Question about telling your parents all about CF

blindhearted · Dec 25, 2007

Its okay to bring ur dad to an appointment, but make sure u have a doctor that has a good bedside manner. You dont want a doctor who is way to blunt to ur parents. I took my dad to meet my doctor the first time I went...bad idea. My dad, as I said above has bad nerves and things have to be told to him in a way that wont be too upsetting. My doctor looked straight at my parents, after meeting me once, told them "Assume I'm right and u're (as in me) was wrong, which is normally the case. You will be on a transplant list, if not already having one within 5 yrs." Basically my dad heard "ur little girl is on the edge of death and it will happen in 5 yrs." It took me a while to convice my dad that doctors have been wrong before and he is now. The doctor said that 4 yrs ago and so far (knock on wood) my health has been stable. So, if you do take him, make sure ur doctors know how to have some compassion when explaining stuff. It makes a difference on how your dad might take it.

blindhearted · Dec 25, 2007

Its okay to bring ur dad to an appointment, but make sure u have a doctor that has a good bedside manner. You dont want a doctor who is way to blunt to ur parents. I took my dad to meet my doctor the first time I went...bad idea. My dad, as I said above has bad nerves and things have to be told to him in a way that wont be too upsetting. My doctor looked straight at my parents, after meeting me once, told them "Assume I'm right and u're (as in me) was wrong, which is normally the case. You will be on a transplant list, if not already having one within 5 yrs." Basically my dad heard "ur little girl is on the edge of death and it will happen in 5 yrs." It took me a while to convice my dad that doctors have been wrong before and he is now. The doctor said that 4 yrs ago and so far (knock on wood) my health has been stable. So, if you do take him, make sure ur doctors know how to have some compassion when explaining stuff. It makes a difference on how your dad might take it.

blindhearted · Dec 25, 2007

Its okay to bring ur dad to an appointment, but make sure u have a doctor that has a good bedside manner. You dont want a doctor who is way to blunt to ur parents. I took my dad to meet my doctor the first time I went...bad idea. My dad, as I said above has bad nerves and things have to be told to him in a way that wont be too upsetting. My doctor looked straight at my parents, after meeting me once, told them "Assume I'm right and u're (as in me) was wrong, which is normally the case. You will be on a transplant list, if not already having one within 5 yrs." Basically my dad heard "ur little girl is on the edge of death and it will happen in 5 yrs." It took me a while to convice my dad that doctors have been wrong before and he is now. The doctor said that 4 yrs ago and so far (knock on wood) my health has been stable. So, if you do take him, make sure ur doctors know how to have some compassion when explaining stuff. It makes a difference on how your dad might take it.

blindhearted · Dec 25, 2007

Its okay to bring ur dad to an appointment, but make sure u have a doctor that has a good bedside manner. You dont want a doctor who is way to blunt to ur parents. I took my dad to meet my doctor the first time I went...bad idea. My dad, as I said above has bad nerves and things have to be told to him in a way that wont be too upsetting. My doctor looked straight at my parents, after meeting me once, told them "Assume I'm right and u're (as in me) was wrong, which is normally the case. You will be on a transplant list, if not already having one within 5 yrs." Basically my dad heard "ur little girl is on the edge of death and it will happen in 5 yrs." It took me a while to convice my dad that doctors have been wrong before and he is now. The doctor said that 4 yrs ago and so far (knock on wood) my health has been stable. So, if you do take him, make sure ur doctors know how to have some compassion when explaining stuff. It makes a difference on how your dad might take it.

blindhearted · Dec 25, 2007

Its okay to bring ur dad to an appointment, but make sure u have a doctor that has a good bedside manner. You dont want a doctor who is way to blunt to ur parents. I took my dad to meet my doctor the first time I went...bad idea. My dad, as I said above has bad nerves and things have to be told to him in a way that wont be too upsetting. My doctor looked straight at my parents, after meeting me once, told them "Assume I'm right and u're (as in me) was wrong, which is normally the case. You will be on a transplant list, if not already having one within 5 yrs." Basically my dad heard "ur little girl is on the edge of death and it will happen in 5 yrs." It took me a while to convice my dad that doctors have been wrong before and he is now. The doctor said that 4 yrs ago and so far (knock on wood) my health has been stable. So, if you do take him, make sure ur doctors know how to have some compassion when explaining stuff. It makes a difference on how your dad might take it.

