Wanting to Work with CF families and people

[anonymous]

Hi, I have cf I am 23yrs old and trying to figure out what i should do with my life I have always wanted to be a nurse and work with CF children, and try to make the best for them when they where in the hospital, but I don't have time for all that school, nor the money. I know my calling in life is somthing to do with CF. I want to work with CF families and kids exspecially. I was thinking maybe trying to open a center in or by the hospital for when they are in the hospital they can go there for a couple of hrs, to get out of there rooms, but don't have any idea on how to get that started. I don't know what to do, does anyone have any suggestion on things to do with CF. I was also thing respitory therpist, and then that way I could always be up to date on the new things, plus still play with the kids and help them. ANY thought at all please reply or email me at Missmary083@aol.com thanks

mary<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[Scarlett81]

Wow, Mary that is so sweet. You sounds really nice and very smart. I would suggest you contact the CF Foundation. Also, what field do you want to be in? Pediatrics office? Hospital? Child life? Maybe if you narrowed the field a little?
I would find a CF center close to you and visit, see if there's any openings. You have lots of good ideas. Go to a center and see what they say.

I just wanted to add that some of the dearest people to my heart from my childhood aren't doctors, they are child life employees, like people at the playroom in the hospital, and nurses, respiratory specialists. I'll never forget them. THey'd do special things to make us feel at home like bring pizza to our room and watch movies with us at night if we were alone. Bring special toys to our rooms. Those people are just as important as doctors to kids!!

 

[anonymous]

See i think I want to start something like that I visit rooms, bring them what they want and just spend time with them, then eventually start a center close or inside the hospital but I also want a place where I can have somthing like a play center or somthing outside for the summer months, just to get them outside. Cuz I know when I stay in the hospital I die cuz it sucks staying inside those rooms and hospital all day for week or weeks at a time. But I don't know if hospitals would let me just go to these kids room, I also want to make a career out of this not just volunteer I hope that doesn't sound selfish, its just what I want to do with my life and everyone needs to make money. So I guess I could contact the CF chapter in my area and see if maybe they would hire me to do those kinda things until I can get the center open. YIKES i don't know. thanks for your input.

Mary

 

[taylorangel]

Mary, I find it more and more these days. that most people have no
clue what CF is. I have to deal with this every where i go. I have
son that is 5 yrs old with it. Most of the schools have no clue
what CF is either. Maybe you could help educate the public and the
school systems. I took and registered my son with his school. He is
started kindergarten<br>
this year. Well i was told my son wasn't physically disabled so he
couldn't ride the handicap school bus. ( i live out in the country)
Well after alot of fussing and telling them i would love to go to
the school board and place my complaint to them as well as the
other agencies that i know will help with this. they decided to let
him ride. Now we have him riding in the morning on the handicap bus
but i still have to drive over 25 miles to the school to pick him
up because the bus won't come bring him home at the time he needs
cause he is required to attend the school for more than 6 hours a
day. (sorry, wanted to let ya know more of the problem there ) Any
way, educating the schools as well as the general public is a good
start or idea. I am trying to do this down here in the south. Maybe
this is help another parent with CF that has to deal with it
also.<br>
<br>
sorry for the long post.. i have alot of frustration with this
every where we go.<br>
<br>
thanks, Hope

 

[anonymous]

thanks that is a good idea, cuz i remember my school experience, was every day for lunch I had to leave the class room and go to the main office take my pills, and then have to deal with the questions from the kids where do you go? Also every year my mom would have to write a letter to all the teachers and prinicpal about my condition and during the warmer mths I should be able to get a drink of water at any given time and etc. There are alot of things that have to do with schools and probably work. I think I will look into some infor on how to educate schools and make easier for families, just because we don't have any physical disformates doesn't mean we aren't disabled, we need special treatment as well. Don't worry about the long post its good to get everything out that makes you angry you will feel alot better, so please anytime you feel the need to vent do it!

 

[anonymous]

I forgot to add this in I don't know if you saw this or not but on CFF.org is a new thing that could help raise awarness its called cure finders. <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/ways_to_give/become_a_cure_finder/,">http://www.cff.org/ways_to_give/become_a_cure_finder/,</a> check it out and try to submit it to his school. Good Luck

Mary

 

[Scarlett81]

Since schools were mentioned, this reminded me-when I was in 10th grade science we went over DNA, and genetic diseases. I think they go over them even earlier in school now. And my little sister in law came home one day and asked me about CF/DNA for class b/c she said they mentioned it.
Anyway, my teacher had me give a 20 min speech about it, I remember. It was nice b/c no one knew anything about it. And then the class was open to questions. I remember people asked me things like-"Are you scared? How do you feel about the hosp?" It was good b/c it gave a face to the disease and to the genetic issues the class was learning about at the time.
I'm assuming you don't have CF, but you could give the educational aspect/the DNA aspect of the speech and then bring a young person to the school to talk about CF after your presentation. Teaching the school about the disease and how it works, and then also giving the patient the opportunity to talk, which is nice too!

