strange question about chairs for vest users
My adult son uses an airway clearance vest 2 times a day. He is pancreatic sufficient and not on the skinny side. He needs to sit at a desk while he does the vest so he can do nebs (and look at a computer screen to ease boredom) at the same time. Anyway, with the oscillation of the vest, he has so far broken 4-5 different chairs. Some break while he is on the chair, and some break several days or months later. Several of them were Danish modern quality chairs made of teak from a high end furniture store. Several of them were less expensive chairs with caning. It seems that any chair with joints that can come apart ...
Source: Cystic Fibrosis Adults Forum - September 11, 2015 Category: Respiratory Medicine Authors: fel Tags: Adults Source Type: forums
ABPA and Xolair
Hi folks,
Does anyone have issues with Allergic bronchopulmonary aspergillosis (ABPA) ? Do you do anything for it, any luck with treatment?
I just got off Prednisone after being on it for the past 20 months. At the start of 2014 I had a CF-related decline in PFT that I was unable to really bounce back from after 3 weeks of IV antibiotics. They noticed my IGE level was over 6000 (normal is around 100 I believe), and had been for several months. They tried prednisone and voriconizole (one of the only anti-fungal medications, I've been told) but my IGE only dropped to around 1500-1000.
Next the docs sent me over to alle...
Source: Cystic Fibrosis Adults Forum - August 8, 2015 Category: Respiratory Medicine Authors: Dank 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
No enzymes?
What happens with a person that has CF and does not take their enzymes when they eat? Besides stomach aches, do they have really oily loose stools??? does it happen every time some one forgets to take their enzymes, or just some of the time??? Is stomach cramping common with this also? What if the doctors diagnose with "malabsorption" does that necessarily mean pancreatic insufficient ?? (Source: Cystic Fibrosis Nutrition Forum)
Source: Cystic Fibrosis Nutrition Forum - June 20, 2015 Category: Nutrition Authors: princesskinzy Tags: Nutrition Source Type: forums
Hi All. Throwing this out there to see if anyone can help. Still no CF diagnoise.
Hi Everyone. Well, I had a ambry Pancreatitis Genetic panel done. Any one else, with pancritis problems, Cf etc, which know of theses mutations. G576A, (likely pathogenic) And R668C. (Variant of unknown Significance) Got as far as a CRMS Diagnose. Told neither of these are CF causing. I don't get this as I am still in limbo, The two high sweat test> 84, and 90. To make this short as I always write a book here, I do have good FVC. Low DLCO. (which I think is heart related) Chronic Asthma, Chronic Sinusitis, Allergies, Chronic Bronchitis, Failure to thrive, malnusorption disorder (most all my life) Chronic Pancri...
Source: Cystic Fibrosis DNA and Mutations Forum - May 30, 2015 Category: Respiratory Medicine Authors: madmax33 Tags: DNA and Mutations Source Type: forums
question about insulin
Hi
i was just a bit stuck on these two questions and would be grateful if anyone could help.
Which peritoneum-covered structure lies immediately posterosuperior to the normal
spleen? is it the diaphragm or kidney?
Describe the anatomical route taken by insulin released from the pancreas. Which
tissue removes the greatest amount of insulin from the blood?
Thanks a lot (Source: New Media Medicine)
Source: New Media Medicine - May 30, 2015 Category: Universities & Medical Training Authors: n9acimasiz Tags: Glasgow Medical School Source Type: forums
2183aa > G or S945L
Hi Folks!
I'm trying to pull some data but Google isn't being incredibly helpful.... there really isn't a place to pull this kind of data..
I'd like to know what symptoms are related to which genes... and so I think this may work out well. I think there are at least a few people on these forums with these genes.
This is what I'd like to know:
Which genes do you have? (please only reply if you have either 2183aa->G or S945L, thank you!)
What are your major CF-related symptoms (lungs,sinuses,pancreas,other)?
What medications work best for you to manage health? (pulmozyme, etc)
Whats your PFT%? (Just the last result is...
Source: Cystic Fibrosis DNA and Mutations Forum - May 19, 2015 Category: Respiratory Medicine Authors: Dank Tags: DNA and Mutations Source Type: forums
3 Year Old Just Diagnosed - Help!
My son was diagnosed at birth last year. His three year old sister was recently tested and has CF as well.
She has been a picky eater from birth. She is not underweight and her vitamin levels are all good, though she is severely pancreatic insufficient. She refuses to take her enzymes (the answer to everything is "no" these days) and she doesn't eat anything we can hide them in (mostly hard foods or dairy products) and she chews everything.
