Emeraldmirror
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You never know... that's why i say steer clear of suspicous looking ones
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Parents w/CF and Talking to Kids
- Thread starter abloedel
- Start date
Anonymous,
When my husband and I were "friends" before we started dating, I never knew anything was different about him. When we started dating, he told me immediately and I had no idea what CF was, and felt really scared asking him about it so I did some research (mainly books) and then as the relationship progressed, I asked him questions as well as talked to his family about his CF and CF in general. In addition to that, I turned to my mom who is a nurse and she answered a lot of questions for me- more generalized medical stuff though. I can tell you what my husband's daily routine entails, hopefully that will give you some specifics to work with.
He is a full time student, doesn't work (he will once he graduates college next May). He is off of college for hte summer so he has a lot more free time- which has proved very beneficial to his weight and overall health. H e usually starts his day at 5:30 and immediately does his Pulmozyme via the nebulizer (medicaion to thin mucous in lungs, but not an antibiotic- you can google nebulizer to see what one looks like) and the Vest (www.thevest.com) at the same time for chest physiotherapy and that takes about 20 minutes total. Then he does his Tobi nebulizer (TOBI is tobramyacin which is an antibiotic, but it is especially made for use in the nebulizer in CF patients) and that takes 15-25 minutes to complete. Then he eats breakfast and drives me to work. I am in the military and we have a gym on base, so he goes to the gym for an hour or so then he goes home. When he gets home, he eats again and is usually pretty tired so he takes a nap. His nap is about an hour or two and then he is hungry again so he eats again. In the school year, he usually does some homework at this point and then will eat again. Since he is off for the summer, he will clean up the house, do the laundry, take the dogs for a walk, play on the internet, read a book...or whatever else he can find to do. Then it's time to eat again before he comes to get me from work. On Mon. Wed. and Friday. (just for the summer) he goes back to the gym on base and I join him for a workout. He only does weights, no cardio-because when he use to do a lot of cardio (it is healty for the lungs but really hard to get back into doing once stopped by a CFer) he only weighed about 135-140 at 6feet, and now he weighs about 190-195. After an hour or so at the gym, we drive home and have dinner. Then he usually takes a nap for an hour, then we watch TV or a movie while he does his pulmozyme and the vest again, then his tobi again after that. Then it's usually about 9pm and we head off to bed. That is his "typical" day. During the school year, he only got up to take me to work and go to the gym in the morning on M, W, F and he would work out in the afternoon only on M, and F.
You may notice that I said he eats a lot. He does have the digestive problems associated with CF and even though he takes ultrase enzymes (about 4-5 per meal, 2-3 per snack if needed) he still needs to eat a lot. Most CFers with digestive problems need to eat a lot more calories and fat than people without CF. Mark pay sa lot of attention to his Calorie intake and his protein intake, and even though the doctors tell him fat intake is important, he doesn't pay too much attention to it. He eats about 5500-6500 calories a day (a non CFer averages between 2000-2500 a day, maybe even a little less) and about .75 grams of protein per LEAN body mass on days he does NOT work out, and about 1.0-1.5 grams of protein per lean body mass on days he DOES workout. That requires him to eat about every two hours or so. He really likes the boost plus shakes (Same thing as ensure, only less expensive) in case he is driving or running errands and is really hungry and needs to eat or is really exhausted and just doesn't feel like cooking something right then and there (and there are no left overs to heat up).
As far as me dealing with it, It's really hard to see someone you love being sick and not feeling good. He's not always sick, but when he is I feel really bad for him and I wish it were me. When he is sick, he gets really exhausted and naps moreso than usual. So that requires me to do a lot more of the housework, in addition to working my (sometimes long) shifts at work and going to school part time (I am going back to school for pre-law) but it's a labour of love, and although it leaves me a little more exhausted at the time, it's worth it and it's a trade off because I get sick sometimes too. He does the same for me though when I am sick. Working in the hospital, I brought home the Flu (we stayed in separate rooms so he wouldn't get sick and I wore a mask when at home-only for about 4 days though) a lot my first 7 months or so and he would take on his school work, going to the gym and all the household chores (we also have two dogs and two cats which keep us busy) when I was sick and just didn't feel like doing anything.
