She said CF would be perfect because that's the day they discuss neuromuscular dysfunction and goes on to ask what type of CP he has... I'll have my MIL ask for clarification, but would be a little weird to show up to a classroom to talk about CF and find out they were thinking we're going to talk about CP...
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Asked to talk to Nursing Students about CF
- Thread starter Ratatosk
- Start date
Let me tell you... I have first hand experience with medical personel not knowing WTF CF is and/or confusing it with something VERY different. Makes me want to scream!!!
Two recent experiences come to mind:
1. I was talking to a CNA that works next door giving therapy to a boy with MD/MS and I mentioned that I had CF. He said, oh you should know then what he has to deal with. Well, no... I don't know AT ALL what he has to deal with! WTF!?
2. I went to a TMJ surgeon and the fact I have CF came up in discussion... He said he thought only MALES get CF... WTF?!?! I explained to him that everyone get get CF. He proceeded to tell me that must be hemophilia "or something like that" that only males get. WTF?!?! Also when I said I've had this problem for like 15 years on and off, he asks me, "The Cystic Fibrosis?"... "NO, the TMJ!!!" WTF?!?! This doctor, I should mentioned, has a degree from Columbia and graduated cum laude!
Scary.
Two recent experiences come to mind:
1. I was talking to a CNA that works next door giving therapy to a boy with MD/MS and I mentioned that I had CF. He said, oh you should know then what he has to deal with. Well, no... I don't know AT ALL what he has to deal with! WTF!?
2. I went to a TMJ surgeon and the fact I have CF came up in discussion... He said he thought only MALES get CF... WTF?!?! I explained to him that everyone get get CF. He proceeded to tell me that must be hemophilia "or something like that" that only males get. WTF?!?! Also when I said I've had this problem for like 15 years on and off, he asks me, "The Cystic Fibrosis?"... "NO, the TMJ!!!" WTF?!?! This doctor, I should mentioned, has a degree from Columbia and graduated cum laude!
Scary.
Let me tell you... I have first hand experience with medical personel not knowing WTF CF is and/or confusing it with something VERY different. Makes me want to scream!!!
Two recent experiences come to mind:
1. I was talking to a CNA that works next door giving therapy to a boy with MD/MS and I mentioned that I had CF. He said, oh you should know then what he has to deal with. Well, no... I don't know AT ALL what he has to deal with! WTF!?
2. I went to a TMJ surgeon and the fact I have CF came up in discussion... He said he thought only MALES get CF... WTF?!?! I explained to him that everyone get get CF. He proceeded to tell me that must be hemophilia "or something like that" that only males get. WTF?!?! Also when I said I've had this problem for like 15 years on and off, he asks me, "The Cystic Fibrosis?"... "NO, the TMJ!!!" WTF?!?! This doctor, I should mentioned, has a degree from Columbia and graduated cum laude!
Scary.
Two recent experiences come to mind:
1. I was talking to a CNA that works next door giving therapy to a boy with MD/MS and I mentioned that I had CF. He said, oh you should know then what he has to deal with. Well, no... I don't know AT ALL what he has to deal with! WTF!?
2. I went to a TMJ surgeon and the fact I have CF came up in discussion... He said he thought only MALES get CF... WTF?!?! I explained to him that everyone get get CF. He proceeded to tell me that must be hemophilia "or something like that" that only males get. WTF?!?! Also when I said I've had this problem for like 15 years on and off, he asks me, "The Cystic Fibrosis?"... "NO, the TMJ!!!" WTF?!?! This doctor, I should mentioned, has a degree from Columbia and graduated cum laude!
Scary.
Let me tell you... I have first hand experience with medical personel not knowing WTF CF is and/or confusing it with something VERY different. Makes me want to scream!!!
Two recent experiences come to mind:
1. I was talking to a CNA that works next door giving therapy to a boy with MD/MS and I mentioned that I had CF. He said, oh you should know then what he has to deal with. Well, no... I don't know AT ALL what he has to deal with! WTF!?
