Not sure what to do

anonymous

New member
Hi, I post here sometimes but usually just in answer to questions, etc. Right now though I am nervous and sick and i am not sure what to do. I got a cold last Friday, but it was REALLY bad, like coughing tons of stuff up and my chest felt like it was just FULL. Not like a normal cold. Anyway, I rested and rested but it is not getting any better, and now for the most part the head part is gone, i.e. sneezing, runny nose, but my chest is just so congested and I am constantly coughing stuff up and it is never clear. My doctor put me on cipro for the cold (we communicated over email) and i started that on Monday morning. Since then I am still feverish, still coughing, and my 02 sats have dropped to like anywhere from 91-94, normally they are 97 ish. Often when i start an antibiotic though I get worse and feverish during the first few days, so i am not sure if it is just a reaction to the medicine working.'

The thing is I am 22 and normally live in Boston where i go to school, but my family lives 1/2 hour west of boston so they are close and i am home alot. But they left to go down to the Carribbean (!) on monday. They were concerned about me but everything looked like i had a cold. Ironically they have had to cancel TWO vacations on my behalf for being sick....it seems like i have really bad timing. But now I am so sick, and although I have people around me to help, I am freaking out and sad and nervous, and dont know if I should call my doctor and go into the hospital. The thing about it is, and I am sure you know, that once I call and explain what is wrong, they are just going to want to put me in the hospital, and that changes everything! Plus, the thought of going in without my mother is awful- she helps me and just knows everything. When it comes to my health my mom is always there. Plus i just broke up with my boyfriend of 3 years like 2 weeks ago, and normally he would be the one to help me, he knows everything too, but this is awful!! Right now I am alone in my house at 6 am and I am scared and I cant sleep. I think my nervousness is making me feel more sick. I just dont know if I should call the doctor and maybe be admitted- but it would be horrible I would have to do so much stuff to even prepare for that- or if I should wait it out- or if I should call my parents. I dont want to upset them but I know that if my mom knew I was feeling this way she would of course want to know.

I guess I just also need some sympathy. I normally live alone but am never alone when I am sick and it is scary. I kidn of feel stupid even writing all this but i didnt know where else i could. thanks

Caitlin
22 w/ CF, b. cepacia
 

anonymous

New member
Hi, I post here sometimes but usually just in answer to questions, etc. Right now though I am nervous and sick and i am not sure what to do. I got a cold last Friday, but it was REALLY bad, like coughing tons of stuff up and my chest felt like it was just FULL. Not like a normal cold. Anyway, I rested and rested but it is not getting any better, and now for the most part the head part is gone, i.e. sneezing, runny nose, but my chest is just so congested and I am constantly coughing stuff up and it is never clear. My doctor put me on cipro for the cold (we communicated over email) and i started that on Monday morning. Since then I am still feverish, still coughing, and my 02 sats have dropped to like anywhere from 91-94, normally they are 97 ish. Often when i start an antibiotic though I get worse and feverish during the first few days, so i am not sure if it is just a reaction to the medicine working.'

The thing is I am 22 and normally live in Boston where i go to school, but my family lives 1/2 hour west of boston so they are close and i am home alot. But they left to go down to the Carribbean (!) on monday. They were concerned about me but everything looked like i had a cold. Ironically they have had to cancel TWO vacations on my behalf for being sick....it seems like i have really bad timing. But now I am so sick, and although I have people around me to help, I am freaking out and sad and nervous, and dont know if I should call my doctor and go into the hospital. The thing about it is, and I am sure you know, that once I call and explain what is wrong, they are just going to want to put me in the hospital, and that changes everything! Plus, the thought of going in without my mother is awful- she helps me and just knows everything. When it comes to my health my mom is always there. Plus i just broke up with my boyfriend of 3 years like 2 weeks ago, and normally he would be the one to help me, he knows everything too, but this is awful!! Right now I am alone in my house at 6 am and I am scared and I cant sleep. I think my nervousness is making me feel more sick. I just dont know if I should call the doctor and maybe be admitted- but it would be horrible I would have to do so much stuff to even prepare for that- or if I should wait it out- or if I should call my parents. I dont want to upset them but I know that if my mom knew I was feeling this way she would of course want to know.