JennifersHope · Dec 25, 2007

I think this is such a great topic.. I have the most amazing CF support anyone could every dream of BUT it is not from my natural mother... my dad more so... but I was dx at 29..

My mother to this day is clueless about CF.. she can't even get the name right which makes me giggle that she is so blinded to the stressors that come with it.. I was always sick as a child, I remember my mom and dad being upset with me because I was always in the bathroom for my stomach pain, and having them think I was just trying to get out of things etc.....

My dad would have been clueless but I lived with him for five years while I went to nursing school and got my life back on track.. He at least understands the name of the disease I have and he has seen me go through hell and back with treatments, hospital stays and nursing school...

Neither one of my parents understand, really understand what CF is, or the toll it takes on me emotionally, physically and stuff.

My dad is such a nervous person that I can't really say anything.. I kind of take Emily's advice and set the tone for my day, like right now I am on IVs, he doesn't know I need O2 yet but I presented it in a less then truthful way and told him the IVs were so good and preventative and stuff.. Left out all the negative..

My goal in life is to outlive my dad.. or at least his memory......

I do have close family that know the details of CF to much so.. they read this website, but more importantly they educated themself and are a huge support to me

I decided not to get my parents to much further involved at this point because it is just to stressful for them.. and in turn me because I worry to much

JennifersHope · Dec 25, 2007

I think this is such a great topic.. I have the most amazing CF support anyone could every dream of BUT it is not from my natural mother... my dad more so... but I was dx at 29..

My mother to this day is clueless about CF.. she can't even get the name right which makes me giggle that she is so blinded to the stressors that come with it.. I was always sick as a child, I remember my mom and dad being upset with me because I was always in the bathroom for my stomach pain, and having them think I was just trying to get out of things etc.....

My dad would have been clueless but I lived with him for five years while I went to nursing school and got my life back on track.. He at least understands the name of the disease I have and he has seen me go through hell and back with treatments, hospital stays and nursing school...

Neither one of my parents understand, really understand what CF is, or the toll it takes on me emotionally, physically and stuff.

My dad is such a nervous person that I can't really say anything.. I kind of take Emily's advice and set the tone for my day, like right now I am on IVs, he doesn't know I need O2 yet but I presented it in a less then truthful way and told him the IVs were so good and preventative and stuff.. Left out all the negative..

My goal in life is to outlive my dad.. or at least his memory......

I do have close family that know the details of CF to much so.. they read this website, but more importantly they educated themself and are a huge support to me

I decided not to get my parents to much further involved at this point because it is just to stressful for them.. and in turn me because I worry to much

JennifersHope · Dec 25, 2007

I think this is such a great topic.. I have the most amazing CF support anyone could every dream of BUT it is not from my natural mother... my dad more so... but I was dx at 29..

My mother to this day is clueless about CF.. she can't even get the name right which makes me giggle that she is so blinded to the stressors that come with it.. I was always sick as a child, I remember my mom and dad being upset with me because I was always in the bathroom for my stomach pain, and having them think I was just trying to get out of things etc.....

My dad would have been clueless but I lived with him for five years while I went to nursing school and got my life back on track.. He at least understands the name of the disease I have and he has seen me go through hell and back with treatments, hospital stays and nursing school...

Neither one of my parents understand, really understand what CF is, or the toll it takes on me emotionally, physically and stuff.

My dad is such a nervous person that I can't really say anything.. I kind of take Emily's advice and set the tone for my day, like right now I am on IVs, he doesn't know I need O2 yet but I presented it in a less then truthful way and told him the IVs were so good and preventative and stuff.. Left out all the negative..

My goal in life is to outlive my dad.. or at least his memory......

I do have close family that know the details of CF to much so.. they read this website, but more importantly they educated themself and are a huge support to me

I decided not to get my parents to much further involved at this point because it is just to stressful for them.. and in turn me because I worry to much

JennifersHope · Dec 25, 2007

I think this is such a great topic.. I have the most amazing CF support anyone could every dream of BUT it is not from my natural mother... my dad more so... but I was dx at 29..

My mother to this day is clueless about CF.. she can't even get the name right which makes me giggle that she is so blinded to the stressors that come with it.. I was always sick as a child, I remember my mom and dad being upset with me because I was always in the bathroom for my stomach pain, and having them think I was just trying to get out of things etc.....

My dad would have been clueless but I lived with him for five years while I went to nursing school and got my life back on track.. He at least understands the name of the disease I have and he has seen me go through hell and back with treatments, hospital stays and nursing school...

