Cepacia has ruined my relationship with my sister

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theonlypirate

New member
Thanks for your reply!
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<br />I have not considered getting my social worker involved. I've thought that maybe we need therapy - I wonder if my family would ever agree to it. I know my sister is seeing someone and my parents have wanted me to see the same person to patch up our relationship. I think you're right that it would have to be something the whole family is involved in so we all are on the same page. Maybe when things cool down from the last argument, I'll suggest it.
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<br />I have not, but I have heard about that! I thought it was a movie and was never able to figure out what show or movie it was that had that plot. I even told my parents about it and they shrugged it off as over-the-top (which it is, but it isn't). I'll have to watch it and tell you what I think about it. I might be able to say that it's not so absurd. My family had a huge fight/split when I had to find somewhere else to live. I'm sick enough that I can't live on my own so they told me to just stay with them. When I didn't, it was super blown out of proportion (if you ask me and we're being totally honest). I wish I could say that it's a totally absurd plot.
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<br />I'll try to find it online and tell you what I think. Thanks again for your input.
 
A

Allisa35

Member
My situation is somewhat similar to yours. Both my sister and I have CF. I'm not sure of your age, but I am 39 and my sister is 42. Several years ago she was told that she had B. Cepacia (from a sputum culture). We didn't live with each other at the time of her diagnosis either which differs from your situation. We were both upset about it and weren't sure how we would do things. We are close and visit each other often, once every week or two. We have never had a strained relationship so that differs from your situation also.

Initially we wore masks when we were around each other and just stayed clear of each other while coughing and what not. Wearing the masks got old real quick and I just didn't worry about it anymore.

It was later determined that she actually had B. Gladioli and not Cepacia. I don't know much about Gladioli and/or if it is worse or better than cepacia, but she still cultures it. But, regardless, I'm not going to let that interfere with my relationship with her.

I don't know if anything I've said has helped you or not. Every person is different. For me, I just won't let something like that stop me from having a relationship with her. I can't speak for her, but I would think she would feel the same. It definitely doesn't hurt anything to take precautions though. It's a tough call. I would think your parens would understand, but I can also understand hurt feelings. Good luck to you!!
 
A

Allisa35

Member
My situation is somewhat similar to yours. Both my sister and I have CF. I'm not sure of your age, but I am 39 and my sister is 42. Several years ago she was told that she had B. Cepacia (from a sputum culture). We didn't live with each other at the time of her diagnosis either which differs from your situation. We were both upset about it and weren't sure how we would do things. We are close and visit each other often, once every week or two. We have never had a strained relationship so that differs from your situation also.

Initially we wore masks when we were around each other and just stayed clear of each other while coughing and what not. Wearing the masks got old real quick and I just didn't worry about it anymore.

It was later determined that she actually had B. Gladioli and not Cepacia. I don't know much about Gladioli and/or if it is worse or better than cepacia, but she still cultures it. But, regardless, I'm not going to let that interfere with my relationship with her.

I don't know if anything I've said has helped you or not. Every person is different. For me, I just won't let something like that stop me from having a relationship with her. I can't speak for her, but I would think she would feel the same. It definitely doesn't hurt anything to take precautions though. It's a tough call. I would think your parens would understand, but I can also understand hurt feelings. Good luck to you!!
 
A

Allisa35

Member
My situation is somewhat similar to yours. Both my sister and I have CF. I'm not sure of your age, but I am 39 and my sister is 42. Several years ago she was told that she had B. Cepacia (from a sputum culture). We didn't live with each other at the time of her diagnosis either which differs from your situation. We were both upset about it and weren't sure how we would do things. We are close and visit each other often, once every week or two. We have never had a strained relationship so that differs from your situation also.
<br />
<br />Initially we wore masks when we were around each other and just stayed clear of each other while coughing and what not. Wearing the masks got old real quick and I just didn't worry about it anymore.
<br />
<br />It was later determined that she actually had B. Gladioli and not Cepacia. I don't know much about Gladioli and/or if it is worse or better than cepacia, but she still cultures it. But, regardless, I'm not going to let that interfere with my relationship with her.
<br />
<br />I don't know if anything I've said has helped you or not. Every person is different. For me, I just won't let something like that stop me from having a relationship with her. I can't speak for her, but I would think she would feel the same. It definitely doesn't hurt anything to take precautions though. It's a tough call. I would think your parens would understand, but I can also understand hurt feelings. Good luck to you!!
 
