Post-Appointment Thoughts

[Jane]

The loneliness my kids feel is one thing that makes me sad about their disease. They do have each other, but its not the same as relating to person outside the family. They have never talked to another person about their medicines, their g-tubes or their various therapies. That is a huge burden to carry around!

My boys grow mostly the same bugs so we have not tried to keep them separate (although we are cautious). I can't bear to think about a time that they have to keep apart. It will break their hearts and their spirit.

Blake, you have described it so well.

 

[DarceyMaysey]

My twin brother and I both have CF...we weren't diagnosed until we were 30 so needless to say we did not follow the recommended "safety precautions." I can't really imagine having to do it but I guess if it keeps Darby from getting sick (or me) it would be worth it.

 

[DarceyMaysey]

My twin brother and I both have CF...we weren't diagnosed until we were 30 so needless to say we did not follow the recommended "safety precautions." I can't really imagine having to do it but I guess if it keeps Darby from getting sick (or me) it would be worth it.

 

[DarceyMaysey]

My twin brother and I both have CF...we weren't diagnosed until we were 30 so needless to say we did not follow the recommended "safety precautions." I can't really imagine having to do it but I guess if it keeps Darby from getting sick (or me) it would be worth it.

 

[summer732]

I couldn't agree more! I was actually thinking the same thing last night. My sister, no cf, has a cold right now. With me being post transplant, I have learned the hard way that every little cold virus can cause damage to sensitive lungs like mine. So there we were last night, avoiding each other, couldn't watch tv together, disinfecting EVERYTHING, and my sister basically locked up in her room. It sucks having to be so vigilant sometimes!

 

[summer732]

I couldn't agree more! I was actually thinking the same thing last night. My sister, no cf, has a cold right now. With me being post transplant, I have learned the hard way that every little cold virus can cause damage to sensitive lungs like mine. So there we were last night, avoiding each other, couldn't watch tv together, disinfecting EVERYTHING, and my sister basically locked up in her room. It sucks having to be so vigilant sometimes!

 

[summer732]

I couldn't agree more! I was actually thinking the same thing last night. My sister, no cf, has a cold right now. With me being post transplant, I have learned the hard way that every little cold virus can cause damage to sensitive lungs like mine. So there we were last night, avoiding each other, couldn't watch tv together, disinfecting EVERYTHING, and my sister basically locked up in her room. It sucks having to be so vigilant sometimes!

 

[MCGrad2006]

I know exactly what you mean Blake. I dont have a family member or anything with CF, but I went to a college where two other girls with CF actually ended up going with me. I began to get close to one of the girls, Kathleen, in our Senior year and she was very sick. I regret not talking to her before that, but it was a dangerous situation for both of us. We were never really NEAR each other, we saw each other in the halls and talked on IM and I will never forget the conversations I had with her. Her mom called my house the summer before our Junior Year and broke the news that Kay had cepacia and it hurt so bad. <img src="i/expressions/brokenheart.gif" border="0"> I didnt really know what that meant at the time, I just knew it was bad news. It was so hard for me to see her and not be able to just hug her. I wanted to sit down and have lunch with her, compare stories, PICC scars and everything else that goes with CF. It sucked royally and I find that is one of the hardest things I have had to mentally deal with. Sometimes you just want to talk to others and be near others with the same issues.

Thats why I think that this site is so wonderful. I joined in November and I have been able to talk to many others who have had to endure so much, like me. It helps to bring us together in a community where we can voice our own opinions and sympathize with others and feel normal. No its not the same as a 'CF Camp' like there used to be, but at least its something and thats what we are here for. We are here to listen and compare, we are here for you Blake! Anytime you need to chat, please PM me. I would love to get to know you better! Have a good weekend! <img src="i/expressions/heart.gif" border="0"> <img src="i/expressions/rose.gif" border="0">

 

[MCGrad2006]

I know exactly what you mean Blake. I dont have a family member or anything with CF, but I went to a college where two other girls with CF actually ended up going with me. I began to get close to one of the girls, Kathleen, in our Senior year and she was very sick. I regret not talking to her before that, but it was a dangerous situation for both of us. We were never really NEAR each other, we saw each other in the halls and talked on IM and I will never forget the conversations I had with her. Her mom called my house the summer before our Junior Year and broke the news that Kay had cepacia and it hurt so bad. <img src="i/expressions/brokenheart.gif" border="0"> I didnt really know what that meant at the time, I just knew it was bad news. It was so hard for me to see her and not be able to just hug her. I wanted to sit down and have lunch with her, compare stories, PICC scars and everything else that goes with CF. It sucked royally and I find that is one of the hardest things I have had to mentally deal with. Sometimes you just want to talk to others and be near others with the same issues.

Thats why I think that this site is so wonderful. I joined in November and I have been able to talk to many others who have had to endure so much, like me. It helps to bring us together in a community where we can voice our own opinions and sympathize with others and feel normal. No its not the same as a 'CF Camp' like there used to be, but at least its something and thats what we are here for. We are here to listen and compare, we are here for you Blake! Anytime you need to chat, please PM me. I would love to get to know you better! Have a good weekend! <img src="i/expressions/heart.gif" border="0"> <img src="i/expressions/rose.gif" border="0">

 

[MCGrad2006]

I know exactly what you mean Blake. I dont have a family member or anything with CF, but I went to a college where two other girls with CF actually ended up going with me. I began to get close to one of the girls, Kathleen, in our Senior year and she was very sick. I regret not talking to her before that, but it was a dangerous situation for both of us. We were never really NEAR each other, we saw each other in the halls and talked on IM and I will never forget the conversations I had with her. Her mom called my house the summer before our Junior Year and broke the news that Kay had cepacia and it hurt so bad. <img src="i/expressions/brokenheart.gif" border="0"> I didnt really know what that meant at the time, I just knew it was bad news. It was so hard for me to see her and not be able to just hug her. I wanted to sit down and have lunch with her, compare stories, PICC scars and everything else that goes with CF. It sucked royally and I find that is one of the hardest things I have had to mentally deal with. Sometimes you just want to talk to others and be near others with the same issues.