Neither one of my parents understand, really understand what CF is, or the toll it takes on me emotionally, physically and stuff.

My dad is such a nervous person that I can't really say anything.. I kind of take Emily's advice and set the tone for my day, like right now I am on IVs, he doesn't know I need O2 yet but I presented it in a less then truthful way and told him the IVs were so good and preventative and stuff.. Left out all the negative..

My goal in life is to outlive my dad.. or at least his memory......

I do have close family that know the details of CF to much so.. they read this website, but more importantly they educated themself and are a huge support to me

I decided not to get my parents to much further involved at this point because it is just to stressful for them.. and in turn me because I worry to much

JennifersHope · Dec 25, 2007

I think this is such a great topic.. I have the most amazing CF support anyone could every dream of BUT it is not from my natural mother... my dad more so... but I was dx at 29..

My mother to this day is clueless about CF.. she can't even get the name right which makes me giggle that she is so blinded to the stressors that come with it.. I was always sick as a child, I remember my mom and dad being upset with me because I was always in the bathroom for my stomach pain, and having them think I was just trying to get out of things etc.....

My dad would have been clueless but I lived with him for five years while I went to nursing school and got my life back on track.. He at least understands the name of the disease I have and he has seen me go through hell and back with treatments, hospital stays and nursing school...

Neither one of my parents understand, really understand what CF is, or the toll it takes on me emotionally, physically and stuff.

My dad is such a nervous person that I can't really say anything.. I kind of take Emily's advice and set the tone for my day, like right now I am on IVs, he doesn't know I need O2 yet but I presented it in a less then truthful way and told him the IVs were so good and preventative and stuff.. Left out all the negative..

My goal in life is to outlive my dad.. or at least his memory......

I do have close family that know the details of CF to much so.. they read this website, but more importantly they educated themself and are a huge support to me

I decided not to get my parents to much further involved at this point because it is just to stressful for them.. and in turn me because I worry to much

bagged2drag · Dec 26, 2007

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

My Mom knew what she needed to know at the time. She doesnt know anything now.

<span class="FTHighlightFont">She is thinking like it was 30 years ago & all she says is "you beat the odds". Well yes as far as life expectancy, but not the CF itself which is what she likes to think.</span ft>

Its frustrating. I dont bother because it makes her too emotional & I cant handle it. My sisters & SIL are great about wanting the updates etc. So someone in my family knows.

HUGS'</end quote></div>

That sounds like my mom..to the "t". There has been a lot of change since then, and I know there is a lot to learn. I am always concerned about what to do when the my disease advances to the point I am no longer to fully care for myself. My parents are essentially clueless at this point. My girlfriend is so scared of the disease she is both afraid to learn about it and gets frustrated when I try explaining the details of it. The only one in my family that seems to care a whole lot to go out of the way is my youngest sister, who is a year older than I. In the last 7 years, her, and one of my close friends, is the only person who has ever gone to the hospital with me for a clinic checkup. She asks a lot of questions and tries to learn some. Of course, not being exposed to the details until the last number of years, she has a hard time comprehending it too. I do have to put all my faith into her though because she is the only one to go out of her way for me. In fact, she has went out of the way enough that she is my beneficiary for my life insurance and belongings. I know I can trust her.

bagged2drag · Dec 26, 2007

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

My Mom knew what she needed to know at the time. She doesnt know anything now.

<span class="FTHighlightFont">She is thinking like it was 30 years ago & all she says is "you beat the odds". Well yes as far as life expectancy, but not the CF itself which is what she likes to think.</span ft>

Its frustrating. I dont bother because it makes her too emotional & I cant handle it. My sisters & SIL are great about wanting the updates etc. So someone in my family knows.

HUGS'</end quote></div>

That sounds like my mom..to the "t". There has been a lot of change since then, and I know there is a lot to learn. I am always concerned about what to do when the my disease advances to the point I am no longer to fully care for myself. My parents are essentially clueless at this point. My girlfriend is so scared of the disease she is both afraid to learn about it and gets frustrated when I try explaining the details of it. The only one in my family that seems to care a whole lot to go out of the way is my youngest sister, who is a year older than I. In the last 7 years, her, and one of my close friends, is the only person who has ever gone to the hospital with me for a clinic checkup. She asks a lot of questions and tries to learn some. Of course, not being exposed to the details until the last number of years, she has a hard time comprehending it too. I do have to put all my faith into her though because she is the only one to go out of her way for me. In fact, she has went out of the way enough that she is my beneficiary for my life insurance and belongings. I know I can trust her.

bagged2drag · Dec 26, 2007

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

My Mom knew what she needed to know at the time. She doesnt know anything now.