2. I went to a TMJ surgeon and the fact I have CF came up in discussion... He said he thought only MALES get CF... WTF?!?! I explained to him that everyone get get CF. He proceeded to tell me that must be hemophilia "or something like that" that only males get. WTF?!?! Also when I said I've had this problem for like 15 years on and off, he asks me, "The Cystic Fibrosis?"... "NO, the TMJ!!!" WTF?!?! This doctor, I should mentioned, has a degree from Columbia and graduated cum laude!
Scary.
Two recent experiences come to mind:
1. I was talking to a CNA that works next door giving therapy to a boy with MD/MS and I mentioned that I had CF. He said, oh you should know then what he has to deal with. Well, no... I don't know AT ALL what he has to deal with! WTF!?
2. I went to a TMJ surgeon and the fact I have CF came up in discussion... He said he thought only MALES get CF... WTF?!?! I explained to him that everyone get get CF. He proceeded to tell me that must be hemophilia "or something like that" that only males get. WTF?!?! Also when I said I've had this problem for like 15 years on and off, he asks me, "The Cystic Fibrosis?"... "NO, the TMJ!!!" WTF?!?! This doctor, I should mentioned, has a degree from Columbia and graduated cum laude!
Scary.
I'm sorry I shouldn't laugh but all of this is so funny, especially considering past rants about family members.
We have one in particular that always tries to 'better' us about the kinds of meds she has been on for this bad cough she has had lately. Whatever - this is a contest I definitely don't want to 'win'.
BTW we haven't seen this person since Katy's diagnosis and she doesn't know it yet but we probably won't ever again. I'm not sure what she's got going on in her lungs but I know we don't want it.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
We have one in particular that always tries to 'better' us about the kinds of meds she has been on for this bad cough she has had lately. Whatever - this is a contest I definitely don't want to 'win'.
BTW we haven't seen this person since Katy's diagnosis and she doesn't know it yet but we probably won't ever again. I'm not sure what she's got going on in her lungs but I know we don't want it.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
I'm sorry I shouldn't laugh but all of this is so funny, especially considering past rants about family members.
We have one in particular that always tries to 'better' us about the kinds of meds she has been on for this bad cough she has had lately. Whatever - this is a contest I definitely don't want to 'win'.
BTW we haven't seen this person since Katy's diagnosis and she doesn't know it yet but we probably won't ever again. I'm not sure what she's got going on in her lungs but I know we don't want it.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
We have one in particular that always tries to 'better' us about the kinds of meds she has been on for this bad cough she has had lately. Whatever - this is a contest I definitely don't want to 'win'.
BTW we haven't seen this person since Katy's diagnosis and she doesn't know it yet but we probably won't ever again. I'm not sure what she's got going on in her lungs but I know we don't want it.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
I'm sorry I shouldn't laugh but all of this is so funny, especially considering past rants about family members.
We have one in particular that always tries to 'better' us about the kinds of meds she has been on for this bad cough she has had lately. Whatever - this is a contest I definitely don't want to 'win'.
BTW we haven't seen this person since Katy's diagnosis and she doesn't know it yet but we probably won't ever again. I'm not sure what she's got going on in her lungs but I know we don't want it.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
We have one in particular that always tries to 'better' us about the kinds of meds she has been on for this bad cough she has had lately. Whatever - this is a contest I definitely don't want to 'win'.
BTW we haven't seen this person since Katy's diagnosis and she doesn't know it yet but we probably won't ever again. I'm not sure what she's got going on in her lungs but I know we don't want it.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
JennifersHope
New member
Wow that is so strange.. They are obviously confused....BIG TIME
For us in nursing school. CF was on highlighted only because I had it... but really it was one of a thousand diseases I learned in school.. It isn't fair to expect a nurse that normally does not deal with CF to know about it...especially a CNA.. CNA's have a total of six weeks of class at best... and they don't learn about health conditions.. They learn how to take vital signs, bed baths, etc.
Not a whole lot of people in the general public have it so I wouldn't expect to many people to know..but certainly a nursing instructor should know CF and CP are not the same thing.
On a side note Lisa, if you do get to go and speak to the class... speaking from your heart will have the biggest impact.. (it always did on my class)
Every guest speaker I had in school.. I can remember everything they said word for word..