S

sdelorenzo

Guest
My two kids have cf as well as my nephew. It has caused lots of stress in my husband's family and it has hurt my relationship with my sister-in-law. Family gatherings do not happen as my husband's parents would like. My kids see their cousin about once or twice a year even though we live in the same city.
It is an unfortunate situation. Sharon, mom of Sophia, 9 and Jack, 6 both with cf, Grant, 18 months no cf, aunt to Joseph, 12 with cf
 
S

sdelorenzo

Guest
My two kids have cf as well as my nephew. It has caused lots of stress in my husband's family and it has hurt my relationship with my sister-in-law. Family gatherings do not happen as my husband's parents would like. My kids see their cousin about once or twice a year even though we live in the same city.
It is an unfortunate situation. Sharon, mom of Sophia, 9 and Jack, 6 both with cf, Grant, 18 months no cf, aunt to Joseph, 12 with cf
 
S

sdelorenzo

Guest
My two kids have cf as well as my nephew. It has caused lots of stress in my husband's family and it has hurt my relationship with my sister-in-law. Family gatherings do not happen as my husband's parents would like. My kids see their cousin about once or twice a year even though we live in the same city.
<br />It is an unfortunate situation. Sharon, mom of Sophia, 9 and Jack, 6 both with cf, Grant, 18 months no cf, aunt to Joseph, 12 with cf
 
T

theLostMiler

New member
It is posts like this, that make me hate dealing with CF even more....

sorry everyone who has similiar situations to OP has to go through any situations like this...
I have b. cep and I cant imagine having a sibling with it... but as far as other cf'ers... I <i>try </i>to not do anything where there might be one. Obviously the walks, but I dont send anyone postcards or letters or t-shirts etc. I would like to think I would understand a siblings point of view... and understand its hard on both the person w/ b. cep and the one w/o b. cep.
 
T

theLostMiler

New member
It is posts like this, that make me hate dealing with CF even more....

sorry everyone who has similiar situations to OP has to go through any situations like this...
I have b. cep and I cant imagine having a sibling with it... but as far as other cf'ers... I <i>try </i>to not do anything where there might be one. Obviously the walks, but I dont send anyone postcards or letters or t-shirts etc. I would like to think I would understand a siblings point of view... and understand its hard on both the person w/ b. cep and the one w/o b. cep.
 
T

theLostMiler

New member
It is posts like this, that make me hate dealing with CF even more....
<br />
<br />sorry everyone who has similiar situations to OP has to go through any situations like this...
<br />I have b. cep and I cant imagine having a sibling with it... but as far as other cf'ers... I <i>try </i>to not do anything where there might be one. Obviously the walks, but I dont send anyone postcards or letters or t-shirts etc. I would like to think I would understand a siblings point of view... and understand its hard on both the person w/ b. cep and the one w/o b. cep.
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<br />
 
T

theonlypirate

New member
Allisa35 - Thank you very much for your point of view.

It helps to hear something from someone who actually at least thought they were in my situation. There are little differences, but it just isn't the same unless it's someone in your immediate family who is affected and you are not.

Do you know how contagious Gladioli is? I've honestly never heard of it. I'll have to go on pubmed and research it.

I think the main problem is that my entire life would change if I got cepacia. Her life has been determined because of it which really sucks. But I already have gone to conferences and have established teams with Great Strides. I'm in my second year of my relationship with my boyfriend. We've withstood his brother's death, his double lung and liver transplant, and so much more. If I got cepacia, I would lose all of those things.

It sucks for her, too, because she never had the opportunity to work in a hospital (because it's dangerous for other immunocompromised people as well). She has a cancer friend who has to wear a mask around her. She is isolated on a different floor and doesn't get to interact with other CF-ers, except my friends. I recognize that her CF experience is going to be far different from mine. I understand that she also feels like I've chosen all of those things over her. I guess I have <img src="i/expressions/face-icon-small-sad.gif" border="0">

It's a very difficult situation, but thank you so much for letting me know how you dealt with it when you thought you were in that position and how you deal with it now. It's nice to see that there are sisters who love each other so much that they don't let this sort of thing ruin their relationship.
 
T

theonlypirate

New member
Allisa35 - Thank you very much for your point of view.

It helps to hear something from someone who actually at least thought they were in my situation. There are little differences, but it just isn't the same unless it's someone in your immediate family who is affected and you are not.

Do you know how contagious Gladioli is? I've honestly never heard of it. I'll have to go on pubmed and research it.

