do you ever get better on your own?

[sasha]

So..for the past few months I've been sick. My baseline FEV1 is usually 95, and went down to 72. So I was in the hospital for 2 weeks, with IV antibiotics for 1 week back in mid November...and my FEV went up only to 77!!! I was so frusterated...so were my doctors, so they did a bronchoscopy to check for bugs they weren't treating. At the time of the bronch, my Dr said they wanted to admit me (again) right away. I said no.
Well, I went to the clinic again today, and my fev is no better. They want me to go into the hospital again for three weeks. Well..i'm torn. It would be a Huge inconvenience right now..I'm a senior in high school, busy with college visits, exams and whatnot..and to have this setback again after it didn't help too much last time is just something I don't know what to do with. As of this moment, I told them I will stay on oral antibiotics, and they tried very hard to persuade me to go to the hospital, because my CT scans shows bad results, and the bronch also revealed a lot of secretions, and pus. I know this is bad. I do. But I feel like this is my new baseline, and I want to try to heal on my own for a while longer...I know I'm risking getting worse, and I think I will end up probably going to the hospital in a month or so. But my question is, have you ever experiened something like this? Did you refuse to go to the hospital, and did it pay off or do you regret it? Thanks for your input.

 

[sasha]

So..for the past few months I've been sick. My baseline FEV1 is usually 95, and went down to 72. So I was in the hospital for 2 weeks, with IV antibiotics for 1 week back in mid November...and my FEV went up only to 77!!! I was so frusterated...so were my doctors, so they did a bronchoscopy to check for bugs they weren't treating. At the time of the bronch, my Dr said they wanted to admit me (again) right away. I said no.
Well, I went to the clinic again today, and my fev is no better. They want me to go into the hospital again for three weeks. Well..i'm torn. It would be a Huge inconvenience right now..I'm a senior in high school, busy with college visits, exams and whatnot..and to have this setback again after it didn't help too much last time is just something I don't know what to do with. As of this moment, I told them I will stay on oral antibiotics, and they tried very hard to persuade me to go to the hospital, because my CT scans shows bad results, and the bronch also revealed a lot of secretions, and pus. I know this is bad. I do. But I feel like this is my new baseline, and I want to try to heal on my own for a while longer...I know I'm risking getting worse, and I think I will end up probably going to the hospital in a month or so. But my question is, have you ever experiened something like this? Did you refuse to go to the hospital, and did it pay off or do you regret it? Thanks for your input.

 

[JustDucky]

In the past, I have put off hospitalizations and basically bargained my way out of them...but usually I paid for it one way or another. Usually my infection would be much worse by the time I would relent and be admitted, thus adding more hospital time as well as increased time to simply recover. For the last few years, I have gone into the hospital when asked to though....a couple of really close calls opened my eyes for sure. I get so ill so quickly, I just don't have the wiggle room to try anything like oral antibiotics first just to see if I will improve. At the first sign of active infection, it is IV's for me....I have been septic a few times, with the bacteria in my lungs somehow making their way into my blood stream, so there is no more seeing if orals will do the job...it's just too much of a risk.
To be honest, I think you should bite the bullet and just go in....a drop like that is huge, there must be something going on that the doctors want to investigate. I am sure that once they figure it out and tweak things, that you should have some improvement, but I am no doctor.....maybe you are stuck at those numbers, but I would do everything possible to see if there is a reversible cause, even if it means more IV's and tests. You are so young, you don't want those numbers to become your baseline if there is a chance that they can improve.
My son is your age, a senior and going through the same things as far as school goes...it is draining even for him and he's healthy! I don't envy your position at all....please don't gamble with this, as you know, CF can get so ugly. You need to be at your healthiest to continue with your education.

I hope this helps,
Jenn 40 w/CF

 

[JustDucky]

In the past, I have put off hospitalizations and basically bargained my way out of them...but usually I paid for it one way or another. Usually my infection would be much worse by the time I would relent and be admitted, thus adding more hospital time as well as increased time to simply recover. For the last few years, I have gone into the hospital when asked to though....a couple of really close calls opened my eyes for sure. I get so ill so quickly, I just don't have the wiggle room to try anything like oral antibiotics first just to see if I will improve. At the first sign of active infection, it is IV's for me....I have been septic a few times, with the bacteria in my lungs somehow making their way into my blood stream, so there is no more seeing if orals will do the job...it's just too much of a risk.
To be honest, I think you should bite the bullet and just go in....a drop like that is huge, there must be something going on that the doctors want to investigate. I am sure that once they figure it out and tweak things, that you should have some improvement, but I am no doctor.....maybe you are stuck at those numbers, but I would do everything possible to see if there is a reversible cause, even if it means more IV's and tests. You are so young, you don't want those numbers to become your baseline if there is a chance that they can improve.
My son is your age, a senior and going through the same things as far as school goes...it is draining even for him and he's healthy! I don't envy your position at all....please don't gamble with this, as you know, CF can get so ugly. You need to be at your healthiest to continue with your education.