It's hard knowing that my husband might not live to old age, but I can say that it does make us appreciate our time together a lot more. Since he and I have been together I have sure been more thankful and grateful to wake up every morning, and I appreciate the small things in life. I also share some thoughts on life that not everyone agrees with, but that's life. I live life with Mark thinking that either of us could die at any time, and his death might not be at all related to CF. It could be a car accident, a shooting, bad medications, an illness of somesort.... and that is how we both live ourlives. Nothing in life is ever guaranteed, so you might as well live it the best you can and not sweat the small stuff.
If you have more questions, please let me know. You can email me if you like- division902@hotmail.com. Also, I created a website about males with CF and infertility-you might be able to use some of it in your project, afterall, it is a part of CF for about 95-98% of men with CF. the website is www.cysticfibrosismaleinfertility.com
Take care,
Julie
When my husband and I were "friends" before we started dating, I never knew anything was different about him. When we started dating, he told me immediately and I had no idea what CF was, and felt really scared asking him about it so I did some research (mainly books) and then as the relationship progressed, I asked him questions as well as talked to his family about his CF and CF in general. In addition to that, I turned to my mom who is a nurse and she answered a lot of questions for me- more generalized medical stuff though. I can tell you what my husband's daily routine entails, hopefully that will give you some specifics to work with.
He is a full time student, doesn't work (he will once he graduates college next May). He is off of college for hte summer so he has a lot more free time- which has proved very beneficial to his weight and overall health. H e usually starts his day at 5:30 and immediately does his Pulmozyme via the nebulizer (medicaion to thin mucous in lungs, but not an antibiotic- you can google nebulizer to see what one looks like) and the Vest (www.thevest.com) at the same time for chest physiotherapy and that takes about 20 minutes total. Then he does his Tobi nebulizer (TOBI is tobramyacin which is an antibiotic, but it is especially made for use in the nebulizer in CF patients) and that takes 15-25 minutes to complete. Then he eats breakfast and drives me to work. I am in the military and we have a gym on base, so he goes to the gym for an hour or so then he goes home. When he gets home, he eats again and is usually pretty tired so he takes a nap. His nap is about an hour or two and then he is hungry again so he eats again. In the school year, he usually does some homework at this point and then will eat again. Since he is off for the summer, he will clean up the house, do the laundry, take the dogs for a walk, play on the internet, read a book...or whatever else he can find to do. Then it's time to eat again before he comes to get me from work. On Mon. Wed. and Friday. (just for the summer) he goes back to the gym on base and I join him for a workout. He only does weights, no cardio-because when he use to do a lot of cardio (it is healty for the lungs but really hard to get back into doing once stopped by a CFer) he only weighed about 135-140 at 6feet, and now he weighs about 190-195. After an hour or so at the gym, we drive home and have dinner. Then he usually takes a nap for an hour, then we watch TV or a movie while he does his pulmozyme and the vest again, then his tobi again after that. Then it's usually about 9pm and we head off to bed. That is his "typical" day. During the school year, he only got up to take me to work and go to the gym in the morning on M, W, F and he would work out in the afternoon only on M, and F.
You may notice that I said he eats a lot. He does have the digestive problems associated with CF and even though he takes ultrase enzymes (about 4-5 per meal, 2-3 per snack if needed) he still needs to eat a lot. Most CFers with digestive problems need to eat a lot more calories and fat than people without CF. Mark pay sa lot of attention to his Calorie intake and his protein intake, and even though the doctors tell him fat intake is important, he doesn't pay too much attention to it. He eats about 5500-6500 calories a day (a non CFer averages between 2000-2500 a day, maybe even a little less) and about .75 grams of protein per LEAN body mass on days he does NOT work out, and about 1.0-1.5 grams of protein per lean body mass on days he DOES workout. That requires him to eat about every two hours or so. He really likes the boost plus shakes (Same thing as ensure, only less expensive) in case he is driving or running errands and is really hungry and needs to eat or is really exhausted and just doesn't feel like cooking something right then and there (and there are no left overs to heat up).
