Diagnosed at 36
Hi everybody,
I joined the forum when i was diagnosed with cystic fibrosis this summer, but for some reason I couldn't post under my old screen name.
I was diagnosed in July after my pulmonologist did a full panel of bloodwork. I had previously passed 2 sweat tests. I have moderate bronchiectasis and am culturing m. absessus. I spent 4 weeks on iv antibiotics this summer and got pancreatitus as a side effect. This was my drs big hint.
As i said in the title i am 36yo. I had no idea anything was wrong with my lungs till i got pregnant with my now 4yo son(carrier-d1125h). At 5 weeks pregnant i had my first and only re...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 2, 2015 Category: Respiratory Medicine Authors: alikat0079 Tags: Newly Diagnosed Source Type: forums
Obamacare and Orkambi
Hi everyone! I am turning 26 in february (I'm off parents insurance) and wanted to know if anyone is on Obamacare and can still get Orkambi? I am having a lot of success with it. Additionally, is anyone on Obamacare and getting covered for pulmozyme, enzymes, TOBI podhaler? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 25, 2015 Category: Respiratory Medicine Authors: Megw212 Tags: Adults Source Type: forums
Obamacare and Orkambi
Hi everyone! I am turning 26 in february (I'm off parents insurance) and wanted to know if anyone is on Obamacare and can still get Orkambi? I am having a lot of success with it. Additionally, is anyone on Obamacare and getting covered for pulmozyme, enzymes, TOBI podhaler? (Source: Cystic Fibrosis Payment Assistance Resources Forum)
Source: Cystic Fibrosis Payment Assistance Resources Forum - September 25, 2015 Category: Respiratory Medicine Authors: Megw212 Tags: Payment Assistance Resources Source Type: forums
Best nebulizer recommended for Tobi and Pulmozyme
My daughter who is almost 5 just recently started doing Pulmozyme and will start Tobi in a few days. Up until now we were doing her nebs using a device that is not specifically recommended for CF meds. I want to look for something online (I live in the middle east and we don't have these types of nebs available locally) that would be the best for use with these medications but I have no idea where to start. Can you guys recommend something for me? I want a device that is known for its best delivery of these medications and if it's light-weight and can operate on batteries as well as a power cord then this would be a plus.
...
Source: Cystic Fibrosis Families Forum - September 20, 2015 Category: Respiratory Medicine Authors: MyBabyCeline Tags: Families Source Type: forums
Styrofoam Rx boxes
So I searched the old threads, but was wondering if anyone has found a place to "donate" or recycle the styrofoam boxes that pulmozyme is shipped in. I have given away to friends and family, but we get 3 of these suckers a month and my garage in being over run by them! I hate to just throw them in the trash. Any suggestions besides building an igloo with them? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 25, 2015 Category: Respiratory Medicine Authors: 2005CFmom Tags: Adults Source Type: forums
Canadian Health Care System
I may be opening up a can of worms, but I wanted to know if there were any Canadians out there and how you feel about your healthcare system? Are you happy? Do you feel your quality of CF care is good? Do you have easy access to hypertonic saline, pulmozyme, Tobi, all the CF drugs? Are you able to see your pulmonologist when you need to? With all the debates going on right now in the states, I want to know how Canadians truly feel about their healthcare system. If you are in the U.S., how do you feel about moving to a single-payer system? Thank you,
rosesixtyfive,
mother of Sam (ddf508) (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 2, 2015 Category: Respiratory Medicine Authors: rosesixtyfive Tags: Adults 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
VibraLung Review
I also wanted to share my experience with the VibraLung. I have been using it for a little over three weeks now and, without question, this device is far superior to any other instrument (The Vest, Flutter, etc.) or airway clearance method (CPT, autogenic drainage, etc.) I have tried in my thirty-three years as a cystic fibrosis patient. I have been VERY blessed with great health overall but my FEV1 started dipping in 2013. Intravenous antibiotics, intense airway treatment and exercise did little to improve my lung function and I found myself hospitalized for exacerbations frequently. My health care team attributed it to a...
