College life with CF

dillman

New member
Thank you all for the great info. We have always been very open with everyone about his CF so he is really comfortable about it with friends and family and fortunately they've always been very supportive of him. But...when it comes to his treatments, he's never been one to do them in front of others. The advice about letting him do things on his own is good to know. He does do treatments on his own at times and then cleans the nebs etc. so I'm glad to hear that that will help him. Also, thanks for the advice about contacting disability services...I never knew that existed. I will also search the site for more great info. Thanks a bunch!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

dillman

New member
Thank you all for the great info. We have always been very open with everyone about his CF so he is really comfortable about it with friends and family and fortunately they've always been very supportive of him. But...when it comes to his treatments, he's never been one to do them in front of others. The advice about letting him do things on his own is good to know. He does do treatments on his own at times and then cleans the nebs etc. so I'm glad to hear that that will help him. Also, thanks for the advice about contacting disability services...I never knew that existed. I will also search the site for more great info. Thanks a bunch!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

dillman

New member
Thank you all for the great info. We have always been very open with everyone about his CF so he is really comfortable about it with friends and family and fortunately they've always been very supportive of him. But...when it comes to his treatments, he's never been one to do them in front of others. The advice about letting him do things on his own is good to know. He does do treatments on his own at times and then cleans the nebs etc. so I'm glad to hear that that will help him. Also, thanks for the advice about contacting disability services...I never knew that existed. I will also search the site for more great info. Thanks a bunch!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

dillman

New member
Thank you all for the great info. We have always been very open with everyone about his CF so he is really comfortable about it with friends and family and fortunately they've always been very supportive of him. But...when it comes to his treatments, he's never been one to do them in front of others. The advice about letting him do things on his own is good to know. He does do treatments on his own at times and then cleans the nebs etc. so I'm glad to hear that that will help him. Also, thanks for the advice about contacting disability services...I never knew that existed. I will also search the site for more great info. Thanks a bunch!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

dillman

New member
Thank you all for the great info. We have always been very open with everyone about his CF so he is really comfortable about it with friends and family and fortunately they've always been very supportive of him. But...when it comes to his treatments, he's never been one to do them in front of others. The advice about letting him do things on his own is good to know. He does do treatments on his own at times and then cleans the nebs etc. so I'm glad to hear that that will help him. Also, thanks for the advice about contacting disability services...I never knew that existed. I will also search the site for more great info. Thanks a bunch!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

NYCLawGirl

New member
I went to college literally across the country from where my parents lived and was in a dorm for 2 years and in a house shared with friends off campus for the second two. I loved every minute of it (enough so that I ended up going on to grad school as well!) and got a great education - I am SOOO grateful to my parents for being so supportive on this issue!

My parents did a lot of what has been suggested above. By the time I was a senior in college I was taking myself to my own clinic appointments, managing my own RX refills, and handling all my meds. I cleaned my nebs using a hotplate and boilng, coupled with a vinegar solution. My parents did come with me when they dropped me off to talk to disability services, and we got a special concession for me to have a car on campus for my 1st year, which I needed for prescriptions, food, etc. Man was I popular with the other freshmen <img src="i/expressions/face-icon-small-wink.gif" border="0"> Also I got a special pass to park the car in any lot on campus so I could ensure that I didn't have to walk too far if I was sick.

My college (Emory University) has a CF center on campus. At the time I went there it was just peds, but it has since incorporated an adult center too. Without getting into details, it turned out the ped clinic there was not a good fit for me. After I realized that (1st year), I pretty much stuck with my doctor from Denver and would always do tune-ups, etc when I came home for breaks - normally once in Dec. and once in summer. My doctor got me a handheld FEV1 meter that connected to a computer and automatically sent him the results. And of course I maintained a relationship with the CF center at Emory for emergency visits.

All the above advice from other posters is great. I would not change my college experience once bit if I had the chance. Yes, I made a couple of mistakes along the way with managing my health, but the fact of the matter is living away from home taught me to manage my illness on my own, and being able to go to the college of my choice and live with all the other students really reinforced for me that CF is something you live with, not something that you have to give up life for. I can almost guarantee that I never would have pushed myself so hard to go to law school and get my dream job if my parents hadn't been so encouraging about college, so kudos to you for being so on top of this topic! Your son will DEFINTELY thank you for your support!
 

