Question for all

[Marjolein]

I've got a question for all of you.
A CF doctor from the childrens clinic i used to go to called me about 2 months ago. And said that at their university of medicine they are having a special topics week(s) and that it's about CF. He was going to give one lecture and asked if i wanted to come too. Explain about my CF, what happened in my life till now. And how i feel about everthing too.
We had a long talk on the phone last friday and in the end he asked if there was something i wanted to say in the end of the lecture. Something all future doctors should know.

So my question for you is, do you have any suggestion on what i'd say there?

I think i'm going to say something in the region of how most children with CF grow up very quickly, that most of them are emotionally much older for their age.
And that they know a lot about CF and their body. That doctors should ALWAYS listen too the CFer. The patient knows best.

Any suggestions are welcome!

Thanks in advance!!!

 

[Marjolein]

I've got a question for all of you.
A CF doctor from the childrens clinic i used to go to called me about 2 months ago. And said that at their university of medicine they are having a special topics week(s) and that it's about CF. He was going to give one lecture and asked if i wanted to come too. Explain about my CF, what happened in my life till now. And how i feel about everthing too.
We had a long talk on the phone last friday and in the end he asked if there was something i wanted to say in the end of the lecture. Something all future doctors should know.

So my question for you is, do you have any suggestion on what i'd say there?

I think i'm going to say something in the region of how most children with CF grow up very quickly, that most of them are emotionally much older for their age.
And that they know a lot about CF and their body. That doctors should ALWAYS listen too the CFer. The patient knows best.

Any suggestions are welcome!

Thanks in advance!!!

 

[Marjolein]

I've got a question for all of you.
A CF doctor from the childrens clinic i used to go to called me about 2 months ago. And said that at their university of medicine they are having a special topics week(s) and that it's about CF. He was going to give one lecture and asked if i wanted to come too. Explain about my CF, what happened in my life till now. And how i feel about everthing too.
We had a long talk on the phone last friday and in the end he asked if there was something i wanted to say in the end of the lecture. Something all future doctors should know.

So my question for you is, do you have any suggestion on what i'd say there?

I think i'm going to say something in the region of how most children with CF grow up very quickly, that most of them are emotionally much older for their age.
And that they know a lot about CF and their body. That doctors should ALWAYS listen too the CFer. The patient knows best.

Any suggestions are welcome!

Thanks in advance!!!

 

[ladybug]

What a GREAT opportunity, Marjolein!! <b>I hope you're feeling great, btw!!!</b>

I think what you're planning on saying sounds awesome! I personally would maybe say something about CF not just being just a childhood disease anymore and that doctors from all specialties may want to become more aquainted with it since odds are good they'll see one of us someday for things like CFRD, arthritis, depression, etc.... Its kinda along the lines of what you're already going to say, but the fact is many docs still don't know anything about CF, so unless you're at a CF center with a full team of CF specialists, you may not get appropriate care. I personally think that needs to change so we can feel the ER docs, endocrinologists, psychologists, etc. at least know a bit about CF if we need to see them instead of our CF team.

Either way, I'm sure you'll be GREAT! Please keep us posted how it goes!

Take care,

 

[ladybug]

What a GREAT opportunity, Marjolein!! <b>I hope you're feeling great, btw!!!</b>

I think what you're planning on saying sounds awesome! I personally would maybe say something about CF not just being just a childhood disease anymore and that doctors from all specialties may want to become more aquainted with it since odds are good they'll see one of us someday for things like CFRD, arthritis, depression, etc.... Its kinda along the lines of what you're already going to say, but the fact is many docs still don't know anything about CF, so unless you're at a CF center with a full team of CF specialists, you may not get appropriate care. I personally think that needs to change so we can feel the ER docs, endocrinologists, psychologists, etc. at least know a bit about CF if we need to see them instead of our CF team.

Either way, I'm sure you'll be GREAT! Please keep us posted how it goes!

Take care,

 

[ladybug]

What a GREAT opportunity, Marjolein!! <b>I hope you're feeling great, btw!!!</b>

I think what you're planning on saying sounds awesome! I personally would maybe say something about CF not just being just a childhood disease anymore and that doctors from all specialties may want to become more aquainted with it since odds are good they'll see one of us someday for things like CFRD, arthritis, depression, etc.... Its kinda along the lines of what you're already going to say, but the fact is many docs still don't know anything about CF, so unless you're at a CF center with a full team of CF specialists, you may not get appropriate care. I personally think that needs to change so we can feel the ER docs, endocrinologists, psychologists, etc. at least know a bit about CF if we need to see them instead of our CF team.

Either way, I'm sure you'll be GREAT! Please keep us posted how it goes!

Take care,

 

[Marjolein]

Thanks for your comment Sonia. You are right. I've thought about that too and will be mentioning that for sure.

I'm am doing good. Have had a cold for a couple of weeks though and started coughing more with some mucous coming up too (still white though, soo good to see <img src="i/expressions/face-icon-small-smile.gif" border="0">)about 2 weeks ago. I was at my tx clinic last week and my x-rays were good, lungs look clear. And they sound clear too. So it's my upper airways, most likely from my sinusses. I am on Zithromax now. For the 5th day now, and i think it is beginning to work. I'm couging less today, so hopefully that's a good sign.

 

[Marjolein]

Thanks for your comment Sonia. You are right. I've thought about that too and will be mentioning that for sure.

I'm am doing good. Have had a cold for a couple of weeks though and started coughing more with some mucous coming up too (still white though, soo good to see <img src="i/expressions/face-icon-small-smile.gif" border="0">)about 2 weeks ago. I was at my tx clinic last week and my x-rays were good, lungs look clear. And they sound clear too. So it's my upper airways, most likely from my sinusses. I am on Zithromax now. For the 5th day now, and i think it is beginning to work. I'm couging less today, so hopefully that's a good sign.

