Working with Cystic Fibrosis

Skitzo · Mar 25, 2011

Hello everyone,
I'm a 23-year-old with CF who is new to the site. I'm having trouble adjusting to working life, and I wanted to get the opinions of others who deal with CF on a daily basis. All through high school and college, I started taking my i.v. antibiotics home instead of doing extended hospital stays. This always worked out great, because school mainly consists of sitting in a desk. I also went to a college that is very supportive of disabilities in general, and my professors were willing to work with me if I had to miss class. However, due to a 5-year long wait to get my SSI application approved, I never held a job during this time.

I graduated in December of '09, got my Medicaid coverage worked out, and secured what has proven to be my dream job. I have a bachelor's degree in psychology, and I currently work at a group home and a school for disturbed youth. I work with a wide range of psychological disorders in teens, from schizophrenia to ADHD to autism to explosive disorders. My job requires me to be constantly on my feet, alert, in control, and routinely dealing with physical and emotional crisis situations. I also work a lot of overtime, because if a crisis occurs at 3pm, I can't just walk out on it. My schedule involves some twelve hour shifts. I love the constant adrenaline, and my personality just does not fit with a less intense job.

My problem is, my PFTs have been worse this past year than ever. I was recently "accidentally" hospitalized for four days (went into emergency on a weekend and got stuck inpatient until Tuesday when my doctor worked). The constant rest made me crazy, but my PFTs jumped 10% in four days. Then I continued my iv meds as an outpatient and went right back to work... a week later, my PFTs were actually down 6% even though I was still on the meds.

I am currently on leave from work while finishing out my cycle. I'm just wondering if anyone else has had a problem while making the transition into the workplace, or having children, which is also a constant physical and emotional demand. Or, have you found it necessary to make sacrifices in these areas due to declining lung function? Does your body eventually adjust to the increased demands put on it, or am I doing irreparable damage here? My kids are my life, and I just can't imagine doing anything else.

Skitzo · Mar 25, 2011

Hello everyone,
I'm a 23-year-old with CF who is new to the site. I'm having trouble adjusting to working life, and I wanted to get the opinions of others who deal with CF on a daily basis. All through high school and college, I started taking my i.v. antibiotics home instead of doing extended hospital stays. This always worked out great, because school mainly consists of sitting in a desk. I also went to a college that is very supportive of disabilities in general, and my professors were willing to work with me if I had to miss class. However, due to a 5-year long wait to get my SSI application approved, I never held a job during this time.

I graduated in December of '09, got my Medicaid coverage worked out, and secured what has proven to be my dream job. I have a bachelor's degree in psychology, and I currently work at a group home and a school for disturbed youth. I work with a wide range of psychological disorders in teens, from schizophrenia to ADHD to autism to explosive disorders. My job requires me to be constantly on my feet, alert, in control, and routinely dealing with physical and emotional crisis situations. I also work a lot of overtime, because if a crisis occurs at 3pm, I can't just walk out on it. My schedule involves some twelve hour shifts. I love the constant adrenaline, and my personality just does not fit with a less intense job.

My problem is, my PFTs have been worse this past year than ever. I was recently "accidentally" hospitalized for four days (went into emergency on a weekend and got stuck inpatient until Tuesday when my doctor worked). The constant rest made me crazy, but my PFTs jumped 10% in four days. Then I continued my iv meds as an outpatient and went right back to work... a week later, my PFTs were actually down 6% even though I was still on the meds.

I am currently on leave from work while finishing out my cycle. I'm just wondering if anyone else has had a problem while making the transition into the workplace, or having children, which is also a constant physical and emotional demand. Or, have you found it necessary to make sacrifices in these areas due to declining lung function? Does your body eventually adjust to the increased demands put on it, or am I doing irreparable damage here? My kids are my life, and I just can't imagine doing anything else.

Skitzo · Mar 25, 2011

Hello everyone,
 I'm a 23-year-old with CF who is new to the site. I'm having trouble adjusting to working life, and I wanted to get the opinions of others who deal with CF on a daily basis. All through high school and college, I started taking my i.v. antibiotics home instead of doing extended hospital stays. This always worked out great, because school mainly consists of sitting in a desk. I also went to a college that is very supportive of disabilities in general, and my professors were willing to work with me if I had to miss class. However, due to a 5-year long wait to get my SSI application approved, I never held a job during this time.
 
