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Feeling overwhelmed

G

gch25ily

New member
Hi! I'm 16 w/CF and I've been sooo overwhelmed lately. I had a really hard year (4 hospital stays, 6 rounds of IVs, got a feeding tube and wear oxygen at night now. ugh) and my lung function has dropped from the 70s down to 40%. I can't skip any treatments or I feel bad all day and I get out of breath even doing simple things like walking up stairs (sooo embarassing especially when people comment) 

It seems like suddenly my whole life revolves around CF and being sick and meds and exercise and hospitals. My doctor even said we might want to start thinking about transplant. JEEZ! I was completely unprepared for that and it's been on my mind a lot. Am I really not going to get better without going through that whole process? 

On top of all this CF stress I have finals to think about (even more stressful cause I missed so much school) I want to hang out with my friends but I usually say no because I have nooooo energy it seems like. I'm always tired and cranky and I cry at every little thing. I just want to feel better already and for things to go back to normal. I'm not sure if this was actually a question or just venting haha but has anyone else gone thru something like this? How am I supposed to handle everything?  
 
G

gch25ily

New member
Hi! I'm 16 w/CF and I've been sooo overwhelmed lately. I had a really hard year (4 hospital stays, 6 rounds of IVs, got a feeding tube and wear oxygen at night now. ugh) and my lung function has dropped from the 70s down to 40%. I can't skip any treatments or I feel bad all day and I get out of breath even doing simple things like walking up stairs (sooo embarassing especially when people comment) 

It seems like suddenly my whole life revolves around CF and being sick and meds and exercise and hospitals. My doctor even said we might want to start thinking about transplant. JEEZ! I was completely unprepared for that and it's been on my mind a lot. Am I really not going to get better without going through that whole process? 

On top of all this CF stress I have finals to think about (even more stressful cause I missed so much school) I want to hang out with my friends but I usually say no because I have nooooo energy it seems like. I'm always tired and cranky and I cry at every little thing. I just want to feel better already and for things to go back to normal. I'm not sure if this was actually a question or just venting haha but has anyone else gone thru something like this? How am I supposed to handle everything?  
 
G

gch25ily

New member
Hi! I'm 16 w/CF and I've been sooo overwhelmed lately. I had a really hard year (4 hospital stays, 6 rounds of IVs, got a feeding tube and wear oxygen at night now. ugh) and my lung function has dropped from the 70s down to 40%. I can't skip any treatments or I feel bad all day and I get out of breath even doing simple things like walking up stairs (sooo embarassing especially when people comment) 
<br />
<br />It seems like suddenly my whole life revolves around CF and being sick and meds and exercise and hospitals. My doctor even said we might want to start thinking about transplant. JEEZ! I was completely unprepared for that and it's been on my mind a lot. Am I really not going to get better without going through that whole process? 
<br />
<br />On top of all this CF stress I have finals to think about (even more stressful cause I missed so much school) I want to hang out with my friends but I usually say no because I have nooooo energy it seems like. I'm always tired and cranky and I cry at every little thing. I just want to feel better already and for things to go back to normal. I'm not sure if this was actually a question or just venting haha but has anyone else gone thru something like this? How am I supposed to handle everything?  
 
L

Liza

New member
Hi, I am so sorry you are having such a hard year. My oldest daughter went through a rough year her sophomore year in HS too. She went through several hospital stays (she wouldn't do home IV), used only a picc line and eventually had to get a port (she was adamently against it but had no choice because her veins were shot, she'll tell you now that it was the best thing ever). The docs actually brought up the subject of transplant that year too. She didn't have a feeding tube like you do though. She made a turn around. We weren't sure what was going to happen, she was on IV antibiotics 3 times from July to Jan. when she needed to go on them again and she had to get a port put in. I can't recall what her pft's were at that time.