I guess I just also need some sympathy. I normally live alone but am never alone when I am sick and it is scary. I kidn of feel stupid even writing all this but i didnt know where else i could. thanks

Caitlin
22 w/ CF, b. cepacia
 

mousesmom

New member
Hi Caitlin

I'm sorry you're feeling so bad. Without you Mom to turn to, and the boyfriend problem things really seem to be bad at the moment. I sense from what you are saying that your instinct is actually telling you that you need to call the doctor again. Please do! If the antibiotic isnt showing any sign of helping within 48 hours it probably means you need something else or stronger.

Don't resist going to hospital. At least there be more people around to talk to that could sympathise with your situation and I'm sure you'll feel a whole lot better quickley.

I hope you are feeling 100% very soon.
 

mousesmom

New member
Hi Caitlin

I'm sorry you're feeling so bad. Without you Mom to turn to, and the boyfriend problem things really seem to be bad at the moment. I sense from what you are saying that your instinct is actually telling you that you need to call the doctor again. Please do! If the antibiotic isnt showing any sign of helping within 48 hours it probably means you need something else or stronger.

Don't resist going to hospital. At least there be more people around to talk to that could sympathise with your situation and I'm sure you'll feel a whole lot better quickley.

I hope you are feeling 100% very soon.
 

nocode

New member
Hi! I really hope you'll be able to relax a bit , i know how you feel, i think we've all been there, especially while having a cold. Im 22 as well.. Normally what CFers do, in my opinion, is to relate everything bad that happens to us (health wise) with cystic fibrosis. We worry so much about everything and we easily panick. My sister for instance, yesterday she told me that she has the worst cold ever and is coughing up blood (she's 28, and doesnt have CF).. You know.. these things, even though they can be dangerous for us, they could also pass in like a week and out health can go back to the same and we realize we worried too much. I try to think like this because i try not to get too negative about things.. So my advice is, sit down, put a dvd on, something to take your mind a little bit off that or even get you to sleep.. Keep doing your treatments and try not too think too negative. I hope it'll work. Best wishes
Vera
 

nocode

New member
Hi! I really hope you'll be able to relax a bit , i know how you feel, i think we've all been there, especially while having a cold. Im 22 as well.. Normally what CFers do, in my opinion, is to relate everything bad that happens to us (health wise) with cystic fibrosis. We worry so much about everything and we easily panick. My sister for instance, yesterday she told me that she has the worst cold ever and is coughing up blood (she's 28, and doesnt have CF).. You know.. these things, even though they can be dangerous for us, they could also pass in like a week and out health can go back to the same and we realize we worried too much. I try to think like this because i try not to get too negative about things.. So my advice is, sit down, put a dvd on, something to take your mind a little bit off that or even get you to sleep.. Keep doing your treatments and try not too think too negative. I hope it'll work. Best wishes
Vera
 

JazzysMom

New member
You didnt mention increasing your treatments at all. I "assume" you are doing this. The antibiotics only help so much. There more congested you are the harder it is for the antibiotics to do their job. You need do work extra hard on getting that excess sputum out. I am sure a lot of whats adding to your really poorly is the stress from the boyfriend thing & your family going on vacation. I suggest giving it a few more days of the med, but work REALLY hard on your treatments. Increase them, do them longer & try with all your might to get as much out of you as possible. If you have truly tried & dont feel better than I would think about going into the hospital! It can be scary & makes you feel alone, but you are not. You have us here if nothing else & I am sure your doctor is willing to work with you, but you need to do your part! I speak from experience. I use to just pop the pills, but not put my effort into it so I would only get so much benefit!
 

JazzysMom

New member
You didnt mention increasing your treatments at all. I "assume" you are doing this. The antibiotics only help so much. There more congested you are the harder it is for the antibiotics to do their job. You need do work extra hard on getting that excess sputum out. I am sure a lot of whats adding to your really poorly is the stress from the boyfriend thing & your family going on vacation. I suggest giving it a few more days of the med, but work REALLY hard on your treatments. Increase them, do them longer & try with all your might to get as much out of you as possible. If you have truly tried & dont feel better than I would think about going into the hospital! It can be scary & makes you feel alone, but you are not. You have us here if nothing else & I am sure your doctor is willing to work with you, but you need to do your part! I speak from experience. I use to just pop the pills, but not put my effort into it so I would only get so much benefit!
 