I hope this helps,
Jenn 40 w/CF

 

[CysticlyFIT]

Hi there!!!!

I can very well understand your frustration to your situation, -esp when you have some much going in your life as you say,- tests, school and maybe part time work ect.,I always seem to need to go in when i'm at the top of my game, or really busy with something and things are going great!!

But, you need to realize this is what CF is, its a pain, its very inconvenient even when your feeling GOOD, it sneaks up on you...

You also need to think about the future and reality,- these PFT's in the 70's might not last long if keep on this path, you could next time wind up at the dr. next vist with a 50%, then a 40% -without ever feeling a thing-!, It's a scary slop that you need to hault, NOW. If you lose more function, you will not have ANY energy to do anything school related, ect -you'll be ALREADY in the hospital.....

College exams, and school, ect, can take a break, -CF DOESN'T.

What I would do, if i were you is call my DR to admit me immediately, and even take the WHOLE MONTH of hospital stay to get your lung back to shape.

On your question, NO, CF lungs or a CF exacerbation or lung function don't ' get better on their own' if you a avoid it or don't do anything. It can actually rapidly deteriorate if nothing is done,...the symptoms may "improve" after days and days from your own immune system, but internal damage/ PFT point of view is PERMANENT.

I have never been in a situation of avoiding a hospital stay, -if my DR says, then then its done. I have asked if I can do home iv's, of course, and he lets me if he thinks a fine.

Anyway, I don't mean to sound like crazy preacher MD here, and im sure u have heard it before, but I wanted to hit you hard with how serious it is in getting CF infection under control....


PM if you'd like talk!!!, ---- I wish you very good luck and feeling better !!! xox---- <:

 

[CysticlyFIT]

Hi there!!!!

I can very well understand your frustration to your situation, -esp when you have some much going in your life as you say,- tests, school and maybe part time work ect.,I always seem to need to go in when i'm at the top of my game, or really busy with something and things are going great!!

But, you need to realize this is what CF is, its a pain, its very inconvenient even when your feeling GOOD, it sneaks up on you...

You also need to think about the future and reality,- these PFT's in the 70's might not last long if keep on this path, you could next time wind up at the dr. next vist with a 50%, then a 40% -without ever feeling a thing-!, It's a scary slop that you need to hault, NOW. If you lose more function, you will not have ANY energy to do anything school related, ect -you'll be ALREADY in the hospital.....

College exams, and school, ect, can take a break, -CF DOESN'T.

What I would do, if i were you is call my DR to admit me immediately, and even take the WHOLE MONTH of hospital stay to get your lung back to shape.

On your question, NO, CF lungs or a CF exacerbation or lung function don't ' get better on their own' if you a avoid it or don't do anything. It can actually rapidly deteriorate if nothing is done,...the symptoms may "improve" after days and days from your own immune system, but internal damage/ PFT point of view is PERMANENT.

I have never been in a situation of avoiding a hospital stay, -if my DR says, then then its done. I have asked if I can do home iv's, of course, and he lets me if he thinks a fine.

Anyway, I don't mean to sound like crazy preacher MD here, and im sure u have heard it before, but I wanted to hit you hard with how serious it is in getting CF infection under control....


PM if you'd like talk!!!, ---- I wish you very good luck and feeling better !!! xox---- <:

 

[Incomudrox]

I will say unless you are EXTREMELY adherence to your treatments and respond well to oral antibiotics and are willing to do anything it takes it's not possible to avoid the hospital. Having said that it can be done but you need complete dedication - which would usually defeat the purpose of not going to the hospital to get other things done.

If you don't give CF attention like it asks for, it will bring you down to it's level and take it from you.

I can tell you I have been in your place and made the wrong choices I am in the 20s now. Lung damage is nothing to joke around with. Good luck with whatever you choose to do!

 

[Incomudrox]

I will say unless you are EXTREMELY adherence to your treatments and respond well to oral antibiotics and are willing to do anything it takes it's not possible to avoid the hospital. Having said that it can be done but you need complete dedication - which would usually defeat the purpose of not going to the hospital to get other things done.

If you don't give CF attention like it asks for, it will bring you down to it's level and take it from you.

I can tell you I have been in your place and made the wrong choices I am in the 20s now. Lung damage is nothing to joke around with. Good luck with whatever you choose to do!

