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Mystery illness - seeking opinions
Hi! I guess I am just looking for opinions on whether or not I should seek CF testing. I'm sorry this is so long! Thank you in advance to anyone who can offer some advice. I've been "sick" on and off for a few years now. As a child I had strep throat A LOT until my tonsils were removed. I was also suspected to have asthma. I don't know how it was decided I didn't. I cleared my throat absolutely constantly but to my knowledge this was not investigated. As a preteen I had a heart murmur that apparently went away and had a couple fainting episodes and was diagnosed with syncope. I was pretty healthy through my t...
Source: Cystic Fibrosis Adults Forum - July 25, 2015 Category: Respiratory Medicine Authors: Rtn87 Tags: Adults Source Type: forums
Recently diagnosed at 31
Hi! My name is Krystin, I'm 31 with two kids and here's my story. December 2012, I was at the beach enjoying myself in a hot tub. Two days later, I started coughing. Productive coughing. I assumed it was bronchitis and went along with my life for 6 weeks assuming it would go away on its own and not wanting unnecessary antibiotics. I broke a rib coughing, so it forced me to the doctor. Diagnosed with bacterial bronchitis and sent home with antibiotics. Nothing. Called the doctor telling them the cough was still present. Stronger antibiotics. Nothing. New doctor, new visit and given 2 antibiotic injections in my booty, stero...
Source: Cystic Fibrosis Newly Diagnosed Forum - July 13, 2015 Category: Respiratory Medicine Authors: Krysm3 Tags: Newly Diagnosed Source Type: forums
Possible CF (input please)
Hello all. I am a 20 year old male, and was recently tested via sweat test for CF. I received the call five days ago that I did not have CF due to the results, but I am not fully confident (as online research has led me to discover that in some, albeit very few, cases, the sweat test may produce normal results despite the patient having CF). Here's why I am not fully confident: 1) I was diagnosed with asthma at a young age--however, this asthma is so mild that it has a negligible impact on my life as of now. I need to take two puffs of my albuterol inhaler MAYBE once a week, if not less than that. I do not usually need i...
Source: Cystic Fibrosis Newly Diagnosed Forum - June 11, 2015 Category: Respiratory Medicine Authors: alex852 Tags: Newly Diagnosed Source Type: forums
Hi everyone my story is a bit complicated. Im 23 years old and when I was 18 I was given a genetic test for CF and it came back negative the reason my Gastro dr ordered it was because of acid reflux, elevated lipase levels and sludge in my gallbladder which since then has been removed. Just recently my new gastro dr told me about the possibility of CF. I only have one person on my dads side that has CF no one on my moms. I don't have the typical CF symptoms just occasional unexplained shortness of breath, frequent respiratory infections severe acid reflux and persistent low vitamin d levels. My gastro dr said that I could ...
Source: Cystic Fibrosis Newly Diagnosed Forum - May 29, 2015 Category: Respiratory Medicine Authors: Jessica Gomez Tags: Newly Diagnosed Source Type: forums
26, just diagnosed, advice/input/kind words welcome.
Hey guys, whats up? Here's my story.... For the past 6 months I've been having bad stomach problems, hard time keeping food or liquids down, throwing up after meals because I was too full, etc. I ended up losing around 40 lbs and just feeling not myself. I went to numerous doctors, got cat scans, and enoscopy, etc over the summer and basically they just gave me ppi meds for acid reflux and shrugged their shoulders. After months of the same story, I went to Robert Wood Johnson Hospital in New Brunswick. NJ and was emitted. I was there for about ten days, mostly running the same tests, but the doctors actually believed me ...
Source: Cystic Fibrosis Newly Diagnosed Forum - February 16, 2015 Category: Respiratory Medicine Authors: Mike Brown Tags: Newly Diagnosed Source Type: forums
My son is almost 3 and was found to have the mutant R117H 7t/9t in his newborn screen (kansas does the most common 40). We did a sweat test at 3-4wks old and it was negative. Since then we have struggled acid reflux as a baby and ongoing diarrhea. And frequently episodes of croup as well as him throwing up mucus. He snores as an infant. I do feel like he tastes salty now. At least compared to his sister's. After reading up on this particular mutation I wasn't sure if it would be worth pushing for full DNA testing to see if he has a rarer gene. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - February 2, 2015 Category: Respiratory Medicine Authors: aphillips Tags: Families Source Type: forums
What else could go wrong
Hello my fellow cfers. Im just going to jump right in, I'm 25 and I just finished my evaluation for transplant and found out I will be getting listed for both lung and liver. However, when I got a ct scan of my abdomen they saw some of the nodules on my liver do something called "washing out" which they said could be a sign of cancer. So about a week ago I had an MRI of my liver done and it is a small cancer. They said this wouldn't stop me from being listed but they want me to have a procedure to, the doctor I talked to, said "burn away the tumor". Im not really scared about the cancer part because I k...
Source: Cystic Fibrosis Transplants Forum - August 8, 2013 Category: Respiratory Medicine Authors: Kyrav Tags: Transplants Source Type: forums
24 hour ph study
Hi everyone. As of right now I only need one more test before my lung and liver team present my case to the transplant committee. It's the ph study, you know, the one where they shove a tube up your nose and down your throat to measure your acid reflux. Anyway, I tried it outpatient last week and couldn't stand it. I was in so much pain and throwing up every time I coughed so I ended up taking it out 7 hours in. They want me to try it again on Monday, I'm in the hospital for an exacerbation right now so they say they can give me better stuff to help my throat from being so sore and to calm down my gag reflex. I was just ...
Source: Cystic Fibrosis Transplants Forum - May 30, 2013 Category: Respiratory Medicine Authors: Kyrav Tags: Transplants Source Type: forums