I give you all this background information because I want you to know that we've been there too. And that she pulled through, her pft's came up. After she got her port and that round of IV antibiotics, she did not need IV antibiotics again until her senior year. I think her pfts were around 60% when she graduated.

One thing we did about her classes was remove her from PE. She was able to be an aide in the PE class for special students, so she got her credits for PE and helped the teacher with special needs students.

She didn't require oxygen like you do right now but she did get out of breath quicker than her friends and there were times that she had to cut her outings short or not go at all because she would get cold so much easier and quicker than her friends.

Things may really suck right now but they can possibly get better. With summer almost here, now is your chance to concentrate solely on your health. Meaning no classes to worry about. I'm not suggesting you don't already devote 100% to your health. And I know, for heaven's sake I know, sometimes you must feel "how much more can I do?! I do it all and still it's not enough!" Your goal is to try and get those lung functions up. I know already you get short of breath and need oxygen but you need to try and get some exercise, even if that means putting on that oxygen in order to get it. Try a stationary bike, peddling slowly while you watch TV or do your nebs. or both. Although you can't wear oxygen, swimming, just paddling around slowly in the shallow end. Work on getting across the pool with the goal of making across without stopping by the end of summer. I know all these suggestions are easier to make than to do. But try, then you can say you tried.

Just know, you are not alone and vent away. There are many here that have been there either as a CF'er or as a parent. Feel better soon and good luck on your finals.
 
L

Liza

New member
Hi, I am so sorry you are having such a hard year. My oldest daughter went through a rough year her sophomore year in HS too. She went through several hospital stays (she wouldn't do home IV), used only a picc line and eventually had to get a port (she was adamently against it but had no choice because her veins were shot, she'll tell you now that it was the best thing ever). The docs actually brought up the subject of transplant that year too. She didn't have a feeding tube like you do though. She made a turn around. We weren't sure what was going to happen, she was on IV antibiotics 3 times from July to Jan. when she needed to go on them again and she had to get a port put in. I can't recall what her pft's were at that time.

I give you all this background information because I want you to know that we've been there too. And that she pulled through, her pft's came up. After she got her port and that round of IV antibiotics, she did not need IV antibiotics again until her senior year. I think her pfts were around 60% when she graduated.

One thing we did about her classes was remove her from PE. She was able to be an aide in the PE class for special students, so she got her credits for PE and helped the teacher with special needs students.

She didn't require oxygen like you do right now but she did get out of breath quicker than her friends and there were times that she had to cut her outings short or not go at all because she would get cold so much easier and quicker than her friends.

Things may really suck right now but they can possibly get better. With summer almost here, now is your chance to concentrate solely on your health. Meaning no classes to worry about. I'm not suggesting you don't already devote 100% to your health. And I know, for heaven's sake I know, sometimes you must feel "how much more can I do?! I do it all and still it's not enough!" Your goal is to try and get those lung functions up. I know already you get short of breath and need oxygen but you need to try and get some exercise, even if that means putting on that oxygen in order to get it. Try a stationary bike, peddling slowly while you watch TV or do your nebs. or both. Although you can't wear oxygen, swimming, just paddling around slowly in the shallow end. Work on getting across the pool with the goal of making across without stopping by the end of summer. I know all these suggestions are easier to make than to do. But try, then you can say you tried.

Just know, you are not alone and vent away. There are many here that have been there either as a CF'er or as a parent. Feel better soon and good luck on your finals.
 
