CF'er Character
- Thread starter anonymous
- Start date
Not from the inside out??? what does that mean.. you don't have CF? If you don't, it's virtually impossible to quantify what it means to have it.... are you healthy or not? Are you awaiting a pending lung transplant or are your lung functioning at 100 %? Do you have any gastro-intestinal issues and suffer the stunted growth? I can tell you that I have no GI involvement, just lung issues yet I know other CF'ers who have just G.I. issues (gastro-intestinal)....... Yet at the same time I spent my youth, even when I was 16, perfectly healthy, only now at age 30, I'm transplant material.....please be more clear.-E.A.P.
thats really rude e.a.p. lighten up, put a smile on your dial. ill try to help you as best as i can first poster. although im not 16, im not male and ive never been to a boarding school i guess you could write about things like weight, bowel and lowered activity problems [i was a failure at sport]. i know that male cf teenagers can have a hard time gaining weight and looking like 'the rest'. maybe write about having to go home because they get sick, bullying, having to do meds in front of others, being away from family when you need them most. heres a funny, write about letting off a big ripper in the middle of class? <img src="i/expressions/face-icon-small-blush.gif" border="0"> it happens! maybe you could give it a twist and the character skips his treatment and gets really sick? or he could be a model cf citizen. or something really tragic happens through no fault of his own! maybe some males can give some input. good luck.
Mockingbird
New member
I remember when i was sixteen, i really had to be focused on gaining weight. I had to force so much food down my throat, I'd puke every time and it took a while for me to control that. Well, anyway, it was really horrible. Also, I was smaller than most (of course) so there was a little bullying that I had to go through, but no more than any other small kid. Everyone who found out about my CF in high school was respectful whenever the subject came up, but otherwise I don't think they really thought about it much, because I was treated just like everyone else. Of course I wasn't on oxygen, or anything, so there wasn't anything around to remind them. If there was, i'm sure they would have continued to be respectful of it... meaning they would have treated me differently, like something that's fragile. =-)Also at sixteen, I had that rebelious atttitude, especially about taking medication and such. After taking it for sixteen years, I guess I got sick of it. Of course, after taking it for twenty two years, I'm still sick of it, but I still take it anyway. =-)If you want to create a realistic cf character, i'd suggest loooking into the personality traits... I've noticed we have quite a few in common. Have you ever known any of us personally? I'm sure that would help. For me, i'm kind of quiet, which makes people think I'm shy, then when they find out I have CF, they think i'm strong, though, I'm neither shy nor strong. I just don't really feel like talking most of the time; I don't really see the point of entering into a lo of conversations that go on around me. =-) Also, i'm really loyal to my close friends. When i find someone who can deal with my cf in the right way, then I open up to that person and they usually become a close friend. That's another thing, the right and wrong things people do around us. Ahhh, I'm out of time, though. I have to go. If you have any specific questions, or you want to hear more, then my e-mail is jarodbulthuis@hotmail.com. Maybe I'll post more here later, too. =-)Jarod22 with CF
The thing about a CF character is that as with CFer's there is such a variation in the disease. One CFer might take few meds and no therapy, another might do therapy and many meds, and another might be in the hospital three or more months out of the year - when added up. I would suggest thinking about what degree of illness you want this person to have, and would it progress through the story, from good to a first time hospital stay. I suppose you could pose a question about what people do on a daily basis, living with CF. For me, I do an hour of therapy three times a day, plus inhaled Pulmozye - which takes little time since i do it during my vest, plus all the other oral meds. The difficult time is when it is IV's and inhaled drugs plus the vest and still trying to do school or work. I am 27, I lived a much healthier life when I was 16, wasn't in the hospital for the first time until I was 17 - wow where did that decade go!!!! Most CFer's are willing to share, there are a few grouchy ones 
I fall into that category once in a great while. Good luck in your research, and feel free to ask more questions.
I fall into that category once in a great while. Good luck in your research, and feel free to ask more questions.From what I understand, the average of therapy regimens is somewhere around 2 hours for people roughly that age- say 15 to 21...and I have sampled CFers as to what their medications are. My character now is fairly tall, but rather thin and does at least the Vest and Pulmozyme as well as takes enzymes. So he's pancreatic insufficient and needs to do the Vest twice a day. I haven't decided what severity his CF is, but it's not severe...Thanks so much. I think if it ever gets published it would be a good CF publicity grab.