NYCLawGirl

New member
I went to college literally across the country from where my parents lived and was in a dorm for 2 years and in a house shared with friends off campus for the second two. I loved every minute of it (enough so that I ended up going on to grad school as well!) and got a great education - I am SOOO grateful to my parents for being so supportive on this issue!

My parents did a lot of what has been suggested above. By the time I was a senior in college I was taking myself to my own clinic appointments, managing my own RX refills, and handling all my meds. I cleaned my nebs using a hotplate and boilng, coupled with a vinegar solution. My parents did come with me when they dropped me off to talk to disability services, and we got a special concession for me to have a car on campus for my 1st year, which I needed for prescriptions, food, etc. Man was I popular with the other freshmen <img src="i/expressions/face-icon-small-wink.gif" border="0"> Also I got a special pass to park the car in any lot on campus so I could ensure that I didn't have to walk too far if I was sick.

My college (Emory University) has a CF center on campus. At the time I went there it was just peds, but it has since incorporated an adult center too. Without getting into details, it turned out the ped clinic there was not a good fit for me. After I realized that (1st year), I pretty much stuck with my doctor from Denver and would always do tune-ups, etc when I came home for breaks - normally once in Dec. and once in summer. My doctor got me a handheld FEV1 meter that connected to a computer and automatically sent him the results. And of course I maintained a relationship with the CF center at Emory for emergency visits.

All the above advice from other posters is great. I would not change my college experience once bit if I had the chance. Yes, I made a couple of mistakes along the way with managing my health, but the fact of the matter is living away from home taught me to manage my illness on my own, and being able to go to the college of my choice and live with all the other students really reinforced for me that CF is something you live with, not something that you have to give up life for. I can almost guarantee that I never would have pushed myself so hard to go to law school and get my dream job if my parents hadn't been so encouraging about college, so kudos to you for being so on top of this topic! Your son will DEFINTELY thank you for your support!
 

NYCLawGirl

New member
I went to college literally across the country from where my parents lived and was in a dorm for 2 years and in a house shared with friends off campus for the second two. I loved every minute of it (enough so that I ended up going on to grad school as well!) and got a great education - I am SOOO grateful to my parents for being so supportive on this issue!

My parents did a lot of what has been suggested above. By the time I was a senior in college I was taking myself to my own clinic appointments, managing my own RX refills, and handling all my meds. I cleaned my nebs using a hotplate and boilng, coupled with a vinegar solution. My parents did come with me when they dropped me off to talk to disability services, and we got a special concession for me to have a car on campus for my 1st year, which I needed for prescriptions, food, etc. Man was I popular with the other freshmen <img src="i/expressions/face-icon-small-wink.gif" border="0"> Also I got a special pass to park the car in any lot on campus so I could ensure that I didn't have to walk too far if I was sick.

My college (Emory University) has a CF center on campus. At the time I went there it was just peds, but it has since incorporated an adult center too. Without getting into details, it turned out the ped clinic there was not a good fit for me. After I realized that (1st year), I pretty much stuck with my doctor from Denver and would always do tune-ups, etc when I came home for breaks - normally once in Dec. and once in summer. My doctor got me a handheld FEV1 meter that connected to a computer and automatically sent him the results. And of course I maintained a relationship with the CF center at Emory for emergency visits.

All the above advice from other posters is great. I would not change my college experience once bit if I had the chance. Yes, I made a couple of mistakes along the way with managing my health, but the fact of the matter is living away from home taught me to manage my illness on my own, and being able to go to the college of my choice and live with all the other students really reinforced for me that CF is something you live with, not something that you have to give up life for. I can almost guarantee that I never would have pushed myself so hard to go to law school and get my dream job if my parents hadn't been so encouraging about college, so kudos to you for being so on top of this topic! Your son will DEFINTELY thank you for your support!
 

