what has made a big difference

[anonymous]

I would like to know what therapies or meds have made a big difference for people with cf. (I'm looking for things to try or ask my doctor about)

Here are a few of mine to start:

1. Hypertonic saline - nothing has been as effective as HTS at helping me raise stuff. Not the vest, the flutter, Pulmozyme or even cardio.
2. Prilosec - I thought heartburn was part of life with cf until I was introduced to prilosec 12 years ago.
3. getting a mediport! - I had way too many picc lines before getting a port. I love my port!
4. Megase - nothing has increased my appetite and helped me gain weight like megase. My doctor agreed to let me try it as a last ditch effort before a g-tube. Thankfully it's worked!

Given that only one of the above was <i>suggested</i> by a doctor, I think it's important that we share ideas of what to ask the docs about!

Jason 30 w/cf

 

[anonymous]

I would have to say the following have made a big difference:

1. Port placement - no more sticks & no more worries about not getting needed meds on time
when IV lines blew or PICC placement was difficult.
2. Curcumin - started this a year ago and have noted wonderful changes. Weight gain of 22 lbs.
and a big improvement in sinuses.

 

[anonymous]

Hi,
How did you get the circumin? I have heard of it, but don't know a lot abouit it. Is there a dose to take? I understood it to be an herb or something.

Thanks,
Mikes Mom

 

[Mockingbird]

Curcumin is a supplement you can take... it's important to ask your doctor, since as far as i know they have determined if it's safe yet. It's also very expensive, and there's no guarantee it'll work, so use it at your own risk. Also, as with any supplement, you have to be careful which brand you buy, since they're not regulated by the FDA they can have different strangths and potencies and not have to tell you about it.

Jarod
22 w/cf