I think the main problem is that my entire life would change if I got cepacia. Her life has been determined because of it which really sucks. But I already have gone to conferences and have established teams with Great Strides. I'm in my second year of my relationship with my boyfriend. We've withstood his brother's death, his double lung and liver transplant, and so much more. If I got cepacia, I would lose all of those things.

It sucks for her, too, because she never had the opportunity to work in a hospital (because it's dangerous for other immunocompromised people as well). She has a cancer friend who has to wear a mask around her. She is isolated on a different floor and doesn't get to interact with other CF-ers, except my friends. I recognize that her CF experience is going to be far different from mine. I understand that she also feels like I've chosen all of those things over her. I guess I have <img src="i/expressions/face-icon-small-sad.gif" border="0">

It's a very difficult situation, but thank you so much for letting me know how you dealt with it when you thought you were in that position and how you deal with it now. It's nice to see that there are sisters who love each other so much that they don't let this sort of thing ruin their relationship.
 
T

theonlypirate

New member
Allisa35 - Thank you very much for your point of view.
<br />
<br />It helps to hear something from someone who actually at least thought they were in my situation. There are little differences, but it just isn't the same unless it's someone in your immediate family who is affected and you are not.
<br />
<br />Do you know how contagious Gladioli is? I've honestly never heard of it. I'll have to go on pubmed and research it.
<br />
<br />I think the main problem is that my entire life would change if I got cepacia. Her life has been determined because of it which really sucks. But I already have gone to conferences and have established teams with Great Strides. I'm in my second year of my relationship with my boyfriend. We've withstood his brother's death, his double lung and liver transplant, and so much more. If I got cepacia, I would lose all of those things.
<br />
<br />It sucks for her, too, because she never had the opportunity to work in a hospital (because it's dangerous for other immunocompromised people as well). She has a cancer friend who has to wear a mask around her. She is isolated on a different floor and doesn't get to interact with other CF-ers, except my friends. I recognize that her CF experience is going to be far different from mine. I understand that she also feels like I've chosen all of those things over her. I guess I have <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />It's a very difficult situation, but thank you so much for letting me know how you dealt with it when you thought you were in that position and how you deal with it now. It's nice to see that there are sisters who love each other so much that they don't let this sort of thing ruin their relationship.
 
T

theonlypirate

New member
sdelorenzo - Are you concerned about cross-contamination in general? Is your sister-in-law not? How do your family functions work? At mine, my sister and I sit the farthest away from each other that is possible, I wipe down surfaces often and wash my hands a lot (in a sink that has presumably been cleaned and is meant for just my use). I have my own towel to dry my hands and sometimes I wear a mask (especially if <i>I'm</i> sick). What precautions do you want to take that your sister-in-law won't, or would you prefer to just minimize contact?

One of the things that they use as predictor of lung disease course is age of first infection. From that point, a CF-er is considered different than their fellow CF-ers who have not colonized infection. I'm sure you know this, but I'm just reaffirming that I think it's very important to protect your kids! I think you're justified in trying. Once they're infected or they're adults, then it will be out of your hands, but you can do what you need to now.

Thanks for your input!
 
T

theonlypirate

New member
sdelorenzo - Are you concerned about cross-contamination in general? Is your sister-in-law not? How do your family functions work? At mine, my sister and I sit the farthest away from each other that is possible, I wipe down surfaces often and wash my hands a lot (in a sink that has presumably been cleaned and is meant for just my use). I have my own towel to dry my hands and sometimes I wear a mask (especially if <i>I'm</i> sick). What precautions do you want to take that your sister-in-law won't, or would you prefer to just minimize contact?

One of the things that they use as predictor of lung disease course is age of first infection. From that point, a CF-er is considered different than their fellow CF-ers who have not colonized infection. I'm sure you know this, but I'm just reaffirming that I think it's very important to protect your kids! I think you're justified in trying. Once they're infected or they're adults, then it will be out of your hands, but you can do what you need to now.

Thanks for your input!
 
T

theonlypirate

New member
sdelorenzo - Are you concerned about cross-contamination in general? Is your sister-in-law not? How do your family functions work? At mine, my sister and I sit the farthest away from each other that is possible, I wipe down surfaces often and wash my hands a lot (in a sink that has presumably been cleaned and is meant for just my use). I have my own towel to dry my hands and sometimes I wear a mask (especially if <i>I'm</i> sick). What precautions do you want to take that your sister-in-law won't, or would you prefer to just minimize contact?
<br />
<br />One of the things that they use as predictor of lung disease course is age of first infection. From that point, a CF-er is considered different than their fellow CF-ers who have not colonized infection. I'm sure you know this, but I'm just reaffirming that I think it's very important to protect your kids! I think you're justified in trying. Once they're infected or they're adults, then it will be out of your hands, but you can do what you need to now.
<br />
<br />Thanks for your input!
 
