Help for ihatecf

[kayleesgrandma]

I called my cf clinic and they were no help. I'm going over to our local Islamic Center which is right by the library where I'm at now with computer. I don't know what I'm going to say to them yet, but they must help their brother in Lebanon! My cf clinic said Tobi costs $3800--is that true?! Anyway, I thought maybe those of you who have Islamic centers in your town could take a copy of Rami's post and see if they can help.

 

[Ratatosk]

Tobi is spendy and needs to be kept cool. But maybe there are some posters here who found they couldn't use tobi and have some extra laying around. As far as the CF clinic, ours gets TONS of samples of Vitamins, so I would think at the very least they would have some Vitamax or ADEKS laying around. We used to get the ADEKs vitamin drops for free 'cuz DS was the only one using them and we still get our neb cups from the clinic. Ditto with samples of enzymes -- most doctor's offices get samples of stuff from the drug companies.

 

[Asexyblond23]

Hey i have tobi that I dont need. If you can use it then please it is all yours. I was on it but I cant take it anymore and I have almost a whole box that is just sitting in my fridge that I have been trying to find someone who could use it. If you would want to pay to have it shipped out to you. I have a shipable cooler and ice packs and the tobi is all yours. You can email me at asexyblond23@excite.com


Alisha

 

[Scarlett81]

You may not have electricity even to use a nebulizer, right?

We will try to mail you inhalers and other types of meds then. I too have cepacia, so I wouldn't want to give you one of my inhalers just in case. But I am going to my clinic in New York Monday. I'll tell them about your situation. I myself just got back from the UAE last month. And we have lots of friends that travel there frequently. We'll try to contact someone who's going there soon and they can give your relative the meds in person.

Wishing you saftey. We're all thinking of you and worried for you. Many people here care Rami.

 

[julie]

N/M. I just saw the posts.... sorry.

 

[ihatecf]

Our electricity is from generators now. I'm still able to do the bronchodilators through nebulizers. The bronchodilators like atrovent and albuterol are availalbe still. All what we need is enzymes, Tobi, and vitamins. Please informe me when u manage to ship anything.

Thanks all

Rami

 

[JazzysMom]

Rami......I am so glad to hear that there is a place we can send meds. Sorry I havent been in touch. My computers went haywire & I was out of touch with the world! I will forward soome Ultrase MT12 enzymes to the address & will catch you soon. Jazmine sends her love & prayers. She is very concerned about you!!!

Thank you to the CF forum users for jumping on board to help.

 

[kayleesgrandma]

Well, the Islamic Center was a no go. No one there, and the one person there didn't speak English. You need a prescription for enzymes, so can't so that, I'll try for vitamins. What kind do adults use--I just know about the drops for children?!

 

[Diane]

I contacted a former nurse of mine and sent her a request and she emailed me back and said she would see what she can do. Now when i go to my center next week, i will get them to get some samples together......... I was thinking , i could get some vitamins ( generic centrums)and have my mom pack them so that there is no worries about cepacia and send them off if they would be ok....Or did you specifically want ADEKS?