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Cystic Fibrosis
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Posted 1/4/2006 6:49 AM (GMT 0)
Hi im new to this board. my name is patricia and i am 22 yrs old. i am the oldest of 5 kids. the last 6 months, i have been very ill. i have always gotten sick easy but this past year has been the worse yet. i am orginally from ohio and i moved to florida 5 yrs ago when i was diagnoised with asthma, however aug of 2005 i been vomiting every single day, whether i ate food or not, i have had freguent lung infections(brochitus and phenomen) and stomach infections, severe stomach pains, very few bowel movements, chronic deep cough, wheezing at night,loss of appeite,and 20 lbs weight loss. Well at first the stupid doc that i was seeing thought i had a eating disorder didnt look into my compliants whatsoever so i switched docs. my new doc sent me to a Gi to get some testing done, well i found out i may very well have Cystic fibrosis the disease which killed my 9 yr old sister and my 26 yr old aunt. Well i have fatty stools and my blood test came back postive. i have a blockage and i also have no ezemyes(i think its spelled right) well i am on sooo many pills right now. and i go to see the cystic fibrosis foundation to be final diagnoised with the disease next tues. i am scared. no one is my family has lived to see 30 yrs old yet and im getting sicker every week. what do i do? what do i expect? why me? what did i do that was so wrong? what about my 2 yr old son? i dont want to die. i love living. but im scared. i dont have a lot of support here. im confused. im lost. and well im scared. by the description i have givn u..does it sound like i have the disease?????? why is all my tests coming back postive that has to do with this? mad

please help me..tell me what u think

Tricia

Posted 1/4/2006 6:28 PM (GMT 0)
Hi Tricia! Im Nicole and I am 18. I have CF,liver disease,and diabeties. The liver disease and diabeties was caused by me having CF. I know u r scared and trust me it is not an easy thing to go through! Once the doctors put u on the right meds and breathing treatments u will soon start to feel better. With out all my meds and breathing treatments I know I would be sick all the time. The thing that keeps me going is knowing that God is taking care of me and with out him I would be in alot more worse of a situation. Just hang in there u have to and know that God is going to take care of u. Please do everything the doctors tell u to do.
I will keep u in my prayers. Nicole
Posted 1/5/2006 3:50 AM (GMT 0)
thanks for the reply! i am tryin as hard as i can, but i feel weaker every day and i just want to know for sure ya no what i have..the 10th of this month cant come soon enough. i dont know really what to do but stay frustrated and keep taking all the stupid meds i have to take. i really dont know how my sister did it for 9 yrs without getting tired of it. i been on meds now for 5 yrs and im about done with the hope of the meds. i mean why do they make me sicker? or is my disease progressing and i need stronger meds? im so confused and so lost..but thanks!
tricia
Posted 1/5/2006 12:00 PM (GMT 0)
Tricia,

try and relax as much as possible. I know things are difficult for you right now. I agree with Nicole, as soon as you are tested and if you have CF, the diagnosis, the started meds, you will feel much better. Let us know how it goes.

Feel better soon.
Posted 1/5/2006 11:35 PM (GMT 0)
You have to stay strong if u dont you will just feel worse! I know u dont feel like u can be strong right now but u have to try if u dont you r basically giving up on yourself! Just try to be patient and if u get knews that u dont want to hear u still have to soak it all in so that u will know what to do to start feeling better. And please have faith in God because he is trulely the greatest medicene out there.
Nicole
Posted 1/6/2006 4:38 AM (GMT 0)

well i have primarily been diagnoised. my gi has me on his charts with cf but however he said that the cff has to diagnoise me. i am already on cf meds. i take reglan 4 x daily and i take pancreas emezyens(i know i spelled it wrong sorry). i also take a lot of other antiacids. so now i just wait for the final dx.

thanks for the replies

tricia

Posted 1/6/2006 10:03 PM (GMT 0)
Hi Tricia.  I'm 14 and Ive had CF all of my life.  I know that it can be VERY scary at some times, but you just got to have faith!! I was diagnosed at 6 months, and my mother went all over the county (and state!) looking for an explanation for my toy football sized feet and my constant crying (and starving)  We finally had a sweat test done ( I think it measured like the amount of salt in my sweat) anyway, we had to go to a hospital more than an hour away and get me diagnosed. 

I inhale (Nebulize) albuterol 4 times a day, Nebulize Pulmozyme once a day, and Nebulize Tobramyacin once a day (TOBI)  I am going into this new year facing a right upper lobectomy in February.  Last night  I almost cried myself to sleep thinking about all the chest tubes and the pain.  But there are others much worse than me. 

Just keep the faith and all will be better.  Trust me.

I will pray for you !!

 

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