As far as me dealing with it, It's really hard to see someone you love being sick and not feeling good. He's not always sick, but when he is I feel really bad for him and I wish it were me. When he is sick, he gets really exhausted and naps moreso than usual. So that requires me to do a lot more of the housework, in addition to working my (sometimes long) shifts at work and going to school part time (I am going back to school for pre-law) but it's a labour of love, and although it leaves me a little more exhausted at the time, it's worth it and it's a trade off because I get sick sometimes too. He does the same for me though when I am sick. Working in the hospital, I brought home the Flu (we stayed in separate rooms so he wouldn't get sick and I wore a mask when at home-only for about 4 days though) a lot my first 7 months or so and he would take on his school work, going to the gym and all the household chores (we also have two dogs and two cats which keep us busy) when I was sick and just didn't feel like doing anything.
It's hard knowing that my husband might not live to old age, but I can say that it does make us appreciate our time together a lot more. Since he and I have been together I have sure been more thankful and grateful to wake up every morning, and I appreciate the small things in life. I also share some thoughts on life that not everyone agrees with, but that's life. I live life with Mark thinking that either of us could die at any time, and his death might not be at all related to CF. It could be a car accident, a shooting, bad medications, an illness of somesort.... and that is how we both live ourlives. Nothing in life is ever guaranteed, so you might as well live it the best you can and not sweat the small stuff.
If you have more questions, please let me know. You can email me if you like- division902@hotmail.com. Also, I created a website about males with CF and infertility-you might be able to use some of it in your project, afterall, it is a part of CF for about 95-98% of men with CF. the website is www.cysticfibrosismaleinfertility.com
Take care,
Julie
Dear Julie,
Thank you for all your help. I know my last question wasn't an easy question for you to answer and that's why i appreciate the fact that you answered me back so soon. You have helped me a lot with my project and your website has also helped me. I'm almost done with my project and i think i did vey well thanks to you and everyone else at this site. I wish the best of luck to Mark and you. Even after my project is over all try to stay in touch just to learn more about CF and read other peoples stories.
Maral
Thank you for all your help. I know my last question wasn't an easy question for you to answer and that's why i appreciate the fact that you answered me back so soon. You have helped me a lot with my project and your website has also helped me. I'm almost done with my project and i think i did vey well thanks to you and everyone else at this site. I wish the best of luck to Mark and you. Even after my project is over all try to stay in touch just to learn more about CF and read other peoples stories.
Maral
Hey all, I know this thread was initially asking questions about talking to your child about CF but I can´t help but respond to another topic touched on here a few days ago. The person with the high school project called CF a 'disorder' and to be honest my first reaction (along with Julie's as well) was to take slight offense by this and feel the need to correct that person. However, I think Katie is right... CF is a disorder, but I guess none of us want to admit it. We shouldn#t let it bother us, the label that is...
But its the old 'politically correct' issue creeping up again. Initially I would say that I dont see the problem calling someone who is phsyically disabled exactly that. I think that by sugar-coating it, ie calling it physically challenged, and calling CF something not so to the point, is just our way of comforting ourselves about the problems we face. We all want to feel as normal as the next guy in terms of our health, but have a hard time facing the reality that we are indeed different.
And to be honest, I would say that I dont see the point of being politically correct. Saying something that is not politically correct is taken as an insult, but if I wanted to insult someone I would and could just do it. But I guess when it is directed at ourselves it is a different issue, and reading these threads I have learnt that. I didnt care for the sugar-coating, but now I wouldnt mind it... call it CF, not a disorder. But then... maybe its just a matter of a technicality. I dont mind saying that I have a disease, but a disorder implies something else... I don't know. Im rambling, as per usual.