Let us know how it goes.
For us in nursing school. CF was on highlighted only because I had it... but really it was one of a thousand diseases I learned in school.. It isn't fair to expect a nurse that normally does not deal with CF to know about it...especially a CNA.. CNA's have a total of six weeks of class at best... and they don't learn about health conditions.. They learn how to take vital signs, bed baths, etc.
Not a whole lot of people in the general public have it so I wouldn't expect to many people to know..but certainly a nursing instructor should know CF and CP are not the same thing.
On a side note Lisa, if you do get to go and speak to the class... speaking from your heart will have the biggest impact.. (it always did on my class)
Every guest speaker I had in school.. I can remember everything they said word for word..
Let us know how it goes.
JennifersHope
New member
Wow that is so strange.. They are obviously confused....BIG TIME
For us in nursing school. CF was on highlighted only because I had it... but really it was one of a thousand diseases I learned in school.. It isn't fair to expect a nurse that normally does not deal with CF to know about it...especially a CNA.. CNA's have a total of six weeks of class at best... and they don't learn about health conditions.. They learn how to take vital signs, bed baths, etc.
Not a whole lot of people in the general public have it so I wouldn't expect to many people to know..but certainly a nursing instructor should know CF and CP are not the same thing.
On a side note Lisa, if you do get to go and speak to the class... speaking from your heart will have the biggest impact.. (it always did on my class)
Every guest speaker I had in school.. I can remember everything they said word for word..
Let us know how it goes.
For us in nursing school. CF was on highlighted only because I had it... but really it was one of a thousand diseases I learned in school.. It isn't fair to expect a nurse that normally does not deal with CF to know about it...especially a CNA.. CNA's have a total of six weeks of class at best... and they don't learn about health conditions.. They learn how to take vital signs, bed baths, etc.
Not a whole lot of people in the general public have it so I wouldn't expect to many people to know..but certainly a nursing instructor should know CF and CP are not the same thing.
On a side note Lisa, if you do get to go and speak to the class... speaking from your heart will have the biggest impact.. (it always did on my class)
Every guest speaker I had in school.. I can remember everything they said word for word..
Let us know how it goes.
JennifersHope
New member
Wow that is so strange.. They are obviously confused....BIG TIME
For us in nursing school. CF was on highlighted only because I had it... but really it was one of a thousand diseases I learned in school.. It isn't fair to expect a nurse that normally does not deal with CF to know about it...especially a CNA.. CNA's have a total of six weeks of class at best... and they don't learn about health conditions.. They learn how to take vital signs, bed baths, etc.
Not a whole lot of people in the general public have it so I wouldn't expect to many people to know..but certainly a nursing instructor should know CF and CP are not the same thing.
On a side note Lisa, if you do get to go and speak to the class... speaking from your heart will have the biggest impact.. (it always did on my class)
Every guest speaker I had in school.. I can remember everything they said word for word..
Let us know how it goes.
For us in nursing school. CF was on highlighted only because I had it... but really it was one of a thousand diseases I learned in school.. It isn't fair to expect a nurse that normally does not deal with CF to know about it...especially a CNA.. CNA's have a total of six weeks of class at best... and they don't learn about health conditions.. They learn how to take vital signs, bed baths, etc.
Not a whole lot of people in the general public have it so I wouldn't expect to many people to know..but certainly a nursing instructor should know CF and CP are not the same thing.
On a side note Lisa, if you do get to go and speak to the class... speaking from your heart will have the biggest impact.. (it always did on my class)
Every guest speaker I had in school.. I can remember everything they said word for word..
Let us know how it goes.
When MIL brought it up last year, she said the head of the nursing program wondered if we'd be interested in talking about it, because while they only touch on it briefly, she's found that Cystic Fibrosis is a disease the students have difficulty understanding and it's be great to have someone explain it first hand.
And we said that we'd love to come talk about it -- especially because DS was diagnosed before newborn screening and it took awhile to figure out there was anything wrong with him.