NYCLawGirl

New member
I went to college literally across the country from where my parents lived and was in a dorm for 2 years and in a house shared with friends off campus for the second two. I loved every minute of it (enough so that I ended up going on to grad school as well!) and got a great education - I am SOOO grateful to my parents for being so supportive on this issue!

My parents did a lot of what has been suggested above. By the time I was a senior in college I was taking myself to my own clinic appointments, managing my own RX refills, and handling all my meds. I cleaned my nebs using a hotplate and boilng, coupled with a vinegar solution. My parents did come with me when they dropped me off to talk to disability services, and we got a special concession for me to have a car on campus for my 1st year, which I needed for prescriptions, food, etc. Man was I popular with the other freshmen <img src="i/expressions/face-icon-small-wink.gif" border="0"> Also I got a special pass to park the car in any lot on campus so I could ensure that I didn't have to walk too far if I was sick.

My college (Emory University) has a CF center on campus. At the time I went there it was just peds, but it has since incorporated an adult center too. Without getting into details, it turned out the ped clinic there was not a good fit for me. After I realized that (1st year), I pretty much stuck with my doctor from Denver and would always do tune-ups, etc when I came home for breaks - normally once in Dec. and once in summer. My doctor got me a handheld FEV1 meter that connected to a computer and automatically sent him the results. And of course I maintained a relationship with the CF center at Emory for emergency visits.

All the above advice from other posters is great. I would not change my college experience once bit if I had the chance. Yes, I made a couple of mistakes along the way with managing my health, but the fact of the matter is living away from home taught me to manage my illness on my own, and being able to go to the college of my choice and live with all the other students really reinforced for me that CF is something you live with, not something that you have to give up life for. I can almost guarantee that I never would have pushed myself so hard to go to law school and get my dream job if my parents hadn't been so encouraging about college, so kudos to you for being so on top of this topic! Your son will DEFINTELY thank you for your support!
 

NYCLawGirl

New member
I went to college literally across the country from where my parents lived and was in a dorm for 2 years and in a house shared with friends off campus for the second two. I loved every minute of it (enough so that I ended up going on to grad school as well!) and got a great education - I am SOOO grateful to my parents for being so supportive on this issue!
<br />
<br />My parents did a lot of what has been suggested above. By the time I was a senior in college I was taking myself to my own clinic appointments, managing my own RX refills, and handling all my meds. I cleaned my nebs using a hotplate and boilng, coupled with a vinegar solution. My parents did come with me when they dropped me off to talk to disability services, and we got a special concession for me to have a car on campus for my 1st year, which I needed for prescriptions, food, etc. Man was I popular with the other freshmen <img src="i/expressions/face-icon-small-wink.gif" border="0"> Also I got a special pass to park the car in any lot on campus so I could ensure that I didn't have to walk too far if I was sick.
<br />
<br />My college (Emory University) has a CF center on campus. At the time I went there it was just peds, but it has since incorporated an adult center too. Without getting into details, it turned out the ped clinic there was not a good fit for me. After I realized that (1st year), I pretty much stuck with my doctor from Denver and would always do tune-ups, etc when I came home for breaks - normally once in Dec. and once in summer. My doctor got me a handheld FEV1 meter that connected to a computer and automatically sent him the results. And of course I maintained a relationship with the CF center at Emory for emergency visits.
<br />
<br />All the above advice from other posters is great. I would not change my college experience once bit if I had the chance. Yes, I made a couple of mistakes along the way with managing my health, but the fact of the matter is living away from home taught me to manage my illness on my own, and being able to go to the college of my choice and live with all the other students really reinforced for me that CF is something you live with, not something that you have to give up life for. I can almost guarantee that I never would have pushed myself so hard to go to law school and get my dream job if my parents hadn't been so encouraging about college, so kudos to you for being so on top of this topic! Your son will DEFINTELY thank you for your support!
 

dillman

New member
NYCLawGirl...Thanks for the great info!!

I love hearing what you've all had to say. We're a little nervous about this next step. Our son is very responsible but we still have some worries. It's hard because we want him to be independent but we also want to help him anyway we can. Although we know letting him become an independent adult is the best thing we can do, it's hard to let go!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

It's so good to hear that you've all done well in college and things will work out for him no matter what he decides!