She is, thankfully, willing to do her breathing treatments, but it's killing me that I can't get her to take her enzymes.
Does anyone have any advice? Our medical team s...
Source: Cystic Fibrosis Newly Diagnosed Forum - April 29, 2015 Category: Respiratory Medicine Authors: Kirio Tags: Newly Diagnosed Source Type: forums
Looking for Help/Clarification on CF
Hi,
I am new here and hope this is the right place to be. My daughter is 17 months old and has a long, complicated medical history including severe reflux, aspiration, lyrangomalasia, Failure to Thrive, severe central and obstructive apnea, low muscle tone, many sinus infections, and wears orthotics to help her walk. She has been hospitalized 7 times and had surgery where they did a nissen fundoplication and G-tube at 3 months old. She also has problems with digestion (large amounts of undigested foods in stool) and has a hard time gaining weight even with the G-tube. She also has re-current infections and has never respon...
Source: Cystic Fibrosis Newly Diagnosed Forum - April 24, 2015 Category: Respiratory Medicine Authors: Kathryn Sneed Tags: Newly Diagnosed Source Type: forums
Negative reaction to enzymes, anyone pretty familiar with them?
Hey guys, first off sorry for having a ton of questions, I'm new to being treated for cf and this forum has been great.
I was wondering if anyone has ever has any adverse reactions to enzymes? I was prescribed zenpep and every time I take it I have an adverse reaction, the best way I can describe it which sounds odd is I basically have the symptoms that the enzymes are meant to help. I will have bad stomach pains as soon as I eat with them and then go to the bathroom where I have floating loose stool, but any other time my stool sinks normally. But what's worse is I get the worst intergestion ever with them like a tightne...
Source: Cystic Fibrosis Nutrition Forum - March 14, 2015 Category: Nutrition Authors: Mike Brown Tags: Nutrition Source Type: forums
Fecal elastase test vs pancreatic stimulation ???
I am the mom of a 4.5 years old child in limbo who may or may not have CF. Briefly: several negative sweat tests, 2 genetic tests that both came back with a variant that's known to be related to pancreatic problems but nothing else.
And 5 fecal elastase tests over the years that came back ranging from 150 to 87 (last one recently), done at least in 2 different labs, collected by either my husband or I. Had been diagnosed as PI. And one pancreatic stimulation test recently that came back all fine, the GI doctor told us: he has no pancreatic problems, give him immodium when he has diarrheas.
He has had diarrheas problems...
Source: Cystic Fibrosis Families Forum - March 7, 2015 Category: Respiratory Medicine Authors: sanfloraine Tags: Families Source Type: forums
Delta 508 & C2657+2_2657+3INSA
Hi there
Our gorgeous little e girl was diagnosed with CF at 3 weeks old. She is now 3 months old and doing great. We have just got the results back in relation to her gene mutation. One of then is d508 and the other is C2657+2_2657+3INSA which I have been advised is a very rare gene type. We are based in Ireland and our consultant knows very little about this particular gene combination. One thing that he has indicated is that our daughter is likely to to be pancreas sufficient and that she may have a milder form of cf. As you can appreciate we are trying to get out heads around this and believe that this is very good ne...
Source: Cystic Fibrosis DNA and Mutations Forum - March 6, 2015 Category: Respiratory Medicine Authors: G-STAR Tags: DNA and Mutations Source Type: forums
Alcohol and cf?
Anyone with cf still occasionally indulge in a few drinks?
Was wondering if being pancreas insufficient was the same as having pancreatis? I know cf effects your pancreas because of the mucous clogging it up, but is this same same as having pancreatis? If so, I know ithat you can't have any alcohol. I haven't had a drink since being diagnosed a month ago and will continue not to if that's the best course of action, but was unsure if occasionally having a drink or two is a big issue or not.
Can anyone with experience chime in that would be much appreciated. (Source: Cystic Fibrosis Nutrition Forum)
Source: Cystic Fibrosis Nutrition Forum - February 28, 2015 Category: Nutrition Authors: Mike Brown Tags: Nutrition Source Type: forums
Secondary Pancreas and glucagon help please!
Forum: Biology, biochemistry and other life sciences
Posted By: parkerposse
Post Time: 22-02-2015 at 13:59 (Source: The Student Room)
Source: The Student Room - February 22, 2015 Category: Universities & Medical Training 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
