just found out my boyfriend has CF - please help

marmarmar

New member
thank you so much. that was an AMAZING message. i already sort of wanted to shoot my best friend in the head two hours ago after she whined about her fiance's choices for baby names as if it were the end of the world. did i mention they're not even planning for children yet? of course, she also doesn't know yet, and it isn't her fault. everyone gets their own reality, right? one person may feel silly telling another person about their breakup when the other person's spouse has died tragically. but that doesn't mean that the other person isn't feeling equally devastated - we all have our own devastation, reality, life, and sad story.

i think i am taking this especially horribly because i am currently recovering from pretty severe panic disorder stemming from a fear of death. the thing that terrifies me most is that i'm not particularly religious or convinced of an afterlife, and i desperately want to be. i almost think that maybe this is some sort of perfectly poetic thing - that this man who i've imagined marrying (and i'm not even THAT type) has brought me a daily reminder of my biggest fear. and yeah. it is selfish. but again - it's my reality.

i want a cure. and in my head, i am wondering why everyone isn't trying harder. but i know that isn't true. people are desperate for a cure. everybody wants what i want, and i'm not even sick. i try to convince myself that i will be able to somehow help in finding one, but i also realize that most people probably feel that way. powerless. blah blah. all of the obvious dictionary words.

currently, i have a pretty bad lung infection, and i started smoking again three hours ago. i have been smoking by myself all night, because some sick part of me wants to feel how he does. also, i am still in a bit of shock. and i want to comfort him, but i won't be near him because i am contagious. he wants so desperately to act normal, but i can't make him sick. i have to be responsible.

to answer your last question - he doesn't have acne or oily skin. he has been amazingly lucky in every sense. was diagnosed with FTT and ended up growing into a 6'4 dark-irishman. he looks like the strongest, most healthy person alive.
 

marmarmar

New member
thank you so much. that was an AMAZING message. i already sort of wanted to shoot my best friend in the head two hours ago after she whined about her fiance's choices for baby names as if it were the end of the world. did i mention they're not even planning for children yet? of course, she also doesn't know yet, and it isn't her fault. everyone gets their own reality, right? one person may feel silly telling another person about their breakup when the other person's spouse has died tragically. but that doesn't mean that the other person isn't feeling equally devastated - we all have our own devastation, reality, life, and sad story.

i think i am taking this especially horribly because i am currently recovering from pretty severe panic disorder stemming from a fear of death. the thing that terrifies me most is that i'm not particularly religious or convinced of an afterlife, and i desperately want to be. i almost think that maybe this is some sort of perfectly poetic thing - that this man who i've imagined marrying (and i'm not even THAT type) has brought me a daily reminder of my biggest fear. and yeah. it is selfish. but again - it's my reality.

i want a cure. and in my head, i am wondering why everyone isn't trying harder. but i know that isn't true. people are desperate for a cure. everybody wants what i want, and i'm not even sick. i try to convince myself that i will be able to somehow help in finding one, but i also realize that most people probably feel that way. powerless. blah blah. all of the obvious dictionary words.

currently, i have a pretty bad lung infection, and i started smoking again three hours ago. i have been smoking by myself all night, because some sick part of me wants to feel how he does. also, i am still in a bit of shock. and i want to comfort him, but i won't be near him because i am contagious. he wants so desperately to act normal, but i can't make him sick. i have to be responsible.

to answer your last question - he doesn't have acne or oily skin. he has been amazingly lucky in every sense. was diagnosed with FTT and ended up growing into a 6'4 dark-irishman. he looks like the strongest, most healthy person alive.
 

marmarmar

New member
thank you so much. that was an AMAZING message. i already sort of wanted to shoot my best friend in the head two hours ago after she whined about her fiance's choices for baby names as if it were the end of the world. did i mention they're not even planning for children yet? of course, she also doesn't know yet, and it isn't her fault. everyone gets their own reality, right? one person may feel silly telling another person about their breakup when the other person's spouse has died tragically. but that doesn't mean that the other person isn't feeling equally devastated - we all have our own devastation, reality, life, and sad story.