Thanks again!
 

dillman

New member
NYCLawGirl...Thanks for the great info!!

I love hearing what you've all had to say. We're a little nervous about this next step. Our son is very responsible but we still have some worries. It's hard because we want him to be independent but we also want to help him anyway we can. Although we know letting him become an independent adult is the best thing we can do, it's hard to let go!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

It's so good to hear that you've all done well in college and things will work out for him no matter what he decides!

Thanks again!
 

dillman

New member
NYCLawGirl...Thanks for the great info!!

I love hearing what you've all had to say. We're a little nervous about this next step. Our son is very responsible but we still have some worries. It's hard because we want him to be independent but we also want to help him anyway we can. Although we know letting him become an independent adult is the best thing we can do, it's hard to let go!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

It's so good to hear that you've all done well in college and things will work out for him no matter what he decides!

Thanks again!
 

dillman

New member
NYCLawGirl...Thanks for the great info!!

I love hearing what you've all had to say. We're a little nervous about this next step. Our son is very responsible but we still have some worries. It's hard because we want him to be independent but we also want to help him anyway we can. Although we know letting him become an independent adult is the best thing we can do, it's hard to let go!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

It's so good to hear that you've all done well in college and things will work out for him no matter what he decides!

Thanks again!
 

dillman

New member
NYCLawGirl...Thanks for the great info!!
<br />
<br />I love hearing what you've all had to say. We're a little nervous about this next step. Our son is very responsible but we still have some worries. It's hard because we want him to be independent but we also want to help him anyway we can. Although we know letting him become an independent adult is the best thing we can do, it's hard to let go!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />It's so good to hear that you've all done well in college and things will work out for him no matter what he decides!
<br />
<br />Thanks again!
<br />
 
B

bethylove

Guest
I too, tried the whole college thing. My first year I lived with two people I didn't know. I told them I had CF and explained what it was, what I needed to do for it, showed them my nebs, etc. I had no problem doing them in front of my roommates or other people, I even ran IV's my freshman year, stocking up the mini-fridge.

there were three times however, that when doing pulmozyme and tobi right in a row, that I set off my fire alarm/smoke detector! That was a little embarrassing, seeing as it only set off my individual one and MY RA wasn't on, so took a lot of explanation to the current RA. After that happened I talked to my RA about having a separate room 2x day without a smoke detector, they came up with some ideas, but I never really used them b/c I wasn't very compliant.

College life really wasn't the best fit for me, so I transfered out of the University and ended up doing an online program which I love. So that might be a helpful tool in your toolbelt... because sometimes college just isn't the right fit for us (I know it wasn't for me!) so online universities offer much more privacy and independence. I personally love it, and I wish I had thought of it earlier. Plus it is a lot cheaper, and is self paced. So reassuring him with other, alternative options is always a good thing, because I know I felt pressured to stay in school for health insurance reasons -- so If dorm life doesn't work out, or the whole university thing, there's surely a back up out there for him!!

I wish him the best of luck!!
 
B

bethylove

Guest
I too, tried the whole college thing. My first year I lived with two people I didn't know. I told them I had CF and explained what it was, what I needed to do for it, showed them my nebs, etc. I had no problem doing them in front of my roommates or other people, I even ran IV's my freshman year, stocking up the mini-fridge.

there were three times however, that when doing pulmozyme and tobi right in a row, that I set off my fire alarm/smoke detector! That was a little embarrassing, seeing as it only set off my individual one and MY RA wasn't on, so took a lot of explanation to the current RA. After that happened I talked to my RA about having a separate room 2x day without a smoke detector, they came up with some ideas, but I never really used them b/c I wasn't very compliant.

College life really wasn't the best fit for me, so I transfered out of the University and ended up doing an online program which I love. So that might be a helpful tool in your toolbelt... because sometimes college just isn't the right fit for us (I know it wasn't for me!) so online universities offer much more privacy and independence. I personally love it, and I wish I had thought of it earlier. Plus it is a lot cheaper, and is self paced. So reassuring him with other, alternative options is always a good thing, because I know I felt pressured to stay in school for health insurance reasons -- so If dorm life doesn't work out, or the whole university thing, there's surely a back up out there for him!!

