hey, i'm almost 17 w/cf and i am hardly ever sick. i was only in the hospital one time and that was when i was a baby and diagnosed. my brother, who also has cf, was sick and they tested him for it, so they just decided to test me. well anyways, i have had pnewmonia a few times and i get bronchitis about 1 time a year. My doc just puts me on antibiotics and i always get better. well not this time. i was put on leviquin for about 2 weeks and i didn't get better at all, but we never bothered to tell the doc about it untill we went back 3 months later. i was then put on a very high dosage of cipro. cipro has always worked great for me, but it so far hasn't this time. i have been on it for 2 1/2 weeks and i get off in about 3 days. in fact i'm getting sicker. my pft's was low when i went to the doc last, but they said that was because i was sick. i had to start doing flonase and i use to only take albuterol 1 time a day, but i now take it 3 times day. i haven't gotten any better and i'm scared that my health is going to start declining.
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SCARED!!!!!!
- Thread starter anonymous
- Start date
don't worry you'll be fine. the thing you did wrong was not telling your doctor you weren't feeling better. its always best to tell him right away so not to get sicker. its easier to beat infections if you tell your doc fast too. plus your doctor isn't puttin gyou on huge antibiotics because you have been so healthy in the past. did you tell him you had been sick for the past 3 months? if you did he either didn't think you were taht sick or wanted to try something else before going for the big stuff. if you didn't tell him he probably doesn't realize how sick you are. you have to tell them just about everything so they know how to treat you. I say call your doctor now. tell him the cipro isn't working and you feel even worse. don't lie to him if your afraid of hospital stays. sure they suck but its only because your not home. they don't probe you in your sleep or anything. lol its jsut an aggresive way to knock out infections. even for people who don't get sick alot like you its ok to go into the hospital when need be. sometimes i have heard of people just like you getting one big lung infection and going into the hospital for two weeks and they don't get that sick again for several years. not everyone is like that though. and true for people with cf your health declines ove time. but with you being young and neveer being sick enough to go to the hospital except once in the past i say you have a great record and the only way to keep it that way is to tell your doc your not getting better. do not put it off. i have learned this myself. i put going to the doc off several times as a teen and have lost some of my health but for you maybe you can still regain it. tell your doc your going to need some strong stuff. i have been on levaquin before too and if that doesn't work the first time its a sure sign that somethign else needs to be done. i don't mean to scare you. there is really nothing to be scared of. i am just saying all this because ffrom your post i get that you are even scared to call your doctor or to be put on ivs or even in the hospital. and i am also saying from my own experience don't be scared and call your doc. sometimes you even have to ge on their butts to give you stronger treatment but you know your body and if your getting sicker you need somethign else to be done. from what you said things that have worked in the past aren't working now, also another sign you need some stronger treatment whateve that maybe. also jsut because the cipro and leviquin doesn't work now doesn't mean it won't in the future, it could just mean you have such an infection going on and for so long you jsut need the more aggresive medications which can be ivs. but thats for you and your doc to decide. just try not to worry so much. it will be ok. trust me. i know several people who have beaten so many infections that at the time even the doctors thought it was the start of their decline but it wasn't. i even know of one man with cf who is truely an inspiration. he was only 93 lbs and at 10% lung function only 4 years ago. he is now a weight lifter, well over 175 lbs he is so buff, and he brought his lung function back up to 32% that may sound low but he does more than others i know who don't have cf. he works his butt off. goes to the gym everyday. has a job and goes to college. he goes into the hospital for regular tune ups just to keep from getting sick, usually around the spring and fall when he would be sick. he is a great friend and a great inspriration to me. i hope he is to you too. i hope you get to feeling better soon.Amanda
I can tell you're scared & we've all been there at one time or another.Amanda was right, you should call your Dr. A different antibiotic or maybe even IV's may be needed. I've had home IV's twice & it is a little scary the first time, but I'm telling the truth when I say I felt sooo much better after the first ones & really didn't even cough for a long time afterwards. It's just taking that step, (IV's) & being scared & feeling like you're on a fast track down because you're doing IV's & that isn't the case at all. Normal people w/o CF get pneumonia & stuff & need agressive antibiotics & occasionally IV therapy too. Just think of this time as a "speed bump" in the road of life and keep chugging along!Please keep us posted on how you continue to do.<img src="i/expressions/face-icon-small-smile.gif" border="0">
bowlingguy
New member
Things will work themselves out, its just another part of hacing cf, i was about right where you are when i had my first hospitalization for antibiotics and my white count was up and normal oral antibiotics didnt get me feeling better or lower the white count, same scenerio except it was ceptra back then, anyway honestly sounds like u need a nice dose of IV antibiotics, if u seem to get sick atleast once a year maybe your doctor should think about starting "tune up" iv treatments once a year, when i was 15 my doctors started me on those twice a year actually, which i know think was excessive and might have lead to antibiotics becoming resistant, but anyway dont be afriad of being hospitalized or being on IV antibiotics, i know i was so scared my first time when i was 15 but after i saw the other cystics in there and talked to the nurses it wasnt bad at all instead was more of a vacation from school and parents <img src="i/expressions/face-icon-small-smile.gif" border="0"> know at 33 when im hospitalized i go on home iv's as soon as sputum culture is back, usually 4-5 days, which is something else u could do, maybe not a good idea on your first time with IV's but again something to think about...hope u feel better good luck and god bless
hello my name is Clarke Johnson im 33 years old with CF I have had a double lung transplant and have been out for almost 7 years. You can not be scared to tell your parents or doctor what is going on because you will get youself in trouble if you dont. If you have any questions feel free to ask my email is souixem2@yahoo.com i will answer any questions that you have.