Orkambi Journey with 19 y/o Allan Diagnosed at 4 months
I really wasn't sure how to do this. I am the father of Allan. He is a bit shy to post his own thread and definitely not a YouTube video. So here I come. Hope its Ok to start my own thread. You may post in here and ask questions if you wish, if you have CF, a parent of a child with CF or just curious about CF. I am an open book. I can only put in this thread of what my son tells me. He knows this is being done and I do have his consent.
So just a tad bit of background on Allan. He is 19 y/o and he was diagnosed at 4 months old by a Doctor here in Texas.
His Normal FEV1 is usually around 85% on a good day. Had a b...
Source: Cystic Fibrosis Adults Forum - August 24, 2015 Category: Respiratory Medicine Authors: Allansarmy Tags: Adults Source Type: forums
Negative sweat test but lots of mucus
Well our 7 year old daughter came back negative on sweat test. Which is a relief but leaves me puzzled.
My neice is a carrier. We just found that out.
My daughter has to "heeeave" throughout the day, every day, to work up the mucus and spit it out. It is just part of our daily life. I just don't know what else would be causing all this chest mucus? Any ideas? I hear it is very rare to get false negative on sweat test, even for an atypical cfer.
Perhaps her original diagnosis of asthma is correct? I just don't know.
We've watched videos of asthma and CF on YouTube together. The asthma videos she...
Source: Cystic Fibrosis Newly Diagnosed Forum - August 20, 2015 Category: Respiratory Medicine Authors: Janae Warren Tags: Newly Diagnosed Source Type: forums
"Normal" for CF kids
DS loves pretend play. This morning while wrapping up some work stuff he came in and showed me "Caterpillar's medicine he got from Walgreen's so he doesn't cough when he runs." He had taken a toy, stuck it in an envelop and is stabling a "label" on the outside with various Caterpillaresque prescription names.
He. Melts. My. Heart. Every. Single. Day. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 19, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Treatment for the mildly diseased
I've got my clinic visit coming up next week and am conflicted about starting Orkambi. I don't love the price (even though I won't bear the brunt of the price, I don't love making my self-insured employer pay), I'm nervous about possible side effects especially those involving the liver, and am little disappointed that it doesn't seem to be as effective as Kalydeco. My lung disease has been somewhat mild. I only do Tobi 2-3 months of the year usually during flare up in the winter, I've yet to be hospitalized for a pulmonary exacerbation, I cough and produce but it is rare for it to be any sort of disruptive. I'm still at t...
Source: Cystic Fibrosis Adults Forum - August 7, 2015 Category: Respiratory Medicine Authors: ethan508 Tags: Adults Source Type: forums
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
Anyone started IV antibiotics instead of orals for their first ever infection?
I was wondering if any of you were ever put on IV antibiotics for your first infection?
My daughter is 4 years old, was diagnosed with CF at birth by newborn screening and has been very healthy since. She recently started coughing (about a month ago) and her doctor insisted on doing a sputum culture before prescribing her anything. It was a very hard couple of weeks trying to teach her how to cough sputum and then finally we were able to do it. She cultured Hemophilus Influenzae and her doctor immediately wanted to admit her and give her IV's for 10-14 days (she also developed a low grade fever 2 days prior to the culture...
Source: Cystic Fibrosis Families Forum - July 23, 2015 Category: Respiratory Medicine Authors: MyBabyCeline Tags: Families Source Type: forums
CRMS and Culture results
My 1 year old son has a CRMS dx. He just had a clinic appointment a week and a half ago which resulted in a second negative sweat. Our pulm said at the appt that he appears to be healthy - clear lungs etc. She called yesterday to tell me that his culture results came back positive for staph, Chryseobacterium Indologenes, and Acinetobacter Baumannii but that because he is appearing healthy and has a negative sweat that they are nothing to be concerned about.
Today he started having a running nose. He's 12.5 months so my first thought was teething. But as the night has progressed he has been seeming to be having some resp...