i think i am taking this especially horribly because i am currently recovering from pretty severe panic disorder stemming from a fear of death. the thing that terrifies me most is that i'm not particularly religious or convinced of an afterlife, and i desperately want to be. i almost think that maybe this is some sort of perfectly poetic thing - that this man who i've imagined marrying (and i'm not even THAT type) has brought me a daily reminder of my biggest fear. and yeah. it is selfish. but again - it's my reality.

i want a cure. and in my head, i am wondering why everyone isn't trying harder. but i know that isn't true. people are desperate for a cure. everybody wants what i want, and i'm not even sick. i try to convince myself that i will be able to somehow help in finding one, but i also realize that most people probably feel that way. powerless. blah blah. all of the obvious dictionary words.

currently, i have a pretty bad lung infection, and i started smoking again three hours ago. i have been smoking by myself all night, because some sick part of me wants to feel how he does. also, i am still in a bit of shock. and i want to comfort him, but i won't be near him because i am contagious. he wants so desperately to act normal, but i can't make him sick. i have to be responsible.

to answer your last question - he doesn't have acne or oily skin. he has been amazingly lucky in every sense. was diagnosed with FTT and ended up growing into a 6'4 dark-irishman. he looks like the strongest, most healthy person alive.
 

marmarmar

New member
thank you so much. that was an AMAZING message. i already sort of wanted to shoot my best friend in the head two hours ago after she whined about her fiance's choices for baby names as if it were the end of the world. did i mention they're not even planning for children yet? of course, she also doesn't know yet, and it isn't her fault. everyone gets their own reality, right? one person may feel silly telling another person about their breakup when the other person's spouse has died tragically. but that doesn't mean that the other person isn't feeling equally devastated - we all have our own devastation, reality, life, and sad story.

i think i am taking this especially horribly because i am currently recovering from pretty severe panic disorder stemming from a fear of death. the thing that terrifies me most is that i'm not particularly religious or convinced of an afterlife, and i desperately want to be. i almost think that maybe this is some sort of perfectly poetic thing - that this man who i've imagined marrying (and i'm not even THAT type) has brought me a daily reminder of my biggest fear. and yeah. it is selfish. but again - it's my reality.

i want a cure. and in my head, i am wondering why everyone isn't trying harder. but i know that isn't true. people are desperate for a cure. everybody wants what i want, and i'm not even sick. i try to convince myself that i will be able to somehow help in finding one, but i also realize that most people probably feel that way. powerless. blah blah. all of the obvious dictionary words.

currently, i have a pretty bad lung infection, and i started smoking again three hours ago. i have been smoking by myself all night, because some sick part of me wants to feel how he does. also, i am still in a bit of shock. and i want to comfort him, but i won't be near him because i am contagious. he wants so desperately to act normal, but i can't make him sick. i have to be responsible.

to answer your last question - he doesn't have acne or oily skin. he has been amazingly lucky in every sense. was diagnosed with FTT and ended up growing into a 6'4 dark-irishman. he looks like the strongest, most healthy person alive.
 

marmarmar

New member
thank you so much. that was an AMAZING message. i already sort of wanted to shoot my best friend in the head two hours ago after she whined about her fiance's choices for baby names as if it were the end of the world. did i mention they're not even planning for children yet? of course, she also doesn't know yet, and it isn't her fault. everyone gets their own reality, right? one person may feel silly telling another person about their breakup when the other person's spouse has died tragically. but that doesn't mean that the other person isn't feeling equally devastated - we all have our own devastation, reality, life, and sad story.
<br />
<br />i think i am taking this especially horribly because i am currently recovering from pretty severe panic disorder stemming from a fear of death. the thing that terrifies me most is that i'm not particularly religious or convinced of an afterlife, and i desperately want to be. i almost think that maybe this is some sort of perfectly poetic thing - that this man who i've imagined marrying (and i'm not even THAT type) has brought me a daily reminder of my biggest fear. and yeah. it is selfish. but again - it's my reality.
<br />
<br />i want a cure. and in my head, i am wondering why everyone isn't trying harder. but i know that isn't true. people are desperate for a cure. everybody wants what i want, and i'm not even sick. i try to convince myself that i will be able to somehow help in finding one, but i also realize that most people probably feel that way. powerless. blah blah. all of the obvious dictionary words.
<br />
<br />currently, i have a pretty bad lung infection, and i started smoking again three hours ago. i have been smoking by myself all night, because some sick part of me wants to feel how he does. also, i am still in a bit of shock. and i want to comfort him, but i won't be near him because i am contagious. he wants so desperately to act normal, but i can't make him sick. i have to be responsible.
<br />
<br />to answer your last question - he doesn't have acne or oily skin. he has been amazingly lucky in every sense. was diagnosed with FTT and ended up growing into a 6'4 dark-irishman. he looks like the strongest, most healthy person alive.
 