Wouldn't mind hearing what other people think of this...
Rob 24 wcf
But its the old 'politically correct' issue creeping up again. Initially I would say that I dont see the problem calling someone who is phsyically disabled exactly that. I think that by sugar-coating it, ie calling it physically challenged, and calling CF something not so to the point, is just our way of comforting ourselves about the problems we face. We all want to feel as normal as the next guy in terms of our health, but have a hard time facing the reality that we are indeed different.
And to be honest, I would say that I dont see the point of being politically correct. Saying something that is not politically correct is taken as an insult, but if I wanted to insult someone I would and could just do it. But I guess when it is directed at ourselves it is a different issue, and reading these threads I have learnt that. I didnt care for the sugar-coating, but now I wouldnt mind it... call it CF, not a disorder. But then... maybe its just a matter of a technicality. I dont mind saying that I have a disease, but a disorder implies something else... I don't know. Im rambling, as per usual.
Wouldn't mind hearing what other people think of this...
Rob 24 wcf
To Dave - the poster who wanted to know what scholarship my daughter won....
It's through Youth for Understanding...the run programs throughout the world. Their scholarship deadlines for most programs are December/January.
Their website is:
www.yfu-usa.org
Hope this helps! Good luck!
Amy
It's through Youth for Understanding...the run programs throughout the world. Their scholarship deadlines for most programs are December/January.
Their website is:
www.yfu-usa.org
Hope this helps! Good luck!
Amy
NoDayButToday
New member
Maral,
I just reread my post to you and I must have been having a bad day, because I was kind of harsh! Sorry for that! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Good luck with the project- you seem like a committed student- more so than most project people we get on here!
I just reread my post to you and I must have been having a bad day, because I was kind of harsh! Sorry for that! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Good luck with the project- you seem like a committed student- more so than most project people we get on here!
Coll,
Thx for not being mad at me and its ok that you said that it was my fault for asking questions like that and next time all try to think a little more about the questions i ask. <img src="i/expressions/face-icon-small-smile.gif" border="0"> It's okey everyone has bad days don't worry baout it i understand.
Maral
Thx for not being mad at me and its ok that you said that it was my fault for asking questions like that and next time all try to think a little more about the questions i ask. <img src="i/expressions/face-icon-small-smile.gif" border="0"> It's okey everyone has bad days don't worry baout it i understand.
Maral
CFadultsDad
New member
Maral, you are welcome here anytime. All the best as you continue your studies. And please pass our compliments to your Mom, or whoever taught you the importance of courtesy and mutual respect.
All:
Had THE talk with my daughter prior to her leaving on this week. I think it was harder for me to say then it was for her to hear. I explained to her that IF anything were to happen to me while she's in Japan, I wanted her to know she is exactly where I want her to be and doing exactly what I want her to be doing...living her life.
She just got a little teary eyed, then gave me a BIG hug and said "Aw, mom, IF there's an emergency situation, the program sponsors already said they'd figure out a way for me to get home." She'd already checked into it...gotta love her!
So far she's having a fabulous time! Just wanted to thank everyone for your support/suggestions on dealing with this issue.
Amy
Had THE talk with my daughter prior to her leaving on this week. I think it was harder for me to say then it was for her to hear. I explained to her that IF anything were to happen to me while she's in Japan, I wanted her to know she is exactly where I want her to be and doing exactly what I want her to be doing...living her life.
She just got a little teary eyed, then gave me a BIG hug and said "Aw, mom, IF there's an emergency situation, the program sponsors already said they'd figure out a way for me to get home." She'd already checked into it...gotta love her!
So far she's having a fabulous time! Just wanted to thank everyone for your support/suggestions on dealing with this issue.