 I graduated in December of '09, got my Medicaid coverage worked out, and secured what has proven to be my dream job. I have a bachelor's degree in psychology, and I currently work at a group home and a school for disturbed youth. I work with a wide range of psychological disorders in teens, from schizophrenia to ADHD to autism to explosive disorders. My job requires me to be constantly on my feet, alert, in control, and routinely dealing with physical and emotional crisis situations. I also work a lot of overtime, because if a crisis occurs at 3pm, I can't just walk out on it. My schedule involves some twelve hour shifts. I love the constant adrenaline, and my personality just does not fit with a less intense job.
 
 My problem is, my PFTs have been worse this past year than ever. I was recently "accidentally" hospitalized for four days (went into emergency on a weekend and got stuck inpatient until Tuesday when my doctor worked). The constant rest made me crazy, but my PFTs jumped 10% in four days. Then I continued my iv meds as an outpatient and went right back to work... a week later, my PFTs were actually down 6% even though I was still on the meds.
 
 I am currently on leave from work while finishing out my cycle. I'm just wondering if anyone else has had a problem while making the transition into the workplace, or having children, which is also a constant physical and emotional demand. Or, have you found it necessary to make sacrifices in these areas due to declining lung function? Does your body eventually adjust to the increased demands put on it, or am I doing irreparable damage here? My kids are my life, and I just can't imagine doing anything else.

tesorotiffa · Mar 25, 2011

I would say that regardless of what job you have (mine is a physically demanding job as well), you are going to have to keep things in perspective. The previous job I was at required a lot of overtime, sometimes I worked 80 hours a week but luckily never saw a difference in my health) and I felt like I HAD to work the hours they needed me to work. Luckily my new job is salary, 37.5 hours per week, but is physically demanding. What you are going to have to do is keep in mind that yes your job may be important, but you will have to make time for yourself. If you saw that big of an increase and then decrease in your PFTs primarily due to rest, then your body is telling you that you need to get a little more rest and relaxation. There's nothing wrong with that! You may wanna sit down and talk with your employers and let them know that while you understand that overtime is part of the job sometimes, you will be more useful to them in the long run if you can get a little more rest. I think the older we get, the harder (not in every case of course) our bodies are fighting against the progression of the disease which tires us out at times. I happen to be very lucky that a former employer of mine offered me a job, so there was no need to discuss health or rehash any of those things. They are very understanding when I have to go do the iv thing. The only things I've had to really "give-up" due to overall health are alcohol and staying up partying, getting no sleep! Luckily I've outgrown these things already

.

You will find that everyone will be able to tell you something they've had to sacrifice to some degree. But I think an honest conversation with your boss and maybe a note from your doctor just explaining the benefits to your health of having more you time will be a good start. Maybe on your days off or after work you can get a little non-work related exercise in as well. That has really worked wonders for me. Heck every once in a while when I'm feeling extremely tired and run down, I'll call in sick for the day and just sleep and do some extra Vest time or something. Sometimes you gotta do what you gotta do! Good luck

tesorotiffa · Mar 25, 2011

I would say that regardless of what job you have (mine is a physically demanding job as well), you are going to have to keep things in perspective. The previous job I was at required a lot of overtime, sometimes I worked 80 hours a week but luckily never saw a difference in my health) and I felt like I HAD to work the hours they needed me to work. Luckily my new job is salary, 37.5 hours per week, but is physically demanding. What you are going to have to do is keep in mind that yes your job may be important, but you will have to make time for yourself. If you saw that big of an increase and then decrease in your PFTs primarily due to rest, then your body is telling you that you need to get a little more rest and relaxation. There's nothing wrong with that! You may wanna sit down and talk with your employers and let them know that while you understand that overtime is part of the job sometimes, you will be more useful to them in the long run if you can get a little more rest. I think the older we get, the harder (not in every case of course) our bodies are fighting against the progression of the disease which tires us out at times. I happen to be very lucky that a former employer of mine offered me a job, so there was no need to discuss health or rehash any of those things. They are very understanding when I have to go do the iv thing. The only things I've had to really "give-up" due to overall health are alcohol and staying up partying, getting no sleep! Luckily I've outgrown these things already

.