 

[beleache]

Hi Sasha,
If I were you I would listen to your drs. I think you know that already because you are saying it.. Maybe you just need someone to say "get your butt in & get better" lol Seriously though, you should listen to your body & take care of yourself # 1 ! Hope you feel better soon ..
<3 joni

 

[beleache]

Hi Sasha,
If I were you I would listen to your drs. I think you know that already because you are saying it.. Maybe you just need someone to say "get your butt in & get better" lol Seriously though, you should listen to your body & take care of yourself # 1 ! Hope you feel better soon ..
<3 joni

 

[Printer]

You are close to or 18. You are old enough to make (and suffer from) your own mistakes. The bacteria in your lungs ARE causing irreversable damage to your lungs. Not my opinion, a fact. If you continue not listening to your Dr, in a few years you will need a transplant (if you can get one) or be dead. So its your choice, put off visiting colleges for a year and go into the hospital or suffer the consequences of YOUR decision. Bill

 

[Printer]

You are close to or 18. You are old enough to make (and suffer from) your own mistakes. The bacteria in your lungs ARE causing irreversable damage to your lungs. Not my opinion, a fact. If you continue not listening to your Dr, in a few years you will need a transplant (if you can get one) or be dead. So its your choice, put off visiting colleges for a year and go into the hospital or suffer the consequences of YOUR decision. Bill

 

[nmw0615]

Hi Sasha,

I went through something a lot like you are right now. When I was in high school, I needed to be hospitalized about every three months. When I reached my senior year and things where really starting to pick up in my high school life, I would talk with my docs and plan my hospitalizations around when my campus visits and tests were. My team was wonderful at working with me and seeing when I had the free time to come in and take care of myself.

I agree with the people saying high school life can take a break, but CF doesn't. However, that doesn't mean you can't try and work with your docs to find a way to fit both lives together in a way that works for you.

 

[nmw0615]

Hi Sasha,

I went through something a lot like you are right now. When I was in high school, I needed to be hospitalized about every three months. When I reached my senior year and things where really starting to pick up in my high school life, I would talk with my docs and plan my hospitalizations around when my campus visits and tests were. My team was wonderful at working with me and seeing when I had the free time to come in and take care of myself.

I agree with the people saying high school life can take a break, but CF doesn't. However, that doesn't mean you can't try and work with your docs to find a way to fit both lives together in a way that works for you.

 

[MusicalCFGirl]

Hi Sasha!
I know everyones saying this already but: Listen to your DOCTORS!
I am a prime example: I was 18, went into university and lived in dorms and my normal pfts were in the 80s to 90s. The first week there I got sooo sick. My parents told me that we should hit the road and see the doctor, but i refused because the closest cf doctor is 5 hrs away from the city i lived in, and i knew subconsciously that they were gonna say i needed treatment and put me in the hospital. And i knew I would ultimately have to drop school since that hospital was 5 hrs away and obviously i wouldnt be able to attend classes. So i waited another 3 weeks and it got bad, even though i was doing everything "right" that you need to do for CF. I have NEVER been one to skip treatment ever and I was exercising too. So i eventually caved, went to the doctors, got admitted and spent 3 weeks in hospital, having to utlimately drop out of skool. My pfts went from 90s and 80s to the 60s.
Since then now being 21, I havent been able to jump back up to the 90s or 80s since then BECAUSE i put off hospitalization and I am currently at exactly 60% (it has recently dropped from 73 to 60%). I am actually going to take my own advice and talk to the doctors about hospitalization now, which at the moment is much more covenient for me being in skool since I know live in a city that has a Cf clinic <img src="i/expressions/face-icon-small-smile.gif" border="0">
I just want u to know sometimes it takes one error to not be able to jump back, thats the scary thing about CF. In my teens I was able to Say "Screw u CF!" and do bad things to my health but still jump back up, but since then ive learned as u get older u have to take good care of yourself bcause you might regret it and put urself back, living a short life ultimately.
Hope I could help and you can relate!