 

[Marjolein]

Thanks for your comment Sonia. You are right. I've thought about that too and will be mentioning that for sure.

I'm am doing good. Have had a cold for a couple of weeks though and started coughing more with some mucous coming up too (still white though, soo good to see <img src="i/expressions/face-icon-small-smile.gif" border="0">)about 2 weeks ago. I was at my tx clinic last week and my x-rays were good, lungs look clear. And they sound clear too. So it's my upper airways, most likely from my sinusses. I am on Zithromax now. For the 5th day now, and i think it is beginning to work. I'm couging less today, so hopefully that's a good sign.

 

[ladybug]

I'm sorry to hear you've got a sinus thing going on. I hope it clears up soon! But, I'm sooooo happy to hear things are well otherwise and that you're coughing up white! WOW... I haven't seen white in years! So glad to hear from you.... I always wonder about you and wish you well.

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

 

[ladybug]

I'm sorry to hear you've got a sinus thing going on. I hope it clears up soon! But, I'm sooooo happy to hear things are well otherwise and that you're coughing up white! WOW... I haven't seen white in years! So glad to hear from you.... I always wonder about you and wish you well.

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

 

[ladybug]

I'm sorry to hear you've got a sinus thing going on. I hope it clears up soon! But, I'm sooooo happy to hear things are well otherwise and that you're coughing up white! WOW... I haven't seen white in years! So glad to hear from you.... I always wonder about you and wish you well.

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

 

[MYBOY]

Hey I think that is a great opportunity. I just wanted to say good luck and I would love to read your speech if you want to post it. For us mothers of young cfers it's kinda nice to read about others and what they go through - so we have an idea of how people cope with this. Thanks and good luck!!

 

[MYBOY]

Hey I think that is a great opportunity. I just wanted to say good luck and I would love to read your speech if you want to post it. For us mothers of young cfers it's kinda nice to read about others and what they go through - so we have an idea of how people cope with this. Thanks and good luck!!

 

[MYBOY]

Hey I think that is a great opportunity. I just wanted to say good luck and I would love to read your speech if you want to post it. For us mothers of young cfers it's kinda nice to read about others and what they go through - so we have an idea of how people cope with this. Thanks and good luck!!

 

[Emily65Roses]

What you're planning on = perfect. I love that you want to add a CFer knows their body, so LISTEN TO THEM. Period.

I personally would say that... and... "Remember, a CFer is not just a walking case of CF. It's also a PERSON and when treatment A might be best for the CF, it may not be best for the PERSON."

Just basically get across the idea that they can't treat each patient like the only thing they live with is CF. Like they don't have school, work, families, boyfriends/girlfriends, etc. They NEED to keep that in mind.

 

[Emily65Roses]

What you're planning on = perfect. I love that you want to add a CFer knows their body, so LISTEN TO THEM. Period.

I personally would say that... and... "Remember, a CFer is not just a walking case of CF. It's also a PERSON and when treatment A might be best for the CF, it may not be best for the PERSON."

Just basically get across the idea that they can't treat each patient like the only thing they live with is CF. Like they don't have school, work, families, boyfriends/girlfriends, etc. They NEED to keep that in mind.

 

[Emily65Roses]

What you're planning on = perfect. I love that you want to add a CFer knows their body, so LISTEN TO THEM. Period.

I personally would say that... and... "Remember, a CFer is not just a walking case of CF. It's also a PERSON and when treatment A might be best for the CF, it may not be best for the PERSON."

Just basically get across the idea that they can't treat each patient like the only thing they live with is CF. Like they don't have school, work, families, boyfriends/girlfriends, etc. They NEED to keep that in mind.

 

[Marjolein]

I have had my talk <img src="i/expressions/face-icon-small-smile.gif" border="0"> It was last wednesday. And it went really good. Though it only lasted for 45 minutes and i have the feeling i didn't even say half of what i wanted! Made me think about how much actually happens in our lives! We did the talk together. First he asked me when and how i was diagnosed so i told that story and he would go into the medical details and ask the students some questions too. Then he would ask me something again or i would comment on something, and so on.
It went really well. When it was all finished he said he thought it went well too and and that he was contemplating asking me again for next year, ofcourse i said he could <img src="i/expressions/face-icon-small-smile.gif" border="0"> Though i hope we can have more time then!

Tanner's mom, i'm sorry i can't sent you my story... I didn't write anything down. Everything is in my head, sometimes a little too much <img src="i/expressions/face-icon-small-wink.gif" border="0"> If you have any questions, feel free to ask them. And i will try to answer them, either here, or by email.

Thanks again to everyone who commented on me question!

 

[Marjolein]

I have had my talk <img src="i/expressions/face-icon-small-smile.gif" border="0"> It was last wednesday. And it went really good. Though it only lasted for 45 minutes and i have the feeling i didn't even say half of what i wanted! Made me think about how much actually happens in our lives! We did the talk together. First he asked me when and how i was diagnosed so i told that story and he would go into the medical details and ask the students some questions too. Then he would ask me something again or i would comment on something, and so on.
It went really well. When it was all finished he said he thought it went well too and and that he was contemplating asking me again for next year, ofcourse i said he could <img src="i/expressions/face-icon-small-smile.gif" border="0"> Though i hope we can have more time then!

Tanner's mom, i'm sorry i can't sent you my story... I didn't write anything down. Everything is in my head, sometimes a little too much <img src="i/expressions/face-icon-small-wink.gif" border="0"> If you have any questions, feel free to ask them. And i will try to answer them, either here, or by email.

Thanks again to everyone who commented on me question!