You will find that everyone will be able to tell you something they've had to sacrifice to some degree. But I think an honest conversation with your boss and maybe a note from your doctor just explaining the benefits to your health of having more you time will be a good start. Maybe on your days off or after work you can get a little non-work related exercise in as well. That has really worked wonders for me. Heck every once in a while when I'm feeling extremely tired and run down, I'll call in sick for the day and just sleep and do some extra Vest time or something. Sometimes you gotta do what you gotta do! Good luck

tesorotiffa · Mar 25, 2011

I would say that regardless of what job you have (mine is a physically demanding job as well), you are going to have to keep things in perspective. The previous job I was at required a lot of overtime, sometimes I worked 80 hours a week but luckily never saw a difference in my health) and I felt like I HAD to work the hours they needed me to work. Luckily my new job is salary, 37.5 hours per week, but is physically demanding. What you are going to have to do is keep in mind that yes your job may be important, but you will have to make time for yourself. If you saw that big of an increase and then decrease in your PFTs primarily due to rest, then your body is telling you that you need to get a little more rest and relaxation. There's nothing wrong with that! You may wanna sit down and talk with your employers and let them know that while you understand that overtime is part of the job sometimes, you will be more useful to them in the long run if you can get a little more rest. I think the older we get, the harder (not in every case of course) our bodies are fighting against the progression of the disease which tires us out at times. I happen to be very lucky that a former employer of mine offered me a job, so there was no need to discuss health or rehash any of those things. They are very understanding when I have to go do the iv thing. The only things I've had to really "give-up" due to overall health are alcohol and staying up partying, getting no sleep! Luckily I've outgrown these things already

.
 
 You will find that everyone will be able to tell you something they've had to sacrifice to some degree. But I think an honest conversation with your boss and maybe a note from your doctor just explaining the benefits to your health of having more you time will be a good start. Maybe on your days off or after work you can get a little non-work related exercise in as well. That has really worked wonders for me. Heck every once in a while when I'm feeling extremely tired and run down, I'll call in sick for the day and just sleep and do some extra Vest time or something. Sometimes you gotta do what you gotta do! Good luck

mamaScarlett · Mar 26, 2011

I also have a demanding job (mom). Adjusting to life with my 1st child took a while. (now I'm re-adjusting to life with 2 kdis) It took trying new things, and alot more work for me to be healthy. More discipline, more routine, more structure. And I had to let go of some things too. When you're a parent, you don't get a lunch hour, or a day off.
But I had to leave off some non essential activities. Some social things had to go, some of the extra volunteer work I had so loved to do had to let go, personal time. Also I had to stick to a schedule.
I find with myself that there is usually an underlying cause if my health is slipping. The problem really isn't that I am on my feet all day or running after a toddler. (like you are too in a way) Usually, its that my nutrition has slipped back and I'm rushing too much. Eating take out or junk food too much. Skipping chest pt here and there, and thats catching up to me. Or even emotionally not giving myself a break if I need it.
Then I re-evaluate, and get back on track.
If you are, like me, on your feet all day, running around, then you are burning lots of calories. Your poor body needs nutrition. Not just calories, but real nutrition. Adjusting that could go a LONG way. And sacrificing some things in your schedule so that you always get your chest pt will also help.
But I am not one of those people that believes that you can do or have 'it all'. Whatever 'it all' is. Something has to give.
I'm sure if you look in your day to day life you'll find things that could give, so you could have more time to care for your health. While keeping the job you love. I wouldn't give up the job I love (mommying) for anything. But I have to work darn hard for it.

mamaScarlett · Mar 26, 2011

I also have a demanding job (mom). Adjusting to life with my 1st child took a while. (now I'm re-adjusting to life with 2 kdis) It took trying new things, and alot more work for me to be healthy. More discipline, more routine, more structure. And I had to let go of some things too. When you're a parent, you don't get a lunch hour, or a day off.
But I had to leave off some non essential activities. Some social things had to go, some of the extra volunteer work I had so loved to do had to let go, personal time. Also I had to stick to a schedule.
I find with myself that there is usually an underlying cause if my health is slipping. The problem really isn't that I am on my feet all day or running after a toddler. (like you are too in a way) Usually, its that my nutrition has slipped back and I'm rushing too much. Eating take out or junk food too much. Skipping chest pt here and there, and thats catching up to me. Or even emotionally not giving myself a break if I need it.
Then I re-evaluate, and get back on track.
If you are, like me, on your feet all day, running around, then you are burning lots of calories. Your poor body needs nutrition. Not just calories, but real nutrition. Adjusting that could go a LONG way. And sacrificing some things in your schedule so that you always get your chest pt will also help.
But I am not one of those people that believes that you can do or have 'it all'. Whatever 'it all' is. Something has to give.
I'm sure if you look in your day to day life you'll find things that could give, so you could have more time to care for your health. While keeping the job you love. I wouldn't give up the job I love (mommying) for anything. But I have to work darn hard for it.