RoyalPrince

New member
caitlin,
we all can't tell you what to do only what we think... having that said i agree that you should up your treatments to every four hours or so (thats what they do to me when i'm in the hopital as it opens your airways helping expell things easier. i would also some moderate exercise...i know you feel bad and depressed for several reasons but exercise will help you cough and expell the mucus more than just sitting there coughing and the endorphines you get from exercise will help make you feel better all over... the trick is keeping a positive attitude about the situation as it makes you feel better and actually helps you heal faster than sitting around being depressed about something that won't get better without work... also try to reach out to someone new (besides you parent(s) liike your mom all the time) it never hurts to expand your support system and it may be little step towards a more independant lifestyle which i think we all strive for as we get older...

just some thoughts and good luck
 

RoyalPrince

New member
caitlin,
we all can't tell you what to do only what we think... having that said i agree that you should up your treatments to every four hours or so (thats what they do to me when i'm in the hopital as it opens your airways helping expell things easier. i would also some moderate exercise...i know you feel bad and depressed for several reasons but exercise will help you cough and expell the mucus more than just sitting there coughing and the endorphines you get from exercise will help make you feel better all over... the trick is keeping a positive attitude about the situation as it makes you feel better and actually helps you heal faster than sitting around being depressed about something that won't get better without work... also try to reach out to someone new (besides you parent(s) liike your mom all the time) it never hurts to expand your support system and it may be little step towards a more independant lifestyle which i think we all strive for as we get older...

just some thoughts and good luck
 

anonymous

New member
Caitlin, I'm sorry that your feeling so rotten and having to go through it alone. I also live alone, and I know how scary it can be to know if your doing the right thing healthwise without someone to reassure you. Be brave, and know that you can do this! If your gut tells you to call your doctor and that you need to go to the hospital - do it.

While we can't physically be there with you, come here to chat if you start to feel lonely or need reassurance.
 

anonymous

New member
Caitlin, I'm sorry that your feeling so rotten and having to go through it alone. I also live alone, and I know how scary it can be to know if your doing the right thing healthwise without someone to reassure you. Be brave, and know that you can do this! If your gut tells you to call your doctor and that you need to go to the hospital - do it.

While we can't physically be there with you, come here to chat if you start to feel lonely or need reassurance.
 

anonymous

New member
Oh Caitlin,
Im sorry this is happening to you. Cepacia has a way of creeping up on you and making you feel so crappy and fevers are their favorite way to do it. It sounds like cepacia is wrapping its arms around you and getting you in its grip. Liquids are so important for you right now. I notice any time i get sick i get scared and stressed. I live alone also which you already know, and it can be scary. The fact that you and your bf have broken up recently doesnt help with your stress level also. Have you ever done iv's at home? When i start feeling the way you have been feeling i usually have to go on asn iv, and i always do them at home. Once you do them at home you wont want to ever have to go in the hospital for them again, unless of coarse you are uncomfortable doing them at home on your own. They do send out nurses to show you everything and help you and also do dressing changes and all that goes with it. Im going to email you and send you my phone #, you can so call me if you just need someone to talk to and help you thru this...............
 

anonymous

New member
Oh Caitlin,
Im sorry this is happening to you. Cepacia has a way of creeping up on you and making you feel so crappy and fevers are their favorite way to do it. It sounds like cepacia is wrapping its arms around you and getting you in its grip. Liquids are so important for you right now. I notice any time i get sick i get scared and stressed. I live alone also which you already know, and it can be scary. The fact that you and your bf have broken up recently doesnt help with your stress level also. Have you ever done iv's at home? When i start feeling the way you have been feeling i usually have to go on asn iv, and i always do them at home. Once you do them at home you wont want to ever have to go in the hospital for them again, unless of coarse you are uncomfortable doing them at home on your own. They do send out nurses to show you everything and help you and also do dressing changes and all that goes with it. Im going to email you and send you my phone #, you can so call me if you just need someone to talk to and help you thru this...............
 

anonymous

New member
Sorry for you feeling so poorly, but it sounds like you need to go in the hospital and have a good treatment session for a week or longer. I realize that can be difficult and interrupting to your life, but it is much needed. Your health is more important than anything else.

