Cepacia has ruined my relationship with my sister

T

theonlypirate

New member
I am in a tough situation and (fortunately, I suppose) I haven't found anyone else who is in it. My sister has CF and has had cepacia for several years now. Since I also have CF, I have put forth great efforts to avoid getting it. I've moved out of my home, I wear a mask when I'm around them, I wash my hands a lot and I use bleach wipes on home surfaces when I visit.

Some background information about me is that I work in a CF research lab so I have the opportunity to go to CF conferences. I do Great Strides and I'm at one of the only hospitals that segregates CF patients in their own unit. As a result, I have made a lot of close friends with CF and I also started a relationship with someone else who has it. Cepacia patients are isolated in other parts of the hospital so I have learned that their bacteria is a greater risk than some of the others (which I already have anyway).

My sister gets personally offended every time I take precautions to avoid cross-contamination. She hates that I want her to sit in the seat furthest from me at restaurants and she refuses to help me in any of my efforts to avoid cepacia. It has completely destroyed our relationship, which wasn't extremely good to start with.

My nurse, who doesn't think I am overreacting, suggested that I go on forums and ask if anyone else with CF has had a sibling with cepacia. If so, could you tell me about your experience? What do you do to avoid cross-contamination? <b>Do</b> you take any precautions to avoid getting it? Has it hurt or helped your relationship?

I really need advice on this or at least some thoughts on what you would do if you were me. At this point, I feel so discouraged that my entire family doesn't help me in simple avoidance tactics, that I feel like I need to stop visiting home. I hate that I would essentially be punishing all of them, but it's not an emotional issue to me. I have myself, my boyfriend and my CF friends to think about. Thoughts? Comments?
 
T

theonlypirate

New member
I am in a tough situation and (fortunately, I suppose) I haven't found anyone else who is in it. My sister has CF and has had cepacia for several years now. Since I also have CF, I have put forth great efforts to avoid getting it. I've moved out of my home, I wear a mask when I'm around them, I wash my hands a lot and I use bleach wipes on home surfaces when I visit.

Some background information about me is that I work in a CF research lab so I have the opportunity to go to CF conferences. I do Great Strides and I'm at one of the only hospitals that segregates CF patients in their own unit. As a result, I have made a lot of close friends with CF and I also started a relationship with someone else who has it. Cepacia patients are isolated in other parts of the hospital so I have learned that their bacteria is a greater risk than some of the others (which I already have anyway).

My sister gets personally offended every time I take precautions to avoid cross-contamination. She hates that I want her to sit in the seat furthest from me at restaurants and she refuses to help me in any of my efforts to avoid cepacia. It has completely destroyed our relationship, which wasn't extremely good to start with.

My nurse, who doesn't think I am overreacting, suggested that I go on forums and ask if anyone else with CF has had a sibling with cepacia. If so, could you tell me about your experience? What do you do to avoid cross-contamination? <b>Do</b> you take any precautions to avoid getting it? Has it hurt or helped your relationship?

I really need advice on this or at least some thoughts on what you would do if you were me. At this point, I feel so discouraged that my entire family doesn't help me in simple avoidance tactics, that I feel like I need to stop visiting home. I hate that I would essentially be punishing all of them, but it's not an emotional issue to me. I have myself, my boyfriend and my CF friends to think about. Thoughts? Comments?
 
T

theonlypirate

New member
I am in a tough situation and (fortunately, I suppose) I haven't found anyone else who is in it. My sister has CF and has had cepacia for several years now. Since I also have CF, I have put forth great efforts to avoid getting it. I've moved out of my home, I wear a mask when I'm around them, I wash my hands a lot and I use bleach wipes on home surfaces when I visit.
<br />
<br />Some background information about me is that I work in a CF research lab so I have the opportunity to go to CF conferences. I do Great Strides and I'm at one of the only hospitals that segregates CF patients in their own unit. As a result, I have made a lot of close friends with CF and I also started a relationship with someone else who has it. Cepacia patients are isolated in other parts of the hospital so I have learned that their bacteria is a greater risk than some of the others (which I already have anyway).
<br />
<br />My sister gets personally offended every time I take precautions to avoid cross-contamination. She hates that I want her to sit in the seat furthest from me at restaurants and she refuses to help me in any of my efforts to avoid cepacia. It has completely destroyed our relationship, which wasn't extremely good to start with.
<br />
<br />My nurse, who doesn't think I am overreacting, suggested that I go on forums and ask if anyone else with CF has had a sibling with cepacia. If so, could you tell me about your experience? What do you do to avoid cross-contamination? <b>Do</b> you take any precautions to avoid getting it? Has it hurt or helped your relationship?
<br />
<br />I really need advice on this or at least some thoughts on what you would do if you were me. At this point, I feel so discouraged that my entire family doesn't help me in simple avoidance tactics, that I feel like I need to stop visiting home. I hate that I would essentially be punishing all of them, but it's not an emotional issue to me. I have myself, my boyfriend and my CF friends to think about. Thoughts? Comments?
 
