pulse ox has been NORMAL! Unfortunately, my options are very limited, and I cannot afford to see any more physicians or purchase any new medications. Although I realize the disease is kind of serious, I AM 54 years old, and when I think of the numbers of babies, children and young adults who have had much more serious cases than I and have died, I have no choice but to feel thankful that I've lived this long. I feel I've become somewhat of an expert on pancreatitis over the last two years through my experiences and my research into the disease. (In fact, it wouldn't surprise me to find I've truly got "groove pancreatitis," because of my past CT scans and duodenal involvement with wall thickening.) I can relate so well to the symptoms of the disease, which have included problems with breathing, as well. However, I've just stuck my toe into this cystic fibrosis ocean, and my understanding of this disease has been difficult, especially since my symptoms don't seem to correspond with what I've read about the disease. You probably already knew this, but I was very surprised to discover that the original name for cystic fibrosis was "cystic fibrosis of the pancreas." During my final "hospital worthy" attack of pancreatitis in 2007, when the ambulance arrived, my daughter told the EMT (they were sort of "buddies" by this time because of my illness and repeated need for their servies) that I had diagnosed with cystic fibrosis, and he immediately said, "So THAT'S why she's been getting these attacks of pancreatitis." My daughter was very impressed with this EMT's knowledge (as was I when she relayed the story to me), and I regret the GI and pulmonary "specialists" weren't as smart as this EMT because it took them two years to "connect the dots." In any case, I again want to thank you for the links you provided me. It's exactly the kind of information I was looking for, and I appreciate it very much. I hope you have a wonderful day. Marlene

Hi, everyone. I'm brand new here and probably way out of my league, since you are all professionals, and the closest I can come to that is the fact that I work as a medical transcriptionist. (I know -- not close at ALL!) I'm 54 years old and have been suffering from pancreatitis for almost two years now, having been hospitalized a total of six times. Three months ago, I was diagnosed with cystic fibrosis during one of my hospitalizations, after diagnostic DNA testing was done without my knowledge or consent. Although this disease manifested itself primarily as pancreatitis, I've always had breathing problems associated with it (at one point having a pulse ox of 67%) and always required oxygen and/or breathing treatments during each hospitalization. The problem for me with this is that I really wasn't aware of my difficulties. I didn't sense any problem with my breathing and didn't understand what the fuss was about. I'm trying my best to maintain without medical professionals because I simply don't have the money to see physicians for treatment any more. I'm interested in purchasing one of those little finger pulse ox machines so I can monitor it myself on a regular basis to try to get a handle on when/if I have symptoms. (For example, I've become very short of breath lately and am experiencing some sort of vertigo or dizziness. For the last few days, I've especially been getting an "elevator" feeling, regardless of whether I'm sitting, standing or lying down. It seems to be made worse when I move my eyes to look at something. I've seen these pulse ox machines on the web, running anywhere from $50-some dollars, way up to over $1,000. Again, due to my lack of resources, I'd have to purchase the cheapest one, and I was wondering if any of you have experience with these machines and if I could rely on one of these to be accurate. I'm not asking for any medical advice here; I'm just trying to figure out this diagnosis of cystic fibrosis and how my body reacts to it. For example, my final hospitalization of 2007 was my best "lung" hospitalization ever, and I required very little, if any, oxygen; however, I developed a very bad "cold" with incredibly thick secretions that I never experienced before (more than likely caused by the cystic fibrosis); however, my pulse ox readings were fine. So it seems when I feel okay, my readings are low, but when I feel miserable, they're okay! In any event, I'm just curious as to whether you can offer any suggestions with regard to a very reasonably-priced finger pulse ox device. Thanks in advance for any help you can offer.