mamaScarlett · Mar 26, 2011

I also have a demanding job (mom). Adjusting to life with my 1st child took a while. (now I'm re-adjusting to life with 2 kdis) It took trying new things, and alot more work for me to be healthy. More discipline, more routine, more structure. And I had to let go of some things too. When you're a parent, you don't get a lunch hour, or a day off.
 But I had to leave off some non essential activities. Some social things had to go, some of the extra volunteer work I had so loved to do had to let go, personal time. Also I had to stick to a schedule.
 I find with myself that there is usually an underlying cause if my health is slipping. The problem really isn't that I am on my feet all day or running after a toddler. (like you are too in a way) Usually, its that my nutrition has slipped back and I'm rushing too much. Eating take out or junk food too much. Skipping chest pt here and there, and thats catching up to me. Or even emotionally not giving myself a break if I need it.
 Then I re-evaluate, and get back on track.
 If you are, like me, on your feet all day, running around, then you are burning lots of calories. Your poor body needs nutrition. Not just calories, but real nutrition. Adjusting that could go a LONG way. And sacrificing some things in your schedule so that you always get your chest pt will also help.
 But I am not one of those people that believes that you can do or have 'it all'. Whatever 'it all' is. Something has to give.
 I'm sure if you look in your day to day life you'll find things that could give, so you could have more time to care for your health. While keeping the job you love. I wouldn't give up the job I love (mommying) for anything. But I have to work darn hard for it.

Jeana · Mar 26, 2011

Two things--

One, are the antibiotics still working? I have had an increase and then drop and found that I became resistant to a drug.

Two, when you leave the hospital, are you still maintaining all of your treatments, or letting some of it (PT, for example) slide. I know that when I leave the hospital I don't use my Vest as often as I get PT at the hospital. (Or is it truly that you need the rest that the hospital provided?)

Just some things to consider. Hope things work out for you! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jeana · Mar 26, 2011

Two things--

One, are the antibiotics still working? I have had an increase and then drop and found that I became resistant to a drug.

Two, when you leave the hospital, are you still maintaining all of your treatments, or letting some of it (PT, for example) slide. I know that when I leave the hospital I don't use my Vest as often as I get PT at the hospital. (Or is it truly that you need the rest that the hospital provided?)

Just some things to consider. Hope things work out for you! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jeana · Mar 26, 2011

Two things--
 
 One, are the antibiotics still working? I have had an increase and then drop and found that I became resistant to a drug.
 
 Two, when you leave the hospital, are you still maintaining all of your treatments, or letting some of it (PT, for example) slide. I know that when I leave the hospital I don't use my Vest as often as I get PT at the hospital. (Or is it truly that you need the rest that the hospital provided?)
 
 Just some things to consider. Hope things work out for you! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ldude916 · Mar 26, 2011

After college, I was in your situation...working up to 60 hours a week, not getting enough sleep, sometimes skipping PT, not eating right, because I felt fine and really wanted to impress the people at my job and thought that these hours were what was demanded of me to prove I was a competent associate. I was between a rock and a hard place, and I chose my job over my health...

However, after about 4 years of this, it really took a toll on my health. I definitely contribute these crazy hours to losing 40% lung function over the last 5 years. If I had to go back and do it over again, I would totally tone things down. If you don't maintain your health, then you are really risking your future. I am now waiting for a lung transplant and on disability leave from said job.

Over the past 4 years, my job has been very understanding of my condition because I proved that I was an exceptional associate during the 30 hours a week that I was working. I decided to go part time about 3 years ago and I was such a good decision! The balance between work and taking care of myself was so much better and I felt I could offer so much more productivity to my job because of it, and they saw that commitment. I'm not saying you need to go part time, but 12 hour shifts are way too much in my opinion to be doing daily! Eventually that will catch up with you (as you've seen by your loss of 10% function). I don't think your body will eventually "adjust" to your schedule, I think you need to adjust to what your body is telling you because you could be doing irreversible damage.

