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Talked about CF in class today

JennifersHope

New member
I am currently in my Peds rotation, and today for lecture are topics were Sickle Cell disease and CF.....

First they lectured on CF and my teacher did a good job, of course the class knows I have it, so they started out treading lightly on the questions....

She defined CF has a Progressive Multi-organ genetic disease that is fatal..... nothing new to me, didn't shock me...but as she was lecturing on treatments and meds.. (btw, the class has to learn the most common CF meds which I think is pretty awesome) the class started asking more and more questions.. Before you know it the teacher turned it over to ME.. HA

I answered as best as I could, It was my forum to tell, I didn't care so much about me, but it was most exciting to tell them about you guys, about my friend John.. and the amazing cost that comes with this disease and how much of our life is robbed from us by having to do treatments....

Mostly I think they were shocked by the cost.. they really had no idea... they didn't know that ppl could be turned down for a transplant in this country because of money...

It was amazing... they asked about support groups for CF, I explained about cross contamination, and how I must be careful that I never work with Peds patients with CF...

Anyway, I really feel like my class has a much better idea of what a CF goes though.. they have seen me come to class with IVs before, they know I am always coughing..I went on to explain about why CFers and other ppl with chronic disease are demanding about having the nurses NOT be late when it comes to bringing meds and treatments.. they were real receptive..

Anyway, none of the students asked about the life expectancy... but it was in our notes....as my teacher went on to speak of Sickle Cell disease, which I would never ever want btw for the record......anyway the students asked about the life expectancy of ppl with Sickle Cell, my teacher went on to say, " OH it is much better then CF .. they live to at least 40...the other disease.. is way worse... (meaning CF) and very fatal...she said ppl with that disease are dead before 40.. to which I made a few jokes about......cause I didn't know what else to say...The whole class was silent after that and I got a few "pat on the backs" after class.

Anyway, my point is, CF awareness hopefully got spread today, and just maybe some of these future nurses will be more sensitive to a CFer.


Jennifer
 

thelizardqueen

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennifersHope</b></i>

the other disease.. is way worse... (meaning CF) and very fatal...she said ppl with that disease are dead before 40...</end quote></div>

That's awesome that some awareness got spread today. I'm surprised at just how little some people know about CF.

That being said - good to know that I only have till I'm 40 - cause people don't live past 40 according to the doctor.<img src="i/expressions/face-icon-small-wink.gif" border="0">
 

JennifersHope

New member
Hey I was impressed they didn't say it was a childhood disease and that the kid won't see adulthood...That is what most ppl think anyway.. so I was happy with the progress...

We all know they have no idea how long any of us will live.
But for me, I don't want to suffer, so soon as my life starts to really suck in quality, I hope I die fast...

Jennifer
 

JustDucky

New member
Jenn, way to go!! I always feel that knowledge is power, the more people know, the betther they can understand it. When I told my retired teacher I had CF (I happened to bump into her after Iwatched my daughter's play), she said "but isn't that diagnosed when you are a kid?" So, I sat down with her and told her that it wasn't always the case. YEs, most are diagnosed as infants and children, but then there are the odd ones like myself where my symptoms as a child were mild and no doc really suspected it until I got older and my symptoms became much more pronounced. Then the CF testing began...still awaiting the mutations, I have rare ones the docs suspect but based on my clinical values, the docs diagnosed me and are treating me as such. Needless to say, it always blows people away when I say that I was just diagnosed last year!
Again Kudos to you Jenn, keep up the good work. I know you will be an awesome nurse!
Hugs, the other Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
6

65rosessamurai

Guest
Sean,
What does the movie "Full Metal Jacket" have to do with this thread?

Jen, it's great to know some nurses will become much better because they had already were exposed to CF from something other than a book, or 'just a lecture'.
On the contrary, I don't think my brother-in-law has a full concept of CF, he was a medical Army nurse, so wouldn't see any cf'rs in combat. Unfortunately, I'm too mild for him to get a shocker as to what impact CF can really have.
But, good job for doing your part in spreading the word--I'll bet you feel good after that!
 

Emily65Roses

New member
I always do that when given the chance too. When we got to genetics in bio in 10th grade... I stopped after class to tell my teacher that if he wanted, I'd be happy to do a little presentation, Q&A on CF. He said it was a good idea, was happy to let me. And so I did. I told them about it, brought in some props (neb pieces, my enzyme bottle since I had it on me anyway). They all seemed fairly interested. Especially for sophomores in high school.

I love doing that. I'm so glad they gave you the chance!! And I'm glad you took them up on it!!!!!! <img src="i/expressions/face-icon-small-happy.gif" border="0"> *is proud*
 

anonymous

New member
when i was about 13 cf came up in a bio book it was really old and even shocked me never mind my friends at seeing it described as childhood illness, I got some strange looks that day, I was expected to drop dead.

20 w cf new to the site
 

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

I always do that when given the chance too. When we got to genetics in bio in 10th grade... I stopped after class to tell my teacher that if he wanted, I'd be happy to do a little presentation, Q&A on CF. He said it was a good idea, was happy to let me. And so I did. I told them about it, brought in some props (neb pieces, my enzyme bottle since I had it on me anyway). They all seemed fairly interested. Especially for sophomores in high school.



Emily, wow you were very confident for a high school kid. My students are not that forthcoming about their personal issues. Good for you. What better way to learn a subject than from personal experience. I was wondering how my son will handle it when he studies cf in biology next year. I'm guessing he will crawl under the desk.
 
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