BTW, when I got my tetanus/pertussis vaccine last summer, I mentioned to the LPN giving me the shot how wonderul it was there was now an adult vaccine for whooping cough 'cuz my son has CF and she asked me about CP. After that, I stopped using CF in casual conversation and say cystic fibrosis.
And we said that we'd love to come talk about it -- especially because DS was diagnosed before newborn screening and it took awhile to figure out there was anything wrong with him.
BTW, when I got my tetanus/pertussis vaccine last summer, I mentioned to the LPN giving me the shot how wonderul it was there was now an adult vaccine for whooping cough 'cuz my son has CF and she asked me about CP. After that, I stopped using CF in casual conversation and say cystic fibrosis.
When MIL brought it up last year, she said the head of the nursing program wondered if we'd be interested in talking about it, because while they only touch on it briefly, she's found that Cystic Fibrosis is a disease the students have difficulty understanding and it's be great to have someone explain it first hand.
And we said that we'd love to come talk about it -- especially because DS was diagnosed before newborn screening and it took awhile to figure out there was anything wrong with him.
BTW, when I got my tetanus/pertussis vaccine last summer, I mentioned to the LPN giving me the shot how wonderul it was there was now an adult vaccine for whooping cough 'cuz my son has CF and she asked me about CP. After that, I stopped using CF in casual conversation and say cystic fibrosis.
And we said that we'd love to come talk about it -- especially because DS was diagnosed before newborn screening and it took awhile to figure out there was anything wrong with him.
BTW, when I got my tetanus/pertussis vaccine last summer, I mentioned to the LPN giving me the shot how wonderul it was there was now an adult vaccine for whooping cough 'cuz my son has CF and she asked me about CP. After that, I stopped using CF in casual conversation and say cystic fibrosis.
When MIL brought it up last year, she said the head of the nursing program wondered if we'd be interested in talking about it, because while they only touch on it briefly, she's found that Cystic Fibrosis is a disease the students have difficulty understanding and it's be great to have someone explain it first hand.
And we said that we'd love to come talk about it -- especially because DS was diagnosed before newborn screening and it took awhile to figure out there was anything wrong with him.
BTW, when I got my tetanus/pertussis vaccine last summer, I mentioned to the LPN giving me the shot how wonderul it was there was now an adult vaccine for whooping cough 'cuz my son has CF and she asked me about CP. After that, I stopped using CF in casual conversation and say cystic fibrosis.
And we said that we'd love to come talk about it -- especially because DS was diagnosed before newborn screening and it took awhile to figure out there was anything wrong with him.
BTW, when I got my tetanus/pertussis vaccine last summer, I mentioned to the LPN giving me the shot how wonderul it was there was now an adult vaccine for whooping cough 'cuz my son has CF and she asked me about CP. After that, I stopped using CF in casual conversation and say cystic fibrosis.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennifersHope</b></i>
It isn't fair to expect a nurse that normally does not deal with CF to know about it...especially a CNA.. CNA's have a total of six weeks of class at best... and they don't learn about health conditions.. They learn how to take vital signs, bed baths, etc.
q]
Jennifer,
I sort of agree with you, but also think its the medical community's responsibility to provide proper training (especially to an M.D. that deals with bone and joint conditions as many cfp will someday develop such conditions). I am mostly upset with those who TRAIN these doctors and CNA's and nurses, etc.
I also think if you don't know what something is, DO NOT pretend to me like you do... for example, when I asked the CNA if he knew what cystic fibrosis was, he said, "oh yes, absolutely..." and then went on to make the comment that I should understand how a MS patient should feel. I realize he probably has little or no knowledge of CF, but at least do not assume everything with an accronym is a muscular disorder.
Also, the facial surgeon also said he "knew" what cystic fibrosis was and proceeded to tell me how he thought only males could get it. At this point, I was able to educate him, but at the same time I was let down that a prestigious school for medicine had not better trained him.