Source: Cystic Fibrosis Families Forum - July 19, 2015 Category: Respiratory Medicine Authors: emason Tags: Families Source Type: forums
when did your symptoms start to show?
Now I know everyone is different..... different mutations, and even the mutations though may they may be the same. Affect the persons differently. But I was wondering as a oarent of one w/ cf (ddf508) well when did you start showing your symptoms? How when the cough realky started forming? Are there any ddf508 that are can digest food? What types of excercises do you do? Anyone on kyldeco, or other and gotten better? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 17, 2015 Category: Respiratory Medicine Authors: lrs2015 Tags: Adults Source Type: forums
Gene f508 and r117h ~7t
Im hoping someone can help me understand all this, my sons mutations were found at his new born screening he had a sweat test as a newborn and everything was in normal range they repeated the sweat test at age 6 months his chloride levels went up a bit so we went for another test at age 1 then his chloride levels were up even more and he was diagnosed with cf he is now almost 4 and has had no real issues with cf he has check ups every 3 months but nothing has ever really changed i have two other kids and he doesn't seem to really get any sicker then them. Im frustrated because he is on a vest twice daily with albuterol in ...
Source: Cystic Fibrosis DNA and Mutations Forum - July 14, 2015 Category: Respiratory Medicine Authors: Tiffany Kruit Tags: DNA and Mutations 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
referral for CFTR
Afternoon all,
had a bit of a bombshell today, after a persistant cough for 18 months which is productive I've been sent for CFTR test. Is this normal in a 27yo female? Chronic autoimmune issues for 25 years plus so not new to Drs.
Can an anyone offer words of wisdom or similar?! (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - May 8, 2015 Category: Respiratory Medicine Authors: Aimee Ford-Young Tags: DNA and Mutations Source Type: forums
Advice please-girlfriend with CF
Not sure if this is the correct place to post this, but feel free to either address it here or redirect me (with url) to the correct page and I can repost on there, thank you.
I met my gf at an online dating site and after emailing and chatting for a few weeks we started going out on a few dates. On the first date she was very open and explained (briefly) that she had CFwhen I asked about her cough. At the time I honestly didn't know anything about the disease, but wanted to learn more as time went on. I did small amounts of google research and talked with a buddy who knows a lot about the disease and explained a good pa...
Source: Cystic Fibrosis Families Forum - April 25, 2015 Category: Respiratory Medicine Authors: FallingForHer Tags: Families Source Type: forums
How did your decline go?
The changes in how I'm feeling overall since my last hospital stay feel drastic, however right now my numbers don't really reflect that.
I'm the past usually what would happen would be I would suddenly get sick with something (cold, flu, whatever), cough a ton, get to my couch out of breath then realize it's time for a hospital stay. Get tuned up then good to go back to my usual routine.
However, my last stay wasn't like that. I never really got "sick", I'm fact I was barely coughing at all besides when I really forced myself during treatments. I went in because of a really heavy sensation on my chest, and af...
Source: Cystic Fibrosis Transplants Forum - April 23, 2015 Category: Respiratory Medicine Authors: static Tags: Transplants Source Type: forums
My grandson is in the Hospital.. I am having one of those days :(
Hi.. you all may have seen my post about kids with CF reaching out to kids with CF. My grandson is 6 yrs old has CF. He is such a amazing kid and so smart.
I think he knows more about his meds and schedule than I do! He has sinus issues has always has had a runny nose :) he takes zrytec and cincular plus all his other meds :0 He had a sinus infection and even with predisone and antibiotic he got worse. He was admitted to hospital Sunday for exacerbation of CF .. to me this means he cannot stop coughing! This is hard and because of a terrible reaction to antibiotics last Oct. the docs are being very cautious with what med...
Source: Cystic Fibrosis Families Forum - April 22, 2015 Category: Respiratory Medicine Authors: Carol H Tags: Families Source Type: forums