J

JennifersHope

New member
I had a very good friend who had Cepecia, his twin brother never cultured Cepecia. My friend has since passed away but while he was alive, I know it was a sore spot for him because his twin didnt want to come to his house etc.

I have to say.. Cepecia effects people entirely different, this one friend I am talking about lived for years with it. My other friend I know died within a year of culturing it.

I firmly agree that you are doing the right thing by taking precautions it is your life. I am sorry that your sibling is not understanding of the fact that you want to keep yourself as healthy as possible. I don't know that hurt feelings can be avoided.

The best case I think would be if the sibling understood and supported you in trying to stay healthy and find creative ways to keep your relationship going.

I personally don't know what I would do. I wonder if you go to my hospital because my hospital does seperate Cepecia patients from regular CF patients.....

Sorry for your situation, but I don't think it is worth risking your life for a relationship that wasn't that great to begin with.
 
J

JennifersHope

New member
I had a very good friend who had Cepecia, his twin brother never cultured Cepecia. My friend has since passed away but while he was alive, I know it was a sore spot for him because his twin didnt want to come to his house etc.

I have to say.. Cepecia effects people entirely different, this one friend I am talking about lived for years with it. My other friend I know died within a year of culturing it.

I firmly agree that you are doing the right thing by taking precautions it is your life. I am sorry that your sibling is not understanding of the fact that you want to keep yourself as healthy as possible. I don't know that hurt feelings can be avoided.

The best case I think would be if the sibling understood and supported you in trying to stay healthy and find creative ways to keep your relationship going.

I personally don't know what I would do. I wonder if you go to my hospital because my hospital does seperate Cepecia patients from regular CF patients.....

Sorry for your situation, but I don't think it is worth risking your life for a relationship that wasn't that great to begin with.
 
J

JennifersHope

New member
I had a very good friend who had Cepecia, his twin brother never cultured Cepecia. My friend has since passed away but while he was alive, I know it was a sore spot for him because his twin didnt want to come to his house etc.
<br />
<br />I have to say.. Cepecia effects people entirely different, this one friend I am talking about lived for years with it. My other friend I know died within a year of culturing it.
<br />
<br />I firmly agree that you are doing the right thing by taking precautions it is your life. I am sorry that your sibling is not understanding of the fact that you want to keep yourself as healthy as possible. I don't know that hurt feelings can be avoided.
<br />
<br />The best case I think would be if the sibling understood and supported you in trying to stay healthy and find creative ways to keep your relationship going.
<br />
<br />I personally don't know what I would do. I wonder if you go to my hospital because my hospital does seperate Cepecia patients from regular CF patients.....
<br />
<br />Sorry for your situation, but I don't think it is worth risking your life for a relationship that wasn't that great to begin with.
 
T

theonlypirate

New member
Thank you so much for your reply. I wonder if we go to the same hospital too because I've heard of a patient who had cepacia who was fine and then when his/her sibling got it and he/she died. It made me scared about how differently I would manage with it. I go to UH.

Anyway, it is a horrible situation exacerbated by the fact that my sister is a teenager and a little emotional because of that. I try to be nice about it, but eventually lose my cool. We recently went on vacation (I had a separate hotel room) and she refused to do anything she had promised to do before we went. We ended up fighting just as much as I was afraid we would. It sort of seemed like the last straw because she felt offended and I felt like I couldn't trust her.

I try to explain to my parents that the hospital wouldn't separate our patients if it wasn't a big deal. My doctor insisted that I move out of my house. And my boyfriend recently got a transplant so he <i>really</i> can't afford to get it. His doctors don't even want him in the same room with my sister, but he loves me and wants to have a relationship with my family. Nothing seems to work for them :/

Even though you haven't had experience with this, thank you so much for your support!
 
T

theonlypirate

New member
Thank you so much for your reply. I wonder if we go to the same hospital too because I've heard of a patient who had cepacia who was fine and then when his/her sibling got it and he/she died. It made me scared about how differently I would manage with it. I go to UH.

Anyway, it is a horrible situation exacerbated by the fact that my sister is a teenager and a little emotional because of that. I try to be nice about it, but eventually lose my cool. We recently went on vacation (I had a separate hotel room) and she refused to do anything she had promised to do before we went. We ended up fighting just as much as I was afraid we would. It sort of seemed like the last straw because she felt offended and I felt like I couldn't trust her.

I try to explain to my parents that the hospital wouldn't separate our patients if it wasn't a big deal. My doctor insisted that I move out of my house. And my boyfriend recently got a transplant so he <i>really</i> can't afford to get it. His doctors don't even want him in the same room with my sister, but he loves me and wants to have a relationship with my family. Nothing seems to work for them :/

Even though you haven't had experience with this, thank you so much for your support!
 
