M
madmax33
Guest
Hi Everyone. Been reading and watching some post on here for some time. I have suspected CF for about 10 yrs now during my research and looking for answers to why I have been so ill. I am chronic now with many health problems and not doing well. I have had Many allergies, Chronic Asthma, Chronic Broncitus, IBS, Gastritis, IBD, Pancreatis, Spasm tic colon, colitis. (this have been the many diagnosis over the yrs. In 2010 I lost weight and went down to 80 lbs could not keep any thing in me. Had malnusorption disorder. the most frustrating thing is, to be so ill I am being so ignored by the medical community and being treated as if nothing is wrong with me, even with such chronic life threating conditions. (I also have never used any illegal drugs and am not a drinker) I found a endco out of this area and he did a bile duc surgery. In my search and obtaining my medical records I could see where I was rx with Malnusorption disorder. I have pancreatis insufficiency, and through this bile duc surgery ended up with prancritis and now take enzymes. I also have a fatty liver. I have been on so many antibiotics for sinus issues and the bronchitis which seems I have most of the time. I have very salty tasting sweat and just thought that was the norm. I also have a pace maker, Hashimotos disease. Migraines, Poly Neuropathy, Osteoporois, at age 45!. arthritis, Fibro, and just so many symptoms . Cant even think of all I have been diagnosed with as it is all so over whelming as I seem to get no where!! Treated as if this is normal and been told things like it is part of the aging process since I was in my 40s. I do have chronic pain also which is very debilitating due to my back and neck. Diagnosed with fibro also in late 90s. Ok now get to the current. I finally got a new Doc to order a sweat test for me. He thought I was crazy and said it is impossible. This is what I was told I need to get done First before I can get to a CF center. This was a Sweat Screen test? I tried to research the difference but understand this is what you have done and if a positive shows up then you get a referral. SO I did it, and my test came out positive with a Result of 90. . I also had a Pulmonary Dr do a bronoscopy back in 2011 and he said it was normal, (this was the yr of 7 antibiotics and a infection No antibiotic would touch. This has always bothered me since as he stated that my lungs where covered in a white sicky mucus and He had to clean out my trachea quite a bit as I had a lot of secretions. I pushed for this test and recall a Dr saying to him three times, are you going to biopsy that? He said no. Also he did a wash first for any culture he took? This Dr was watching nodules I had on my lungs. Did not seem to be much concerned about any thing else and said all I had was chronic asthma. Do now with the Positive sweat I have had to take this into my hands to get to the CF center. The Dr I got to order this and only have seen him twice, (he does not have most of my medical diagnoses and does not know my background) I am frustrated as trying to get help, it does not help when you are so ill and even with positive test, Dr just seem HELL BENT Where I live on ignoring you and treating you as if it is all in your head. Anyways It took a month to get to the CF Center. I did the follow up my self, the Dr never called me, his nurse did and she said he does not think you have CF. So yesterday I went to the CF center. This gets more confusing and why I am looking for some advice and help at this point. The Dr was very nice, seems very geniniune and wanted to help. He asked me what brought me there and why I thought I could have CF. So I proceeded to tell him. He brought up also, the average life of CF is 36. Also was telling me if would be very unlikely for my age!!! So this is what I do not understand at all. I obviously have other ailments. I have gone to the hosp 5 times since Dec of 2013 with severe chest pains, Left and right sided. Also had a very bad VP scan. Had a high d-dimmer and they suspected PE but was and has been dismissed. I finally was diagnosed with a Ct of Ammonia and pleurisy. But a other thing obtaining my records, I have two partial collapsed lungs and a plural effusion. No one told me. Looking back at records in feb I also had the two partial collapsed lungs. Also in 2008 My records show a plural effusion. I am so confused and lost as it could be many things. So again this is why I am writing here, for help and looking for some advice. I do not know what to think with the way I have been so dismissed where I live by these drs, but was really thrown off as to why the CF center Dr, also seemed to think it was almost unheard of at my age?? I am scheduled for a Sweat test there. this also concerns me, even if it is positive and I am told it is because of something else going on in my lungs? Or if it is neg, and the ball is dropped from there. I see where some people are neg sweat test, but test positive with the mutations. Also since they are now finding out so much about later in life CF, Being so ill and yes with all these others Problems, I feel like at my age, how would without test and following someone if they have CF , could find out if this is the culprit and the cause of many other health issues? None of the things I have been diagnosed with lately have seemed to make any sense at all. Does not run in my family, I am very chronic, mostly bed ridden and SOB so bad I feel like a very ill 100 yr old person. I have been this chronic since 2010 and have really declined this past yr. This Cf Doctor said he is going to do everything to help me. He will refer me out at that center if it is not CF. He also seems to be thinking cancer, and I did say I feel that bad it would not surprise me, but I have been so chronic for so long you think I would be dead. he agreed. I pray that is not what is wrong, and just want answers. I also have a Low Diffusion Capacity, which I have had for yrs . It is like 56%. My FEV seems to be good. I also asked a Dr of the ABG test, and that has 4 of them off, one was the PCO2 was low. So when I am told this is good, it is hard to understand when you are feeling like you cant breath! I also do not feel comfortable about these recent chest pains, with the VP test and still in the back of my head thinking of a Clotting disorder. this seems to be something I cannot get any Dr here to follow up on at all. My sister almost died this yr and was flight Helicoptered three times with Clots. She had a mesh in her leg and was cut open from the neck down the chest. My mother also had clots. This is very scary. Sorry for the very long post, I am hoping someone can jump in and give me there input on the CF end and where to go from here. My prayers to all of you.