marmarmar

New member
oh. sorry! that wasn't your question!
kmhbeauty - no, to the last question. but thank you from the bottom of my heart for replying.
your response sounds a lot like something he would say. he is convinced that they will have a cure or better treatement by the time he gets sick.

hopefully, with obama having approved gene therapy research, things will change! just need to get some money for funding!
 

marmarmar

New member
oh. sorry! that wasn't your question!
kmhbeauty - no, to the last question. but thank you from the bottom of my heart for replying.
your response sounds a lot like something he would say. he is convinced that they will have a cure or better treatement by the time he gets sick.

hopefully, with obama having approved gene therapy research, things will change! just need to get some money for funding!
 

marmarmar

New member
oh. sorry! that wasn't your question!
kmhbeauty - no, to the last question. but thank you from the bottom of my heart for replying.
your response sounds a lot like something he would say. he is convinced that they will have a cure or better treatement by the time he gets sick.

hopefully, with obama having approved gene therapy research, things will change! just need to get some money for funding!
 

marmarmar

New member
oh. sorry! that wasn't your question!
kmhbeauty - no, to the last question. but thank you from the bottom of my heart for replying.
your response sounds a lot like something he would say. he is convinced that they will have a cure or better treatement by the time he gets sick.

hopefully, with obama having approved gene therapy research, things will change! just need to get some money for funding!
 

marmarmar

New member
oh. sorry! that wasn't your question!
<br />kmhbeauty - no, to the last question. but thank you from the bottom of my heart for replying.
<br />your response sounds a lot like something he would say. he is convinced that they will have a cure or better treatement by the time he gets sick.
<br />
<br />hopefully, with obama having approved gene therapy research, things will change! just need to get some money for funding!
<br />
 

Transplantmommy

New member
Hey there marmarmar! You are a great person for sticking by him even after he told you about the CF. I have been with my husband for almost 11 years, married for 6 1/2. My situation was a littler different....he knew right from the beginning what he was getting into. When we started dating he already knew that I have CF. He did have to learn about it and his parents were concerned with him dating me, knowing what could happen. I was fairly healthy when I started dating him (the end of my Junior year of High school) and we got the news of needing the double lung and liver transplant only after 2 years of being married (I was 23).

In the midst of all of this (being evaluated for the transplants) I found out that I was pregnant, which we never thought was going to happen. I was told to terminate the pregnancy and I wouldn't do it. Our son was born in January 2006 and he was perfectly healthy (although 7 weeks premature). I had my double lung and liver transplant in January 2007 and have been well since with only a few bumps in the road. I am now 27 years old and don't plan on letting go anytime soon.

If your bf takes care of himself as you say he does, he should be a while off from transplant or anything like that. I had MANY hospitalizations by the time I was 18 and it sucked. CF is different with so many people....some CFers die when they are kids and I know some who are in their 40's, 50's, and even one in their 60's. I am hoping to at least make it until I see my son get married....that would make me the happiest person in the world!
 

Transplantmommy

New member
Hey there marmarmar! You are a great person for sticking by him even after he told you about the CF. I have been with my husband for almost 11 years, married for 6 1/2. My situation was a littler different....he knew right from the beginning what he was getting into. When we started dating he already knew that I have CF. He did have to learn about it and his parents were concerned with him dating me, knowing what could happen. I was fairly healthy when I started dating him (the end of my Junior year of High school) and we got the news of needing the double lung and liver transplant only after 2 years of being married (I was 23).

In the midst of all of this (being evaluated for the transplants) I found out that I was pregnant, which we never thought was going to happen. I was told to terminate the pregnancy and I wouldn't do it. Our son was born in January 2006 and he was perfectly healthy (although 7 weeks premature). I had my double lung and liver transplant in January 2007 and have been well since with only a few bumps in the road. I am now 27 years old and don't plan on letting go anytime soon.

