Fw: Tobi/Tine/Don't give up

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-----Oorspronkelijk bericht-----

Van: a Varga

Aan: wijker.zwaan

Datum: vrijdag 23 mei 2003 23:37

Onderwerp: Re: Tobi/Tine/Don't give up

Hi again Tine,

Yes, I will let you know what comes out of Monday.

My friend that has gone deaf, has been told by the specialists that it is from

the Tobramycin. has been on both IV and inhaled quite extensively and his

hearing has got worse and worse. This is what I am cranky about, because they

have never once warned us of the side effects. Anyway as Cathy said in one of

her posts, it is either the devil or the deep blue sea.

Let you know what happens. Sometimes I feel so frustrated with this disease, as

every time you think you are getting ahead and making some progress, something

else comes along just too knock you off your feet and make you feel defeated.

Well, we won't be defeated and we will all just keep getting up!!!!!! Keep going

out there, to all of you who just feel like giving up. We are strong for a

purpose and that is too keep fighting. Many times we do not know what is in us,

until it is needed. Be encouraged guys, because you are strong.

I don't know why I started to write all that, except I know it was for someone

out there.

DON'T GIVE UP. YOU WILL FIND YOU HAVE WHAT YOU NEED INSIDE YOU TO KEEP GOING.

Regards a.

" wijker.zwaan " wrote:

Dear a,

There is no proof that my friends daughter did get the hearing problems

through the Tobi inhalation. It could be a coincidence. But the problems began

starting Tobi. She knew I always read the post of this list and asked me to try

and get any information about this.

There is also a difference in Tobi inhalation and IV. Gwendolynn never had

IV's up till now (and no Tobi inhalation either) and my friends daughter only

inhaled it. So we do not know anything about that. I just read that in that case

fingerpricks are done. Are they done every day? Are you doing them at home also?

We just do not know if the inhaled Tobi and the hearing loss is related. Any

information on that and experiences of users might be helpfull. So please ask

your doctor in your centre what he knows and thinks about the side effects. We

may learn from eachother.

Thanks for your information and please let me know what you discover on

Monday.

Best regards,

Tine Zwaan

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