L

Liza

New member
Hi, I am so sorry you are having such a hard year. My oldest daughter went through a rough year her sophomore year in HS too. She went through several hospital stays (she wouldn't do home IV), used only a picc line and eventually had to get a port (she was adamently against it but had no choice because her veins were shot, she'll tell you now that it was the best thing ever). The docs actually brought up the subject of transplant that year too. She didn't have a feeding tube like you do though. She made a turn around. We weren't sure what was going to happen, she was on IV antibiotics 3 times from July to Jan. when she needed to go on them again and she had to get a port put in. I can't recall what her pft's were at that time.
<br />
<br />I give you all this background information because I want you to know that we've been there too. And that she pulled through, her pft's came up. After she got her port and that round of IV antibiotics, she did not need IV antibiotics again until her senior year. I think her pfts were around 60% when she graduated.
<br />
<br />One thing we did about her classes was remove her from PE. She was able to be an aide in the PE class for special students, so she got her credits for PE and helped the teacher with special needs students.
<br />
<br />She didn't require oxygen like you do right now but she did get out of breath quicker than her friends and there were times that she had to cut her outings short or not go at all because she would get cold so much easier and quicker than her friends.
<br />
<br />Things may really suck right now but they can possibly get better. With summer almost here, now is your chance to concentrate solely on your health. Meaning no classes to worry about. I'm not suggesting you don't already devote 100% to your health. And I know, for heaven's sake I know, sometimes you must feel "how much more can I do?! I do it all and still it's not enough!" Your goal is to try and get those lung functions up. I know already you get short of breath and need oxygen but you need to try and get some exercise, even if that means putting on that oxygen in order to get it. Try a stationary bike, peddling slowly while you watch TV or do your nebs. or both. Although you can't wear oxygen, swimming, just paddling around slowly in the shallow end. Work on getting across the pool with the goal of making across without stopping by the end of summer. I know all these suggestions are easier to make than to do. But try, then you can say you tried.
<br />
<br />Just know, you are not alone and vent away. There are many here that have been there either as a CF'er or as a parent. Feel better soon and good luck on your finals.
 
M

Mallymookcf

New member
i just wanted to say how sorry i am that your having to go through all of this!! i wanted you to know i am praying for you and thinking about you!! keep us posted on how you are doing! Just fight and do all you can do to stay healthy!! things definitly can turn around. My senior year of highschool i was homebound because i was so sick and missing alot of school. i had a teacher come and bring me my work, so i pretty much missed my whole senior year with friends etc..! but i did get alot of rest and kit was a good thing, now lookin back. i was growing a nasty bacteria in my lungs that i had to have extensive iv treatments for a good amount of time. My pft dropped 20 points and i thought things would never look up...but they did...i slowly got better and better. Now qbout 7 years later i am married and have a sweet baby boy! keep the faith! God is great and does amazing things!!
Love mallory
 
M

Mallymookcf

New member
i just wanted to say how sorry i am that your having to go through all of this!! i wanted you to know i am praying for you and thinking about you!! keep us posted on how you are doing! Just fight and do all you can do to stay healthy!! things definitly can turn around. My senior year of highschool i was homebound because i was so sick and missing alot of school. i had a teacher come and bring me my work, so i pretty much missed my whole senior year with friends etc..! but i did get alot of rest and kit was a good thing, now lookin back. i was growing a nasty bacteria in my lungs that i had to have extensive iv treatments for a good amount of time. My pft dropped 20 points and i thought things would never look up...but they did...i slowly got better and better. Now qbout 7 years later i am married and have a sweet baby boy! keep the faith! God is great and does amazing things!!
Love mallory
 
M

Mallymookcf

New member
i just wanted to say how sorry i am that your having to go through all of this!! i wanted you to know i am praying for you and thinking about you!! keep us posted on how you are doing! Just fight and do all you can do to stay healthy!! things definitly can turn around. My senior year of highschool i was homebound because i was so sick and missing alot of school. i had a teacher come and bring me my work, so i pretty much missed my whole senior year with friends etc..! but i did get alot of rest and kit was a good thing, now lookin back. i was growing a nasty bacteria in my lungs that i had to have extensive iv treatments for a good amount of time. My pft dropped 20 points and i thought things would never look up...but they did...i slowly got better and better. Now qbout 7 years later i am married and have a sweet baby boy! keep the faith! God is great and does amazing things!!
<br />Love mallory
 
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