Amy
C
CFMommy
Guest
I couldnt imagine feeling what your daughter feels right now, cause Ive never been in that situation, but I am a mom who has a 9 month old and I know someday, Im going to be put in your position someday. All I can say is reasure her that all you want is what's best for her and it would hurt you more to see her not happy and worrying about you while she's away. Tell her you would rather see her do good for herself more then anything. Cause I know when my daughter grows up, I dont want her to put her life on hold just to take care of me or to be unhappy all the time cause Im sick all the time. I hope everything works out for you two though, good luck!<img src="i/expressions/rose.gif" border="0">
I am a 37 year old, stay at home Mom with CF. Shortly after graduating high school & getting a job, my Mom decided to move from our home in NY to AZ. It was a year after my Dad died & we had to sell our house & she just needed a fresh start. She made sure I was set up in a place to live, we had our last big family holiday at my new place which was fun because when you get my family togethers it can get up to 35+. She lived in AZ for 4 years. She traveled back & forth, but mostly lived there. We were in touch, but if I got sick I couldnt keep her away. One type I was admitted & tried not to tell her so she wouldnt worry, but it didnt work & she drove back home to be here even tho she couldnt do anything. It was good that she get away from me because she had to see for herself that I would be ok even if I had some bumps along the way.
Much of this applies to my 7 year old daughter also. We had a spell that she didnt want to do anything because she was afraid if she wasnt by my side that I would disappear into the hospital. My last admission in 5/05 that happened. I went down for a checkup & was admitted. I knew it would happen, but I didnt tell her that. I warned the woman who would pick her up from school & my daughter was fine. Upset, but fine. She did much better that way then in 3/05 when I planned everything & my husband & her went with me & she was home on Spring break. I now explain to my daughter that no matter how well I take care of myself sometimes things happen just like with her allergies or when she is playing. No matter how dilligent you are in taking meds etc or being careful things happen & we just deal with them. It was hard on me, but it got easier as I knew she was doing well.
Much of this applies to my 7 year old daughter also. We had a spell that she didnt want to do anything because she was afraid if she wasnt by my side that I would disappear into the hospital. My last admission in 5/05 that happened. I went down for a checkup & was admitted. I knew it would happen, but I didnt tell her that. I warned the woman who would pick her up from school & my daughter was fine. Upset, but fine. She did much better that way then in 3/05 when I planned everything & my husband & her went with me & she was home on Spring break. I now explain to my daughter that no matter how well I take care of myself sometimes things happen just like with her allergies or when she is playing. No matter how dilligent you are in taking meds etc or being careful things happen & we just deal with them. It was hard on me, but it got easier as I knew she was doing well.
The one thing for certain that this has taught my daughter (and me) is to live each day to the fullest extent possible. Not exactly how I had hoped she would learn this...
She's in Japan now and having a fabulous time. She's so busy she doesn't even have time to miss me! (And that's a good thing!)
The best advice you all gave to me was to be as open and honest as possible. My daughter knew I was getting sick again before she left and she knows I have clinic appts every other Thursday...so she makes sure to call on those days to check up on the latest meds I am taking, how I'm feeling, etc. She is (as am I) relieved that I haven't had to go back on the IV meds yet...but sadly, I think that's coming soon..oh well...better than another visit at Club Med,right? Makes you wonder who the parent is sometimes...haha!
Amy
36 w/CF
She's in Japan now and having a fabulous time. She's so busy she doesn't even have time to miss me! (And that's a good thing!)
The best advice you all gave to me was to be as open and honest as possible. My daughter knew I was getting sick again before she left and she knows I have clinic appts every other Thursday...so she makes sure to call on those days to check up on the latest meds I am taking, how I'm feeling, etc. She is (as am I) relieved that I haven't had to go back on the IV meds yet...but sadly, I think that's coming soon..oh well...better than another visit at Club Med,right? Makes you wonder who the parent is sometimes...haha!
Amy
36 w/CF
Hi everyone,
I finally finished school and i got 100 on my biology project. I just wanted to say thx to everyone and that i appreciate everyones help w/ my project. I was so happy when i got my project back and i found out that i was the only one in my class who got 100 percent on the project.