CF is no longer that rare as many of us are living far longer lives and the medical community is having to "deal" with many more of us having "normal" people complications. I think the medical community has a responsibility to better educate people that they may be dealing with CF and its complications (or other complications that come about from having CF) since so many of us ARE getting older and WILL deal with the "outside" medical community at many stages in our lives. For example, docs all seem to know what diabetes is since it is a controllabe (in most cases) disease that most docs will eventually have a patient with it. Well, for things such as CF, why can't we make THAT commonplace in U.S. medicine? Why is it my responsibility to educate nearly every doctor that I see who is NOT a CF specialist on my condition? Does a diabetic have to go in and explain thier condition to everyone who is not an endo. doc? I doubt it.
I just wish it were getting better as we are living longer and that the medical community accepted that, but to be honest I seem to have to explain it more NOW then I ever did as a child (cause its a "childhood" disease, right?) and that disheartens me.
As for Liza's original post... I have friends that ask why I can't go smokey places or assume I can. Its like they know I have CF, but do not know or care to educate themselves on it at all. I don't have family that don't seem to remember what CF is, but I can imagine your frustration at that as well.
I wish I had better advice to you, but I agree that speaking from your heart to her is the best route. If you show up to talk about something they think is CP and is in fact CF, you may leave everyone more confused than necessary. Like, in my mind, if someone would come to talk to my class about CF and it was a class on neuromuscular disorders, I would find myself constantly trying to make the connection! lol Although, as I referenced in my above post, maybe people NEED to hear more about CF, so you could always go and just tell them it has nothing to do with CP and here is some info. on it so at least you could get the info. out there. Sneaky sneaky.... lol
Good luck!
It isn't fair to expect a nurse that normally does not deal with CF to know about it...especially a CNA.. CNA's have a total of six weeks of class at best... and they don't learn about health conditions.. They learn how to take vital signs, bed baths, etc.
q]
Jennifer,
I sort of agree with you, but also think its the medical community's responsibility to provide proper training (especially to an M.D. that deals with bone and joint conditions as many cfp will someday develop such conditions). I am mostly upset with those who TRAIN these doctors and CNA's and nurses, etc.
I also think if you don't know what something is, DO NOT pretend to me like you do... for example, when I asked the CNA if he knew what cystic fibrosis was, he said, "oh yes, absolutely..." and then went on to make the comment that I should understand how a MS patient should feel. I realize he probably has little or no knowledge of CF, but at least do not assume everything with an accronym is a muscular disorder.
Also, the facial surgeon also said he "knew" what cystic fibrosis was and proceeded to tell me how he thought only males could get it. At this point, I was able to educate him, but at the same time I was let down that a prestigious school for medicine had not better trained him.
CF is no longer that rare as many of us are living far longer lives and the medical community is having to "deal" with many more of us having "normal" people complications. I think the medical community has a responsibility to better educate people that they may be dealing with CF and its complications (or other complications that come about from having CF) since so many of us ARE getting older and WILL deal with the "outside" medical community at many stages in our lives. For example, docs all seem to know what diabetes is since it is a controllabe (in most cases) disease that most docs will eventually have a patient with it. Well, for things such as CF, why can't we make THAT commonplace in U.S. medicine? Why is it my responsibility to educate nearly every doctor that I see who is NOT a CF specialist on my condition? Does a diabetic have to go in and explain thier condition to everyone who is not an endo. doc? I doubt it.
I just wish it were getting better as we are living longer and that the medical community accepted that, but to be honest I seem to have to explain it more NOW then I ever did as a child (cause its a "childhood" disease, right?) and that disheartens me.
As for Liza's original post... I have friends that ask why I can't go smokey places or assume I can. Its like they know I have CF, but do not know or care to educate themselves on it at all. I don't have family that don't seem to remember what CF is, but I can imagine your frustration at that as well.
I wish I had better advice to you, but I agree that speaking from your heart to her is the best route. If you show up to talk about something they think is CP and is in fact CF, you may leave everyone more confused than necessary. Like, in my mind, if someone would come to talk to my class about CF and it was a class on neuromuscular disorders, I would find myself constantly trying to make the connection! lol Although, as I referenced in my above post, maybe people NEED to hear more about CF, so you could always go and just tell them it has nothing to do with CP and here is some info. on it so at least you could get the info. out there. Sneaky sneaky.... lol
Good luck!