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Spencer
New Member


Date Joined Nov 2015
Total Posts : 1
   Posted 11/9/2015 9:37 AM (GMT -7)   
My name is Spencer. I am 23 years old. I have the delta F508 mutation. I have had digestive issues my whole life. For awhile i thought it was just food allergies that i had that were causing it. So i cut out those foods. Which it did not help. Then after i graduated high school the issues were so bad that doctors could not figure it out. Then i ened up having my gallbladder and appendix removed because they made me very sick and ill. Which then helped for a short period. Then i started living in and out of the hospital. I was called a drug seeker. So then i Went to KU medical Center. They found out that i had chronic pancreatitis. So they did a genetic test which is when i found out the mutation I had. So They started me on medications to help and a nerve block which helped alot. I lost relationships and jobs because of this. It ruined my marriage which i am now divorced. Its hard to live still but not like it was. Just wish there was other ways to control it and medicine to help.

Austin Witmer
New Member


Date Joined Oct 2015
Total Posts : 4
   Posted 11/10/2015 6:26 PM (GMT -7)   
I have Cystic Fibrosis and my mutation is the Delta F508. I am on this new medicine called Orkambi and it is not meant to cure the mutation but it does reduce the symptoms. I have been on it for about a month now and I can already tell it is helping me. You might want to talk to your doctor about it if you have CF.

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 11/13/2015 4:12 AM (GMT -7)   
Hi Spencer,

As Austin said Orkambi is a new medication that's out that helps treat those with double df508. You should ask your doctors if you aren't on it already. Are you seen by a CF specialist team or a regular doctor. Not 100% sure how it works over there as medical care is a bit different but I know you do have specialist teams but they're usually long distances to travel unless you live in specific areas.

The main cf medications are :
Enzymes like creon or zenpep
Long term antibiotics -oral and nebulised
Short term antibiotics-ciprofloxacin, septrin or IV antibiotics
Pulmozyme nebulised
Vitamin supplements - mostly A,D,E and K
Hypertonic saline
Meds for acid reflux like omeprazole

Physiotherapy- most use the vest in the US but there is also acapella, PEP, Aerobika and Flutter.

It's hard keeping on top of treatments and trying to have a life, it must be harder when you've only just being diagnosed and quite scary. I think it will get better, easier to manage and also easier to manage relationships.

If you have any questions, do ask.

Gem
Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 29 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Proximal Myositis, Polyarthralgia

Wiley Coyote
Regular Member


Date Joined Jan 2015
Total Posts : 37
   Posted 12/9/2015 2:55 PM (GMT -7)   
As an aside, Orkambi does not help everyone, only about 40% of the people who take it. 40% have no real effect, and 20% (I was in that lucky group) were actually hurt by it.
CF DDf508 w/ CFRD (dignosed 3 months) 43 years old, 2 kiddos

pianogirl
New Member


Date Joined May 2016
Total Posts : 3
   Posted 5/13/2016 2:39 PM (GMT -7)   
Hello! Whenever I look up Orkambi it's always stressed you need to have both copies of the DeltaF508 mutation, but only have one and a 17171-ga mutation, which I guess means I can't take it. Does anyone know why though?

pianogirl
New Member


Date Joined May 2016
Total Posts : 3
   Posted 5/13/2016 2:49 PM (GMT -7)   
Also message to Spencer...probably won't see it as it's about a year late... take creon! Creon is bae. I take 1 creon 10,000 per 7 grams of fat, which seems to work for seem reason. So about 4-7 for meals and 2-3 for snacks. Have a feeling people may need to take more than this, the best way is to experiment and see which number is best for you. A higher dose of creon is probably best, I think 10,000 is relatively low. It took years of trial and error to get to this happy place of no cramps at all, unless I forget to take my pills. Now I take this magic number of creon I haven't had a single problem with my digestion and I'm exactly in the middle range of bmi. So it's totally possible, you've just got to stick with it.
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