Maral
I finally finished school and i got 100 on my biology project. I just wanted to say thx to everyone and that i appreciate everyones help w/ my project. I was so happy when i got my project back and i found out that i was the only one in my class who got 100 percent on the project.
Maral
Hi
I have a son who has cytic fibrosis. We just found out about 2 and 1/2 years ago. He was very sick at the time. Luckily we got over that bad patch and the doctors have my son on alot of medicices ( nine right now). Me and his father and doctors are stressing the importance that the reason he feels as good as he does to date is because of the medines he is on. He takes pulmozyne and albuterlol and has a vest that he uses twice daily. He thinks because he is feeling good he doesn't have to take his medicines and it is a constant battle everyday. We have offered his award assentives and other thing. I believe one problem is he knows no other kids with his illness and even though we have relayed the seriousnes of this illness he doesn't get it. I am really worried about his health. Does anyone have any suggestions. My email address is k_m_@yahoo.com. My name is Kandi Moore my son is Eric.
I have a son who has cytic fibrosis. We just found out about 2 and 1/2 years ago. He was very sick at the time. Luckily we got over that bad patch and the doctors have my son on alot of medicices ( nine right now). Me and his father and doctors are stressing the importance that the reason he feels as good as he does to date is because of the medines he is on. He takes pulmozyne and albuterlol and has a vest that he uses twice daily. He thinks because he is feeling good he doesn't have to take his medicines and it is a constant battle everyday. We have offered his award assentives and other thing. I believe one problem is he knows no other kids with his illness and even though we have relayed the seriousnes of this illness he doesn't get it. I am really worried about his health. Does anyone have any suggestions. My email address is k_m_@yahoo.com. My name is Kandi Moore my son is Eric.
I just read in another post your son's 12. 7th grade-ish? Tough, independent age. My first suggestion is to post your question to the teens board, I'm sure they'd have the best ideas.
I challenged my meds not only in adolescence but in adulthood. It's natural, who wants to spend hours everyday doing things if they don't work? One idea is to encourage your son to do research on whether these meds work. If he can find controversal data then maybe you should let him experiment with not taking a certain med/therapy and monitoring how he does. Have him keep a log of peak flows, weight, activity level, sputum measurements, how he feels, etc. He may decide it's easier to just do the med than track all that stuff. Or maybe the med will have him doing better. Or maybe he'll discover something that works better.
For example: I have had my doubts about chest physio therapy (clapping) my whole childhood. Through experimenting I learned that other methods worked better (flutter, vest, cardio). Same with Pulmozyme (Hypertonic saline works better for me). I went through a phase of eating a no fat diet so I didn't have to take enzymes. That didn't last long -- food went straight through me . . .
My point is if your son is genuinely questioning whether the drugs he takes work, I think it's ok to experiment and discover what works best <b>for him</b>. If he is just trying to get out of doing all of this stuff, I think that will pass when he learns how serious you are about his well being (making him track all that stuff).
Good luck and please keep us posted!
I challenged my meds not only in adolescence but in adulthood. It's natural, who wants to spend hours everyday doing things if they don't work? One idea is to encourage your son to do research on whether these meds work. If he can find controversal data then maybe you should let him experiment with not taking a certain med/therapy and monitoring how he does. Have him keep a log of peak flows, weight, activity level, sputum measurements, how he feels, etc. He may decide it's easier to just do the med than track all that stuff. Or maybe the med will have him doing better. Or maybe he'll discover something that works better.
For example: I have had my doubts about chest physio therapy (clapping) my whole childhood. Through experimenting I learned that other methods worked better (flutter, vest, cardio). Same with Pulmozyme (Hypertonic saline works better for me). I went through a phase of eating a no fat diet so I didn't have to take enzymes. That didn't last long -- food went straight through me . . .
My point is if your son is genuinely questioning whether the drugs he takes work, I think it's ok to experiment and discover what works best <b>for him</b>. If he is just trying to get out of doing all of this stuff, I think that will pass when he learns how serious you are about his well being (making him track all that stuff).
Good luck and please keep us posted!