<span class="FTHighlightFont">She is thinking like it was 30 years ago & all she says is "you beat the odds". Well yes as far as life expectancy, but not the CF itself which is what she likes to think.</span ft>

Its frustrating. I dont bother because it makes her too emotional & I cant handle it. My sisters & SIL are great about wanting the updates etc. So someone in my family knows.

HUGS'</end quote></div>

That sounds like my mom..to the "t". There has been a lot of change since then, and I know there is a lot to learn. I am always concerned about what to do when the my disease advances to the point I am no longer to fully care for myself. My parents are essentially clueless at this point. My girlfriend is so scared of the disease she is both afraid to learn about it and gets frustrated when I try explaining the details of it. The only one in my family that seems to care a whole lot to go out of the way is my youngest sister, who is a year older than I. In the last 7 years, her, and one of my close friends, is the only person who has ever gone to the hospital with me for a clinic checkup. She asks a lot of questions and tries to learn some. Of course, not being exposed to the details until the last number of years, she has a hard time comprehending it too. I do have to put all my faith into her though because she is the only one to go out of her way for me. In fact, she has went out of the way enough that she is my beneficiary for my life insurance and belongings. I know I can trust her.

bagged2drag · Dec 26, 2007

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

My Mom knew what she needed to know at the time. She doesnt know anything now.

<span class="FTHighlightFont">She is thinking like it was 30 years ago & all she says is "you beat the odds". Well yes as far as life expectancy, but not the CF itself which is what she likes to think.</span ft>

Its frustrating. I dont bother because it makes her too emotional & I cant handle it. My sisters & SIL are great about wanting the updates etc. So someone in my family knows.

HUGS'</end quote>

That sounds like my mom..to the "t". There has been a lot of change since then, and I know there is a lot to learn. I am always concerned about what to do when the my disease advances to the point I am no longer to fully care for myself. My parents are essentially clueless at this point. My girlfriend is so scared of the disease she is both afraid to learn about it and gets frustrated when I try explaining the details of it. The only one in my family that seems to care a whole lot to go out of the way is my youngest sister, who is a year older than I. In the last 7 years, her, and one of my close friends, is the only person who has ever gone to the hospital with me for a clinic checkup. She asks a lot of questions and tries to learn some. Of course, not being exposed to the details until the last number of years, she has a hard time comprehending it too. I do have to put all my faith into her though because she is the only one to go out of her way for me. In fact, she has went out of the way enough that she is my beneficiary for my life insurance and belongings. I know I can trust her.

bagged2drag · Dec 26, 2007

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

My Mom knew what she needed to know at the time. She doesnt know anything now.

<span class="FTHighlightFont">She is thinking like it was 30 years ago & all she says is "you beat the odds". Well yes as far as life expectancy, but not the CF itself which is what she likes to think.</span ft>

Its frustrating. I dont bother because it makes her too emotional & I cant handle it. My sisters & SIL are great about wanting the updates etc. So someone in my family knows.

HUGS'</end quote>

That sounds like my mom..to the "t". There has been a lot of change since then, and I know there is a lot to learn. I am always concerned about what to do when the my disease advances to the point I am no longer to fully care for myself. My parents are essentially clueless at this point. My girlfriend is so scared of the disease she is both afraid to learn about it and gets frustrated when I try explaining the details of it. The only one in my family that seems to care a whole lot to go out of the way is my youngest sister, who is a year older than I. In the last 7 years, her, and one of my close friends, is the only person who has ever gone to the hospital with me for a clinic checkup. She asks a lot of questions and tries to learn some. Of course, not being exposed to the details until the last number of years, she has a hard time comprehending it too. I do have to put all my faith into her though because she is the only one to go out of her way for me. In fact, she has went out of the way enough that she is my beneficiary for my life insurance and belongings. I know I can trust her.

Question about telling your parents all about CF

blindhearted

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blindhearted

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blindhearted

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blindhearted

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blindhearted

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JennifersHope

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JennifersHope

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JennifersHope

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JennifersHope

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bagged2drag

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bagged2drag

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bagged2drag

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bagged2drag

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