 

[MusicalCFGirl]

Hi Sasha!
I know everyones saying this already but: Listen to your DOCTORS!
I am a prime example: I was 18, went into university and lived in dorms and my normal pfts were in the 80s to 90s. The first week there I got sooo sick. My parents told me that we should hit the road and see the doctor, but i refused because the closest cf doctor is 5 hrs away from the city i lived in, and i knew subconsciously that they were gonna say i needed treatment and put me in the hospital. And i knew I would ultimately have to drop school since that hospital was 5 hrs away and obviously i wouldnt be able to attend classes. So i waited another 3 weeks and it got bad, even though i was doing everything "right" that you need to do for CF. I have NEVER been one to skip treatment ever and I was exercising too. So i eventually caved, went to the doctors, got admitted and spent 3 weeks in hospital, having to utlimately drop out of skool. My pfts went from 90s and 80s to the 60s.
Since then now being 21, I havent been able to jump back up to the 90s or 80s since then BECAUSE i put off hospitalization and I am currently at exactly 60% (it has recently dropped from 73 to 60%). I am actually going to take my own advice and talk to the doctors about hospitalization now, which at the moment is much more covenient for me being in skool since I know live in a city that has a Cf clinic <img src="i/expressions/face-icon-small-smile.gif" border="0">
I just want u to know sometimes it takes one error to not be able to jump back, thats the scary thing about CF. In my teens I was able to Say "Screw u CF!" and do bad things to my health but still jump back up, but since then ive learned as u get older u have to take good care of yourself bcause you might regret it and put urself back, living a short life ultimately.
Hope I could help and you can relate!

 

[LouLou]

If your home sick plan is not working than it's time to be get IV antibiotics. Perhaps you can do a few days at the hospital and then finish at home? In order to do this though you'll need to be 100% compliant. Are you already very compliant? Missing IV doses is not a thing to do nor is screwing up the timing or administration. Are you pretty self sufficient? Additionally you will need to do airway clearance as often as you would be in the hospital 3-4x per day. Rest lots and eat well. Do you live with your mom and dad? Personly I would take the 2-3 weeks now, get things straightened out so you can have a strong Spring and set you up for a good summer and 1st year at university.
In hindsight I wish my cf doctor my senior year of high school would have been harder on me. She kept letting me manage at home with orals. I coughed so much. I did so much damage. It all came crumbling down when I got a bad case of pneumonia my Sophomore year of college. My lung function was low 80s in high school and 70s in college and now is high 60s. I am 33 years old. If I was healthier maybe I'd be able to have another baby but its not worth the risk. Take care of yourself.

 

[LouLou]

If your home sick plan is not working than it's time to be get IV antibiotics. Perhaps you can do a few days at the hospital and then finish at home? In order to do this though you'll need to be 100% compliant. Are you already very compliant? Missing IV doses is not a thing to do nor is screwing up the timing or administration. Are you pretty self sufficient? Additionally you will need to do airway clearance as often as you would be in the hospital 3-4x per day. Rest lots and eat well. Do you live with your mom and dad? Personly I would take the 2-3 weeks now, get things straightened out so you can have a strong Spring and set you up for a good summer and 1st year at university.
In hindsight I wish my cf doctor my senior year of high school would have been harder on me. She kept letting me manage at home with orals. I coughed so much. I did so much damage. It all came crumbling down when I got a bad case of pneumonia my Sophomore year of college. My lung function was low 80s in high school and 70s in college and now is high 60s. I am 33 years old. If I was healthier maybe I'd be able to have another baby but its not worth the risk. Take care of yourself.

 

[SIcklyhatED]

hmmm, I was very similar to you last year. my baseline was in the 90s, then towards the end of junior year and all throughout senior year it just kept dropping, and dropping, and dropping. I had my very first hospital stay for IV antibiotics, over Christmas junior year, and again after graduation. I think it just goes with the whole "getting older" thing. I always thought it was just standard textbook that as you get older your lungs get worse, but I guess it can be true.

I say do it now. You wont have any more time once you're in college. I couldn't afford to take a week off to go to the hospital again, which is why I went in right before college started and will have to hold out until I graduate. Seriously, 1-2 weeks and I would miss enough class to actually get kicked out. For me, Sr. year was about getting my health ready for college so that it wouldn't be a problem.

You may be able to wheedle your way out of staying for a looooong time. My doctor knows that I'll only tolerate about 4 days, then can finish treatment at home. Compromise. It's been working for me.

 

[SIcklyhatED]

hmmm, I was very similar to you last year. my baseline was in the 90s, then towards the end of junior year and all throughout senior year it just kept dropping, and dropping, and dropping. I had my very first hospital stay for IV antibiotics, over Christmas junior year, and again after graduation. I think it just goes with the whole "getting older" thing. I always thought it was just standard textbook that as you get older your lungs get worse, but I guess it can be true.

I say do it now. You wont have any more time once you're in college. I couldn't afford to take a week off to go to the hospital again, which is why I went in right before college started and will have to hold out until I graduate. Seriously, 1-2 weeks and I would miss enough class to actually get kicked out. For me, Sr. year was about getting my health ready for college so that it wouldn't be a problem.

You may be able to wheedle your way out of staying for a looooong time. My doctor knows that I'll only tolerate about 4 days, then can finish treatment at home. Compromise. It's been working for me.