Take care.
 

anonymous

New member
Sorry for you feeling so poorly, but it sounds like you need to go in the hospital and have a good treatment session for a week or longer. I realize that can be difficult and interrupting to your life, but it is much needed. Your health is more important than anything else.

Take care.
 

littledebbie

New member
Oh this just blows. I totally know how you feel. I'm 26 and have yet to go through the admission experience without my Mom. I may live alone and be independant but I'm not going near a hospital without my Mom...forget it. In highschool my parents went on a trip out of country too and i got sick as a dog. So you get a bick sympathetic hug from California. Now as for what to do.......

I know it's not the smart thing to do, but knowing myself I would try to wait for my Mom to get back. i don't neccarily thing that's the best thing maybe but I'm going to work of the assumption that you're trying to wait. I totally agree about fluids. i also tend to think hot liquids help, I drink a lot of warm broth when I'm sick. I also make sure I'm really taking vitamins and try to make yourself walk a little for excerise. It will totally suck, you really are going to hate it, but there really is nothing like moving around to open up our dumb lungs and get stuff moving. Also, even though we all know this, sometimes knowing and doing are two sepearte things. When you are doing your inhalations really concentrate on taking deep breaths and even holding them for a few seconds. Sometimes I catch myself getting lazy when i do my treatments because I'm usually reading or watching tv or a little tired and the next thing I know I'm breathing through my nose!!!!!**idiot me** anyway, it makes a difference for me. Might be worth a try.

If you need to talk feel free to e-mail me...I'm always up late.
 

littledebbie

New member
Oh this just blows. I totally know how you feel. I'm 26 and have yet to go through the admission experience without my Mom. I may live alone and be independant but I'm not going near a hospital without my Mom...forget it. In highschool my parents went on a trip out of country too and i got sick as a dog. So you get a bick sympathetic hug from California. Now as for what to do.......

I know it's not the smart thing to do, but knowing myself I would try to wait for my Mom to get back. i don't neccarily thing that's the best thing maybe but I'm going to work of the assumption that you're trying to wait. I totally agree about fluids. i also tend to think hot liquids help, I drink a lot of warm broth when I'm sick. I also make sure I'm really taking vitamins and try to make yourself walk a little for excerise. It will totally suck, you really are going to hate it, but there really is nothing like moving around to open up our dumb lungs and get stuff moving. Also, even though we all know this, sometimes knowing and doing are two sepearte things. When you are doing your inhalations really concentrate on taking deep breaths and even holding them for a few seconds. Sometimes I catch myself getting lazy when i do my treatments because I'm usually reading or watching tv or a little tired and the next thing I know I'm breathing through my nose!!!!!**idiot me** anyway, it makes a difference for me. Might be worth a try.

If you need to talk feel free to e-mail me...I'm always up late.
 

jenjen2130

New member
Caitlin,

I live around that Boston area. I actually had an appoinment on Monday at MGH. There is a bug going around that is doing a number on us Cfs. What you need to do is call the your doctor explain to him or her that the head thing is gone but you chest just feels crappy. the doctor might put you on something a little stronger that Cipro. You should increase you Chest Pt if you get Chest pt. but also explain to them that your parents are away and you realy don't wanna go into the hospital is you don't have to. They my just put you something stronger and increase Chest pt and nebs.

But there is some really bad virus out there and the CF clinic at MGH is seeing a lot. I just had a really bad infection and they just put me on Clindamyin for 2 weeks and increased Chest pt.

I hope this helps and I hope you feel better soon.

Jennifer 32/w cf and pseudo
 

jenjen2130

New member
Caitlin,

I live around that Boston area. I actually had an appoinment on Monday at MGH. There is a bug going around that is doing a number on us Cfs. What you need to do is call the your doctor explain to him or her that the head thing is gone but you chest just feels crappy. the doctor might put you on something a little stronger that Cipro. You should increase you Chest Pt if you get Chest pt. but also explain to them that your parents are away and you realy don't wanna go into the hospital is you don't have to. They my just put you something stronger and increase Chest pt and nebs.

But there is some really bad virus out there and the CF clinic at MGH is seeing a lot. I just had a really bad infection and they just put me on Clindamyin for 2 weeks and increased Chest pt.

I hope this helps and I hope you feel better soon.

Jennifer 32/w cf and pseudo
 
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