While these kids are your life, and I admire that about you, if you don't maintain your health, in a few years you won't be able to be there for them. Maybe thinking in that perspective will help you justify and understand why dialing back your hours per day now will help you stay as productive as you can in the future!

Before talking to your HR department about this, I would suggest contacting the CF Legal team that is supported by CFF.org. They can help you understand your rights under the American Disabilities Act and help you make sure you're having the right conversations with your employer.

I wish you all the best and congratulations on finding work that you love to do =)

Ldude916 · Mar 26, 2011

After college, I was in your situation...working up to 60 hours a week, not getting enough sleep, sometimes skipping PT, not eating right, because I felt fine and really wanted to impress the people at my job and thought that these hours were what was demanded of me to prove I was a competent associate. I was between a rock and a hard place, and I chose my job over my health...

However, after about 4 years of this, it really took a toll on my health. I definitely contribute these crazy hours to losing 40% lung function over the last 5 years. If I had to go back and do it over again, I would totally tone things down. If you don't maintain your health, then you are really risking your future. I am now waiting for a lung transplant and on disability leave from said job.

Over the past 4 years, my job has been very understanding of my condition because I proved that I was an exceptional associate during the 30 hours a week that I was working. I decided to go part time about 3 years ago and I was such a good decision! The balance between work and taking care of myself was so much better and I felt I could offer so much more productivity to my job because of it, and they saw that commitment. I'm not saying you need to go part time, but 12 hour shifts are way too much in my opinion to be doing daily! Eventually that will catch up with you (as you've seen by your loss of 10% function). I don't think your body will eventually "adjust" to your schedule, I think you need to adjust to what your body is telling you because you could be doing irreversible damage.

While these kids are your life, and I admire that about you, if you don't maintain your health, in a few years you won't be able to be there for them. Maybe thinking in that perspective will help you justify and understand why dialing back your hours per day now will help you stay as productive as you can in the future!

Before talking to your HR department about this, I would suggest contacting the CF Legal team that is supported by CFF.org. They can help you understand your rights under the American Disabilities Act and help you make sure you're having the right conversations with your employer.

I wish you all the best and congratulations on finding work that you love to do =)

Ldude916 · Mar 26, 2011

After college, I was in your situation...working up to 60 hours a week, not getting enough sleep, sometimes skipping PT, not eating right, because I felt fine and really wanted to impress the people at my job and thought that these hours were what was demanded of me to prove I was a competent associate. I was between a rock and a hard place, and I chose my job over my health...
 
 However, after about 4 years of this, it really took a toll on my health. I definitely contribute these crazy hours to losing 40% lung function over the last 5 years. If I had to go back and do it over again, I would totally tone things down. If you don't maintain your health, then you are really risking your future. I am now waiting for a lung transplant and on disability leave from said job.
 
 Over the past 4 years, my job has been very understanding of my condition because I proved that I was an exceptional associate during the 30 hours a week that I was working. I decided to go part time about 3 years ago and I was such a good decision! The balance between work and taking care of myself was so much better and I felt I could offer so much more productivity to my job because of it, and they saw that commitment. I'm not saying you need to go part time, but 12 hour shifts are way too much in my opinion to be doing daily! Eventually that will catch up with you (as you've seen by your loss of 10% function). I don't think your body will eventually "adjust" to your schedule, I think you need to adjust to what your body is telling you because you could be doing irreversible damage.
 
 While these kids are your life, and I admire that about you, if you don't maintain your health, in a few years you won't be able to be there for them. Maybe thinking in that perspective will help you justify and understand why dialing back your hours per day now will help you stay as productive as you can in the future!
 
 Before talking to your HR department about this, I would suggest contacting the CF Legal team that is supported by CFF.org. They can help you understand your rights under the American Disabilities Act and help you make sure you're having the right conversations with your employer.
 
 I wish you all the best and congratulations on finding work that you love to do =)

Working with Cystic Fibrosis

Skitzo

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Skitzo

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Skitzo

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tesorotiffa

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tesorotiffa

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tesorotiffa

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mamaScarlett

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mamaScarlett

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mamaScarlett

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Jeana

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Jeana

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Jeana

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Ldude916

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Ldude916

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Ldude916

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