As for medications and regimens, is this fairly accurate for a mild-moderate 16 year old CFer?:He was "born" in 1988, so his life expectancy is closer to the mid-30s?He has delta-f508?Takes: PulmozymeTOBI every other month5-6 enzymes with meals, 3-4 with snacks (that's a high dose?)Acid reducerAlbuterol w/the VestMultivitaminADEKAllergy meds?Swims most daysThanks so much
NoDayButToday
New member
I'm 15 (born in 1989), and I have a fairly similiar medication regimen-- the only thing I would maybe add is a nasal spray, and I also have a fast acting inhaler (though more for asthma than CF). I also have a feeding tube, but if he is going to have a more mild case, he may not have one. Another thing some CFers get is a port-- but again, that is usually after many IV antibiotics, and a milkd case probably wouldn't have as many. Good Luck !
A main issue you might want to deal with with your cf character is the issue of completely ignoring his CF. most likely if he is at a boarding school and in high school he is not going to be taking all his meds on time, happily sitting there doing the vest, and eating well. If he is mild to moderate he mostly likely has been that way b/c of the care he got while living at home...good meals, normal sleep, etc., and that will all change. He will probably skip or rush treatments, eat poorly, and stay up late, or blow off his medicine, or take it at random times when he remembers. I am a 21 year old girl who attended a boarding school as a day student, and boarding school life is just like practice for college, only with all the things that go along with being a teenager...so in a way he probably will be more in need of social acceptance than he would be if he were in college.And the vest is an issue, i just got mine a year ago, but i know that i will never just hang out and do it in front of anyone but my parents and my boyfreind. It is a really silly looking machine that a 16 year old would most likely rather die than do in his boarding school dorm room.
HollyCatheryn
New member
There is a sense in which even nailing down the details of the specific severity and its implications is difficult. I have, by most anyone's standards, very mild CF because I have had no lung damage and my lung functions are above 100% even when I'm sick (both now and as a teen). But, there were a number of years in my teens (many people experience this) when the stress of life and hormones threw my body totally out of whack. I was in the hospital every couple of months and having sinus surgeries several times a year. I got a port because my veins were so shot from all the IV's. It got so bad and I missed so much school that I actually faced either opting to get my GED or having to repeat a grade. Despite this, I was still on the varsity swim team and in great shape. Most people would never know I had any problems to look at me. I don't know if it is because of being frustrated by the necessary maturity required to take good care of a body with CF, but a lot of teens including myself, really slack off from their maintenance regimines. I don't know how sick I would have been during that time if I'd really taken care of myself, but somehow I needed so badly to feel "normal" that I refused to do the things that would allow me to be more "normal" (as in taking my treatments so I wouldn't have to miss school for 2 weeks for a hospital stay).One thing I'd like to add is that in your description of your character thus far, you said his life expectancy would be around the mid-thirties. I think that should be extended. Early 30's is the AVERAGE life-expectancy, meaning factor in all the sickest of us with the healthiest and this is the number you get. If he's got a mildish case and he halfway takes care of himself, especially if he's active (you mentioned swimming - for your info, most competetive swimmers have pulmonary functions about 20-30% above normal for a similar person, even if they have CF - at my peak mine was 145%) he's got every reason to plan to be around AT LEAST into his 40's, but more like 50's. He's also born in the generation that has benefitted from the combination of the resiliance of youth and the rapid advance of technology, treatment, and medications.
Hello
My life as a teen was very sad and full of death, I'm sorry to say but it needs to be said. watching all the friends that I made in the hospital die of the same thing I have, girl friends etc. I was the one in my family who had to stop life support for my brother because no one else could do it. I could see and feel him suffering. I even died once . Now I have a new lease on life, I'm married and have a wonderful son and life. I don't want to see any more death.
40 w/CF 1 yr post TX
My life as a teen was very sad and full of death, I'm sorry to say but it needs to be said. watching all the friends that I made in the hospital die of the same thing I have, girl friends etc. I was the one in my family who had to stop life support for my brother because no one else could do it. I could see and feel him suffering. I even died once . Now I have a new lease on life, I'm married and have a wonderful son and life. I don't want to see any more death.
40 w/CF 1 yr post TX