If your bf takes care of himself as you say he does, he should be a while off from transplant or anything like that. I had MANY hospitalizations by the time I was 18 and it sucked. CF is different with so many people....some CFers die when they are kids and I know some who are in their 40's, 50's, and even one in their 60's. I am hoping to at least make it until I see my son get married....that would make me the happiest person in the world!
 

Transplantmommy

New member
Hey there marmarmar! You are a great person for sticking by him even after he told you about the CF. I have been with my husband for almost 11 years, married for 6 1/2. My situation was a littler different....he knew right from the beginning what he was getting into. When we started dating he already knew that I have CF. He did have to learn about it and his parents were concerned with him dating me, knowing what could happen. I was fairly healthy when I started dating him (the end of my Junior year of High school) and we got the news of needing the double lung and liver transplant only after 2 years of being married (I was 23).

In the midst of all of this (being evaluated for the transplants) I found out that I was pregnant, which we never thought was going to happen. I was told to terminate the pregnancy and I wouldn't do it. Our son was born in January 2006 and he was perfectly healthy (although 7 weeks premature). I had my double lung and liver transplant in January 2007 and have been well since with only a few bumps in the road. I am now 27 years old and don't plan on letting go anytime soon.

If your bf takes care of himself as you say he does, he should be a while off from transplant or anything like that. I had MANY hospitalizations by the time I was 18 and it sucked. CF is different with so many people....some CFers die when they are kids and I know some who are in their 40's, 50's, and even one in their 60's. I am hoping to at least make it until I see my son get married....that would make me the happiest person in the world!
 

Transplantmommy

New member
Hey there marmarmar! You are a great person for sticking by him even after he told you about the CF. I have been with my husband for almost 11 years, married for 6 1/2. My situation was a littler different....he knew right from the beginning what he was getting into. When we started dating he already knew that I have CF. He did have to learn about it and his parents were concerned with him dating me, knowing what could happen. I was fairly healthy when I started dating him (the end of my Junior year of High school) and we got the news of needing the double lung and liver transplant only after 2 years of being married (I was 23).

In the midst of all of this (being evaluated for the transplants) I found out that I was pregnant, which we never thought was going to happen. I was told to terminate the pregnancy and I wouldn't do it. Our son was born in January 2006 and he was perfectly healthy (although 7 weeks premature). I had my double lung and liver transplant in January 2007 and have been well since with only a few bumps in the road. I am now 27 years old and don't plan on letting go anytime soon.

If your bf takes care of himself as you say he does, he should be a while off from transplant or anything like that. I had MANY hospitalizations by the time I was 18 and it sucked. CF is different with so many people....some CFers die when they are kids and I know some who are in their 40's, 50's, and even one in their 60's. I am hoping to at least make it until I see my son get married....that would make me the happiest person in the world!
 

Transplantmommy

New member
Hey there marmarmar! You are a great person for sticking by him even after he told you about the CF. I have been with my husband for almost 11 years, married for 6 1/2. My situation was a littler different....he knew right from the beginning what he was getting into. When we started dating he already knew that I have CF. He did have to learn about it and his parents were concerned with him dating me, knowing what could happen. I was fairly healthy when I started dating him (the end of my Junior year of High school) and we got the news of needing the double lung and liver transplant only after 2 years of being married (I was 23).
<br />
<br />In the midst of all of this (being evaluated for the transplants) I found out that I was pregnant, which we never thought was going to happen. I was told to terminate the pregnancy and I wouldn't do it. Our son was born in January 2006 and he was perfectly healthy (although 7 weeks premature). I had my double lung and liver transplant in January 2007 and have been well since with only a few bumps in the road. I am now 27 years old and don't plan on letting go anytime soon.
<br />
<br />If your bf takes care of himself as you say he does, he should be a while off from transplant or anything like that. I had MANY hospitalizations by the time I was 18 and it sucked. CF is different with so many people....some CFers die when they are kids and I know some who are in their 40's, 50's, and even one in their 60's. I am hoping to at least make it until I see my son get married....that would make me the happiest person in the world!
 
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