I was wondering how you ended up getting so involved in CF specifically?

 

[Alyssa]

Hi Mary -- I don't mean to rain on your parade but I'm not so sure you will be welcomed with open arms to care for another person with CF (the whole cross contamination issue) You would also be putting yourself at risk by being exposed to others with CF (especially when they are sick)

I know when my daughter first starting looking into becoming a nurse, the issue of MRSA came up and it was discussed with her doctor about the possibility of exposing patients (especially burn victims) to MRSA -- he said he wasn't really sure how to approach it, but it could become tricky because she would be putting patients at risk. I think the same could be said for CF patients coming into contact with you and vice versa. But iour doctor also admitted that there are several nurses out there who do have CF and are working, so it's not impossible, however you might find out you need to consider either changing your idea a bit to either not involve CF patient contact for your CF work, or provide the same service you envision but work with children who are in the hospital for reasons other than CF.

Best of luck with whatever you decide!

 

[anonymous]

I agree with Alyssa about problems with you having CF. A lot of doctors and families don't want other CF people near their patients or children because of risk of infection. Therefore I don't know if you would be allowed to interact with them for their health and for yours.

I think it is great though that you want to do something and I really do reccommend something having to do with educating people. Anyone who wants to get the word out there about this disease is great and it would be so beneficial!

Good luck!

Sue 24w/CF

 

[anonymous]

Yea thats true and I did take all that into consideration, I guess I really want to get the awarness out there not many people know what the diesase seems to be, or if they do know they don't full understand. I guess I could start out as a non-profit and see if the CFF would found me into starting somthing to help families at schools, work, and the general public, I want people to know what it is just like people know about breast cancer well it may never be that know, but if we all worked together I bet we could achieve that somewhere down the road. Also maybe somewhere down the road i could open the care center and just do all the managing. Hire people to play with the kids and things.

Thanks for all the reply its really getting my brain thinking LOL, please share all ideas and how to get started as well.

Mary 23 w/CF

 

[anonymous]

Scarrlett,
Hi I have cf myself and just want to help people i am unsure what to do with mylife and since i know so much about this i figure i could figure something out that would benefit someone. thanks for the reply.


Mary 24 w/cf

 

[Scarlett81]

Oh Sweetie,

I honestly didn't realize you had CF, I thought it had affected your life in another way, like you had a relative or a friend. My mistake! So sorry!
It's true Mary that you will probably not be able to help kids with Cf in the way you want to b/c of infection control regulations. People with Cf are not supposed to be around other people with Cf-not sure if you are aware of that or not. But it's b/c we have organisms in our lungs that we can give to each other.

This is a very controversial topic, some have no problem with being with other cfers. However, a doctor will NEVER let you have a job doing this, as long as it is with specifically Cf kids. I hope this doesn't ruin your dream. There are still plenty of things you can do to help kids with cf.

Maybe speaking at schools? Educating others?

Again, don't let this ruin your dream! There's still plenty to do in the fight against Cf.

 

[anonymous]

Yea your totally right I don't have a problem being around others but i'm sure others have a problem which is totaly understandable. I remember when they found out that we can transmit infections though each other, and told me evertime i leave the room i had to wear a mask, and I got so pissed, I told my mom i wasn't wearing that cuz I didn't have a diesase that people could catch, and it made me feel very sad and different nobody really explained to me why i needed to wear it, the nurse just told me i had to. I felt like if i talked I would infect people ya know and i didn't like it. So thanks again.

Mary 23w/cf

 

[anonymous]

HI, everyone So I will try out this idea first, please send me your schools name and address and surrounding schools if possible and I can start sending out some information packets, and also send me your work address and names or any other place these packets can benefit anyone. I will have the general information of CF, and give resources. I am going to submit this to the cff and get there input on this.

What i do need is a good name to call this, I was thinking help save 65 roses, but please send me your ideas for some names as well.

My email address Missmary083@aol.com, send all information there and i will keep it private you don't have to tell me your name, send me info even if your child doesn't have it, I can still send it to your school, cuz you never know who has this.
thanks Mary 23 w/cf

 

[Scarlett81]

I'll think about it and get back to you.
It sucks were in the situation of infection control-but I guess we just have to make the best of it. You certainly sound like you are doing that!
I'm thinking about you.