T

theonlypirate

New member
The Lost Miler - Thank you so much for your support...I'm so sorry to hear about your situation <img src="i/expressions/face-icon-small-sad.gif" border="0">

In our hospital, I think it's especially difficult to have cepacia. You're separated from others, in a crappier part of the hospital, have to have appointments elsewhere so I definitely see how difficult it would be to have it...that's why I avoid it so much.

I'm so glad that you try to help others out. It's very unselfish of you. And just so you know, it's absolutely nothing against <i>you</i>. Cepacia is just difficult to treat and it complicates things more when you get it.

As I told someone else, my whole life would change if I got it. I wouldn't be able to go to CF Conferences (which is work-related), Great Strides (I have a very successful team), or date my boyfriend (who I've been with for 2 years). My sister has always had cepacia so while it's determined some things in her life, it hasn't changed much. I have other reasons for not getting along with her and I think she confuses those with the cepacia thing. I don't want to touch each other or pass things back and forth not because I think <i>she's</i> disgusting, but because I'm afraid of getting what she has or giving her what I have.

I think I try to understand her point of view, but in the end I just don't. There's obviously something I'm missing. Did you ever feel hurt that others were afraid to receive gifts or make physical contact? Do you have CF friends who you meet up with? If so, what types of other precautions did you take? Did cepacia disrupt things in your life or have you kind of always had it, too? Sorry for all the questions, but I'm trying to understand how my sister might view things!
 
T

theonlypirate

New member
The Lost Miler - Thank you so much for your support...I'm so sorry to hear about your situation <img src="i/expressions/face-icon-small-sad.gif" border="0">

In our hospital, I think it's especially difficult to have cepacia. You're separated from others, in a crappier part of the hospital, have to have appointments elsewhere so I definitely see how difficult it would be to have it...that's why I avoid it so much.

I'm so glad that you try to help others out. It's very unselfish of you. And just so you know, it's absolutely nothing against <i>you</i>. Cepacia is just difficult to treat and it complicates things more when you get it.

As I told someone else, my whole life would change if I got it. I wouldn't be able to go to CF Conferences (which is work-related), Great Strides (I have a very successful team), or date my boyfriend (who I've been with for 2 years). My sister has always had cepacia so while it's determined some things in her life, it hasn't changed much. I have other reasons for not getting along with her and I think she confuses those with the cepacia thing. I don't want to touch each other or pass things back and forth not because I think <i>she's</i> disgusting, but because I'm afraid of getting what she has or giving her what I have.

I think I try to understand her point of view, but in the end I just don't. There's obviously something I'm missing. Did you ever feel hurt that others were afraid to receive gifts or make physical contact? Do you have CF friends who you meet up with? If so, what types of other precautions did you take? Did cepacia disrupt things in your life or have you kind of always had it, too? Sorry for all the questions, but I'm trying to understand how my sister might view things!
 
T

theonlypirate

New member
The Lost Miler - Thank you so much for your support...I'm so sorry to hear about your situation <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />In our hospital, I think it's especially difficult to have cepacia. You're separated from others, in a crappier part of the hospital, have to have appointments elsewhere so I definitely see how difficult it would be to have it...that's why I avoid it so much.
<br />
<br />I'm so glad that you try to help others out. It's very unselfish of you. And just so you know, it's absolutely nothing against <i>you</i>. Cepacia is just difficult to treat and it complicates things more when you get it.
<br />
<br />As I told someone else, my whole life would change if I got it. I wouldn't be able to go to CF Conferences (which is work-related), Great Strides (I have a very successful team), or date my boyfriend (who I've been with for 2 years). My sister has always had cepacia so while it's determined some things in her life, it hasn't changed much. I have other reasons for not getting along with her and I think she confuses those with the cepacia thing. I don't want to touch each other or pass things back and forth not because I think <i>she's</i> disgusting, but because I'm afraid of getting what she has or giving her what I have.
<br />
<br />I think I try to understand her point of view, but in the end I just don't. There's obviously something I'm missing. Did you ever feel hurt that others were afraid to receive gifts or make physical contact? Do you have CF friends who you meet up with? If so, what types of other precautions did you take? Did cepacia disrupt things in your life or have you kind of always had it, too? Sorry for all the questions, but I'm trying to understand how my sister might view things!
 
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