I wish him the best of luck!!
 
B

bethylove

Guest
I too, tried the whole college thing. My first year I lived with two people I didn't know. I told them I had CF and explained what it was, what I needed to do for it, showed them my nebs, etc. I had no problem doing them in front of my roommates or other people, I even ran IV's my freshman year, stocking up the mini-fridge.

there were three times however, that when doing pulmozyme and tobi right in a row, that I set off my fire alarm/smoke detector! That was a little embarrassing, seeing as it only set off my individual one and MY RA wasn't on, so took a lot of explanation to the current RA. After that happened I talked to my RA about having a separate room 2x day without a smoke detector, they came up with some ideas, but I never really used them b/c I wasn't very compliant.

College life really wasn't the best fit for me, so I transfered out of the University and ended up doing an online program which I love. So that might be a helpful tool in your toolbelt... because sometimes college just isn't the right fit for us (I know it wasn't for me!) so online universities offer much more privacy and independence. I personally love it, and I wish I had thought of it earlier. Plus it is a lot cheaper, and is self paced. So reassuring him with other, alternative options is always a good thing, because I know I felt pressured to stay in school for health insurance reasons -- so If dorm life doesn't work out, or the whole university thing, there's surely a back up out there for him!!

I wish him the best of luck!!
 
B

bethylove

Guest
I too, tried the whole college thing. My first year I lived with two people I didn't know. I told them I had CF and explained what it was, what I needed to do for it, showed them my nebs, etc. I had no problem doing them in front of my roommates or other people, I even ran IV's my freshman year, stocking up the mini-fridge.

there were three times however, that when doing pulmozyme and tobi right in a row, that I set off my fire alarm/smoke detector! That was a little embarrassing, seeing as it only set off my individual one and MY RA wasn't on, so took a lot of explanation to the current RA. After that happened I talked to my RA about having a separate room 2x day without a smoke detector, they came up with some ideas, but I never really used them b/c I wasn't very compliant.

College life really wasn't the best fit for me, so I transfered out of the University and ended up doing an online program which I love. So that might be a helpful tool in your toolbelt... because sometimes college just isn't the right fit for us (I know it wasn't for me!) so online universities offer much more privacy and independence. I personally love it, and I wish I had thought of it earlier. Plus it is a lot cheaper, and is self paced. So reassuring him with other, alternative options is always a good thing, because I know I felt pressured to stay in school for health insurance reasons -- so If dorm life doesn't work out, or the whole university thing, there's surely a back up out there for him!!

I wish him the best of luck!!
 
B

bethylove

Guest
I too, tried the whole college thing. My first year I lived with two people I didn't know. I told them I had CF and explained what it was, what I needed to do for it, showed them my nebs, etc. I had no problem doing them in front of my roommates or other people, I even ran IV's my freshman year, stocking up the mini-fridge.
<br />
<br />there were three times however, that when doing pulmozyme and tobi right in a row, that I set off my fire alarm/smoke detector! That was a little embarrassing, seeing as it only set off my individual one and MY RA wasn't on, so took a lot of explanation to the current RA. After that happened I talked to my RA about having a separate room 2x day without a smoke detector, they came up with some ideas, but I never really used them b/c I wasn't very compliant.
<br />
<br />College life really wasn't the best fit for me, so I transfered out of the University and ended up doing an online program which I love. So that might be a helpful tool in your toolbelt... because sometimes college just isn't the right fit for us (I know it wasn't for me!) so online universities offer much more privacy and independence. I personally love it, and I wish I had thought of it earlier. Plus it is a lot cheaper, and is self paced. So reassuring him with other, alternative options is always a good thing, because I know I felt pressured to stay in school for health insurance reasons -- so If dorm life doesn't work out, or the whole university thing, there's surely a back up out there for him!!
<br />
<br />I wish him the best of luck!!
 
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