Thats why I think that this site is so wonderful. I joined in November and I have been able to talk to many others who have had to endure so much, like me. It helps to bring us together in a community where we can voice our own opinions and sympathize with others and feel normal. No its not the same as a 'CF Camp' like there used to be, but at least its something and thats what we are here for. We are here to listen and compare, we are here for you Blake! Anytime you need to chat, please PM me. I would love to get to know you better! Have a good weekend! <img src="i/expressions/heart.gif" border="0"> <img src="i/expressions/rose.gif" border="0">

 

[Jan]

Dear Blake... It stinks that you can't give your best friend in the whole world the hug you want to. MY daughter has CF and I have bronchiectasis. I have just recently got psuedomonas which they say I acquired from my daughter cos it shows I am resistant to most a/b's already! I used to assist families with little ones with CF who wouldn't take enzymes or whatever so now I can't do that. My daughter is 21 and I have met lots of people with CF over those years and I am now paranoid about bumping into anyone now as I don't want to risk picking up anything ( cepacia in particular) that I could possibly pass onto her.
Take Care
Nene

 

[Jan]

Dear Blake... It stinks that you can't give your best friend in the whole world the hug you want to. MY daughter has CF and I have bronchiectasis. I have just recently got psuedomonas which they say I acquired from my daughter cos it shows I am resistant to most a/b's already! I used to assist families with little ones with CF who wouldn't take enzymes or whatever so now I can't do that. My daughter is 21 and I have met lots of people with CF over those years and I am now paranoid about bumping into anyone now as I don't want to risk picking up anything ( cepacia in particular) that I could possibly pass onto her.
Take Care
Nene

 

[Jan]

Dear Blake... It stinks that you can't give your best friend in the whole world the hug you want to. MY daughter has CF and I have bronchiectasis. I have just recently got psuedomonas which they say I acquired from my daughter cos it shows I am resistant to most a/b's already! I used to assist families with little ones with CF who wouldn't take enzymes or whatever so now I can't do that. My daughter is 21 and I have met lots of people with CF over those years and I am now paranoid about bumping into anyone now as I don't want to risk picking up anything ( cepacia in particular) that I could possibly pass onto her.
Take Care
Nene

 

[littletally]

I would like to put my two cents in on this topic also. I just finished three weeks of antibiotics so I'm feeling great now but then not so much. At the U of Minnesota Fairview you are in isolation when you are in the hospital. Not really that bad everyone just dresses up when they come in and you can still leave the room just wash your hands really well. Any who I was talking to a RT person that has been there forever and we were talking about how morbid it is being in the hospital because we don't and "can't" talk to each other. Now I know usually when we are in the hospital we don't feel good but that is the time I would like to talk to people! It lets me know I'm not alone. But we don't talk and don't even say hi to one another. There has to be some way to get to know people in person. Not that this website isn't good but I like to see a person's face when they are talking. You can tell alot more when you see thier faces. I used to go to that camp for cf kids and it was a blast then! Can't do that today though. Any who I just wanted to say that it would be great if we could invent something to wear and be able to talk to people in person. I bet we could all (even non-cfer's) benefit from an invention like that!

Nikki
27/f/cf

 

[littletally]

I would like to put my two cents in on this topic also. I just finished three weeks of antibiotics so I'm feeling great now but then not so much. At the U of Minnesota Fairview you are in isolation when you are in the hospital. Not really that bad everyone just dresses up when they come in and you can still leave the room just wash your hands really well. Any who I was talking to a RT person that has been there forever and we were talking about how morbid it is being in the hospital because we don't and "can't" talk to each other. Now I know usually when we are in the hospital we don't feel good but that is the time I would like to talk to people! It lets me know I'm not alone. But we don't talk and don't even say hi to one another. There has to be some way to get to know people in person. Not that this website isn't good but I like to see a person's face when they are talking. You can tell alot more when you see thier faces. I used to go to that camp for cf kids and it was a blast then! Can't do that today though. Any who I just wanted to say that it would be great if we could invent something to wear and be able to talk to people in person. I bet we could all (even non-cfer's) benefit from an invention like that!

Nikki
27/f/cf

 

[littletally]

I would like to put my two cents in on this topic also. I just finished three weeks of antibiotics so I'm feeling great now but then not so much. At the U of Minnesota Fairview you are in isolation when you are in the hospital. Not really that bad everyone just dresses up when they come in and you can still leave the room just wash your hands really well. Any who I was talking to a RT person that has been there forever and we were talking about how morbid it is being in the hospital because we don't and "can't" talk to each other. Now I know usually when we are in the hospital we don't feel good but that is the time I would like to talk to people! It lets me know I'm not alone. But we don't talk and don't even say hi to one another. There has to be some way to get to know people in person. Not that this website isn't good but I like to see a person's face when they are talking. You can tell alot more when you see thier faces. I used to go to that camp for cf kids and it was a blast then! Can't do that today though. Any who I just wanted to say that it would be great if we could invent something to wear and be able to talk to people in person. I bet we could all (even non-cfer's) benefit from an invention like that!

Nikki
27/f/cf