T

theonlypirate

New member
Thank you so much for your reply. I wonder if we go to the same hospital too because I've heard of a patient who had cepacia who was fine and then when his/her sibling got it and he/she died. It made me scared about how differently I would manage with it. I go to UH.
<br />
<br />Anyway, it is a horrible situation exacerbated by the fact that my sister is a teenager and a little emotional because of that. I try to be nice about it, but eventually lose my cool. We recently went on vacation (I had a separate hotel room) and she refused to do anything she had promised to do before we went. We ended up fighting just as much as I was afraid we would. It sort of seemed like the last straw because she felt offended and I felt like I couldn't trust her.
<br />
<br />I try to explain to my parents that the hospital wouldn't separate our patients if it wasn't a big deal. My doctor insisted that I move out of my house. And my boyfriend recently got a transplant so he <i>really</i> can't afford to get it. His doctors don't even want him in the same room with my sister, but he loves me and wants to have a relationship with my family. Nothing seems to work for them :/
<br />
<br />Even though you haven't had experience with this, thank you so much for your support!
 
R

Ratatosk

Administrator
Staff member
I know the Krumrey's mom addressed this issue a few times. Her nephew has cepacia and she had to take precautions with her two girls. Visiting her parents house at separate time. She hasn't posted her for awhile.

There was also an individual who had MRSA and took pains to make sure her sister didn't culture it. They met outdoors. Her parents waited 5-7 days before visiting her sister after visting her....
 
R

Ratatosk

Administrator
Staff member
I know the Krumrey's mom addressed this issue a few times. Her nephew has cepacia and she had to take precautions with her two girls. Visiting her parents house at separate time. She hasn't posted her for awhile.

There was also an individual who had MRSA and took pains to make sure her sister didn't culture it. They met outdoors. Her parents waited 5-7 days before visiting her sister after visting her....
 
R

Ratatosk

Administrator
Staff member
I know the Krumrey's mom addressed this issue a few times. Her nephew has cepacia and she had to take precautions with her two girls. Visiting her parents house at separate time. She hasn't posted her for awhile.
<br />
<br />There was also an individual who had MRSA and took pains to make sure her sister didn't culture it. They met outdoors. Her parents waited 5-7 days before visiting her sister after visting her....
 
M

Mommafirst

Guest
I have no personal experience with this, but I really feel for you and your family. CF is such an awful disease, in that it really seperates those people who need one another most.

Have you considered getting your CF social worker involved? Maybe you and your parents could see a therapist that would help get THEM on the same page of how important it is to manage the cross contamination when it comes to cepacia.

One other idea...have you ever watched the show Private Practice? Last year they did an episode about a father and two kids who all had CF. The daughter winds up culturing cepacia and they make the father choose between being with her vs. raising his son. Its totally unrealistic and over the top, as you might find the discussions we had on here about how it was portrayed -- BUT it might be a way to show your sister and parents the severity and need for being more cautious.

Best of luck. This is tough situation.
 
M

Mommafirst

Guest
I have no personal experience with this, but I really feel for you and your family. CF is such an awful disease, in that it really seperates those people who need one another most.

Have you considered getting your CF social worker involved? Maybe you and your parents could see a therapist that would help get THEM on the same page of how important it is to manage the cross contamination when it comes to cepacia.

One other idea...have you ever watched the show Private Practice? Last year they did an episode about a father and two kids who all had CF. The daughter winds up culturing cepacia and they make the father choose between being with her vs. raising his son. Its totally unrealistic and over the top, as you might find the discussions we had on here about how it was portrayed -- BUT it might be a way to show your sister and parents the severity and need for being more cautious.

Best of luck. This is tough situation.
 
M

Mommafirst

Guest
I have no personal experience with this, but I really feel for you and your family. CF is such an awful disease, in that it really seperates those people who need one another most.
<br />
<br />Have you considered getting your CF social worker involved? Maybe you and your parents could see a therapist that would help get THEM on the same page of how important it is to manage the cross contamination when it comes to cepacia.
<br />
<br />One other idea...have you ever watched the show Private Practice? Last year they did an episode about a father and two kids who all had CF. The daughter winds up culturing cepacia and they make the father choose between being with her vs. raising his son. Its totally unrealistic and over the top, as you might find the discussions we had on here about how it was portrayed -- BUT it might be a way to show your sister and parents the severity and need for being more cautious.
<br />
<br />Best of luck. This is tough situation.
 
T

theonlypirate

New member
Thanks for your reply!

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.

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.

I'll try to find it online and tell you what I think. Thanks again for your input.
 
T

theonlypirate

New member
Thanks for your reply!

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.

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.

I'll try to find it online and tell you what I think. Thanks again for your input.
 
You must log in or register to reply here.
Top