Source: Cystic Fibrosis Airway Clearance Techniques Forum - May 15, 2015 Category: Respiratory Medicine Authors: CaitlinA Tags: Airway Clearance Techniques Source Type: forums
I really want to become CF healthy
So last time I got my FEV (I think it's called that), I scored 106%. I fear that I have decreased by a large number. My last chest x-ray I had minor lung scarring.
But I really want to get healthy in terms of my lungs. I'm at a good weight (and my doctors have given me the 'go head' sign to lose, at most, 10 lb.). But when it comes to my lung health, it's not as great as I think it should be. I don't use my Pulmozyme as much as I should, and I use my inhaler a lot more than I do my Pulmozyme. I workout every other day (and if not every other day, the day after every other day).
So here's what i want to know:
1. How c...
Source: Cystic Fibrosis Exercise and Fitness Forum - December 16, 2014 Category: Respiratory Medicine Authors: Enzo2311 Tags: Exercise & Fitness Source Type: forums
Broncoscopy
My DS is getting fever frequently offlate and Sputum culture says there no growth what soever.
His ped pulmonologist is suggesting a broncoscopy. Somehow we are not comfortable with the idea.
We have never used pulmozyme before but want to use it before going for broncoscopy.
I understand it helps bring out the sputum deep inside.
Can someone please tell me if Broncoscopy is conducted on kids young as 3.5 yrs.
Is it safe. What are there any guide lines for it in your respective countries.
Please help. (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - October 14, 2014 Category: Respiratory Medicine Authors: Mallika Tags: Newly Diagnosed Source Type: forums
Drugs During Pregnancy
I'm sure this answer is here somewhere but what drugs are allowed and not allowed during pregnancy. I am currently on TOBI Podhaler and alternating that with cayston. I also take Pulmozyme, albuterol and hypertonic saline, as well as azithromycin (500 mg 3x/week), symbicort, flonase.
Any info would be appreciated. (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - August 3, 2014 Category: Respiratory Medicine Authors: KEC1984 Tags: Pregnancy Source Type: forums
mom of a 16 yr old daughter
Junior Member Join DateFeb 2014Posts1
Hi I am also new to this site. I am a mom of a 16 yr old daughter. She has ddf508, mostly weight issues. She is 5'2, 94 lbs. She has a g tube and takes 2-3k calories at night. She also does hyper tonic, pulmozyme, albuterol and the vest. Her dr says she has very mild chrons, but she never has any symptoms and hasn't taken the pentasa for a while. She has maintained her weight and height and fev of 72-4 for the past yr without any hospitalizations. They want her to be at 100lbs. I feel like her GI dr always wants to do unnessecary tests. Now he is saying her lack of weigh...
Source: Cystic Fibrosis Teenagers and Young People Forum - February 19, 2014 Category: Respiratory Medicine Authors: heathercrittendon Tags: Teenagers and Young People Source Type: forums
St Johns Wort
Could this natural herb interfere with Creon, Pulmozyme and Albuterol?
Is this safe for CFers? (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - July 31, 2013 Category: Respiratory Medicine Authors: Enzo2311 Tags: Teenagers and Young People Source Type: forums
Therapies: What do you do each day?
Hey there!
I think it would be interesting to read what kind of therapy everyone is doing, especially concerning age, which mutations and where you come from. If you are also interested, please share!
I will make a start:
22 months old, with f508del and r553x, living in Germany
morning: Sultanol, after that 4ml HTS 6%
midday: 2,5ml Pulmozyme
evening: Sultanol, after that 4ml HTS 6%
after/during each neb session doing stretching exercises, blowing games etc.
Taking Kreon, AntraMups, Aquadeks, Vitamin D and if necessary oral Antibiotics (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - May 7, 2013 Category: Respiratory Medicine Authors: Kaethe108 Tags: Airway Clearance Techniques Source Type: forums
