Cepacia has ruined my relationship with my sister

T

theonlypirate

New member
Do you know what "the proper precautions" are?
<br />
<br />My parents forget that there's also an issue of me giving her pseudomonas. I'm pretty sure we have different strains, if she even has it at all. I've tried to find this out (from them and the meds she takes), but I don't think they pay much attention to the cultures and a lot of her meds could be for cepacia or pseudomonas.
<br />
<br />Better yet, do you know the people who were in this situation? Are they still around for me to contact? Would they mind being contacted?
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<br />Thanks for your comment. It makes me feel hopeful!
 
F

fr3ak

Guest
I know they never shared drinks and food utensils

they had separate toiletries (soap, shampoo, toothpaste etc)separate meds, separate nebs and everything was washed and sterilize individually...

They never wore a mask around each other, but they didnt kiss and hug each other either. They didnt go over the top with precautions a lot was just common sense, covering mouth when coughing, having separate tissues and disposing them into plastic bags, and good hygiene of hand washing etc

Both CF's were good friends of mine and I spent a lot of time with both of them, unfortuntely they have both passed away some time ago, but as I said they never cross contaminated each other and it wasnt as if they had only just cultured the Cepacia and Mrsa prior to passing away they cultured it for over 10 years and lived under the same roof culturing Cepacia as well as MRSA independantly...(both had other complications ontop of CF)

Good luck I hope you find some neutral ground!
 
F

fr3ak

Guest
I know they never shared drinks and food utensils

they had separate toiletries (soap, shampoo, toothpaste etc)separate meds, separate nebs and everything was washed and sterilize individually...

They never wore a mask around each other, but they didnt kiss and hug each other either. They didnt go over the top with precautions a lot was just common sense, covering mouth when coughing, having separate tissues and disposing them into plastic bags, and good hygiene of hand washing etc

Both CF's were good friends of mine and I spent a lot of time with both of them, unfortuntely they have both passed away some time ago, but as I said they never cross contaminated each other and it wasnt as if they had only just cultured the Cepacia and Mrsa prior to passing away they cultured it for over 10 years and lived under the same roof culturing Cepacia as well as MRSA independantly...(both had other complications ontop of CF)

Good luck I hope you find some neutral ground!
 
F

fr3ak

Guest
I know they never shared drinks and food utensils
<br />
<br />they had separate toiletries (soap, shampoo, toothpaste etc)separate meds, separate nebs and everything was washed and sterilize individually...
<br />
<br />They never wore a mask around each other, but they didnt kiss and hug each other either. They didnt go over the top with precautions a lot was just common sense, covering mouth when coughing, having separate tissues and disposing them into plastic bags, and good hygiene of hand washing etc
<br />
<br />Both CF's were good friends of mine and I spent a lot of time with both of them, unfortuntely they have both passed away some time ago, but as I said they never cross contaminated each other and it wasnt as if they had only just cultured the Cepacia and Mrsa prior to passing away they cultured it for over 10 years and lived under the same roof culturing Cepacia as well as MRSA independantly...(both had other complications ontop of CF)
<br />
<br />Good luck I hope you find some neutral ground!
 
T

Transplantmommy

New member
I knew it was you but just in case it wasn't, I didn't want to sound dumb. <img src="i/expressions/face-icon-small-wink.gif" border="0">

Does your sister and other family members think that everything is ok since your boyfriend has CF too and you're always around him? I know that he's had transplant, but you were with him before he did. Maybe they think that since you're around other CFers and don't mind being around them, then it's not so bad for you to be around your sister either, even though she does have cepacia. Even though I've had transplant, did they not see that I still took precautions and didn't get too close to her at the walk?

I'm sorry that they are being like that to you...maybe some family counseling to get them to understand you? I know that I can't help much...I wish I could help more!
 
T

Transplantmommy

New member
I knew it was you but just in case it wasn't, I didn't want to sound dumb. <img src="i/expressions/face-icon-small-wink.gif" border="0">

Does your sister and other family members think that everything is ok since your boyfriend has CF too and you're always around him? I know that he's had transplant, but you were with him before he did. Maybe they think that since you're around other CFers and don't mind being around them, then it's not so bad for you to be around your sister either, even though she does have cepacia. Even though I've had transplant, did they not see that I still took precautions and didn't get too close to her at the walk?

I'm sorry that they are being like that to you...maybe some family counseling to get them to understand you? I know that I can't help much...I wish I could help more!
 
T

Transplantmommy

New member
I knew it was you but just in case it wasn't, I didn't want to sound dumb. <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />
<br />Does your sister and other family members think that everything is ok since your boyfriend has CF too and you're always around him? I know that he's had transplant, but you were with him before he did. Maybe they think that since you're around other CFers and don't mind being around them, then it's not so bad for you to be around your sister either, even though she does have cepacia. Even though I've had transplant, did they not see that I still took precautions and didn't get too close to her at the walk?
<br />
<br />I'm sorry that they are being like that to you...maybe some family counseling to get them to understand you? I know that I can't help much...I wish I could help more!
 
N

nenbay

New member
I have a 7 year old son with CF and we have been in a similar situation. My husband's uncle moved in with my inlaws, he is paralyzed from the waste down, diabetes and has MRSA, topical and in the blood.

When we found out, we limited our time over there, using lots of sanitizer, and making sure none of us touched our faces AT ALL. We never touched him or anything he touched. We didn't use his bathroom, which was the only one down stairs.

This became a problem with my father in law and the uncle. They were highly offended and kept telling us that it's not that easy to get. My father in law would say he hasn't gotten it and he lives with the guy. I hate ignorant people!

Well it was a struggle and we started having to be careful around my father in law as well, because he wasn't being careful and we didn't want him to pass it to us either. It caused lots of tension and we weren't getting along well, but the uncle died a few months ago.

I feel like when it's them who have it or live by it, they don't think it's a big deal. I don't know why, I don't understand the logic. But I know two other people with MRSA who swear they don't have it and have even passed it on to their kids and still don't use precaution.

This is your LIFE. If someone isn't concerned with your health and well being than you don't need them. It may sound harsh, but I know I will do anything to keep my son healthy.

Touchy family situation... stay strong... you know what's right... sometimes turning a blind eye is easier... but is it right?
 
N

nenbay

New member
I have a 7 year old son with CF and we have been in a similar situation. My husband's uncle moved in with my inlaws, he is paralyzed from the waste down, diabetes and has MRSA, topical and in the blood.

When we found out, we limited our time over there, using lots of sanitizer, and making sure none of us touched our faces AT ALL. We never touched him or anything he touched. We didn't use his bathroom, which was the only one down stairs.

This became a problem with my father in law and the uncle. They were highly offended and kept telling us that it's not that easy to get. My father in law would say he hasn't gotten it and he lives with the guy. I hate ignorant people!

Well it was a struggle and we started having to be careful around my father in law as well, because he wasn't being careful and we didn't want him to pass it to us either. It caused lots of tension and we weren't getting along well, but the uncle died a few months ago.

I feel like when it's them who have it or live by it, they don't think it's a big deal. I don't know why, I don't understand the logic. But I know two other people with MRSA who swear they don't have it and have even passed it on to their kids and still don't use precaution.

This is your LIFE. If someone isn't concerned with your health and well being than you don't need them. It may sound harsh, but I know I will do anything to keep my son healthy.

Touchy family situation... stay strong... you know what's right... sometimes turning a blind eye is easier... but is it right?
 
N

nenbay

New member
I have a 7 year old son with CF and we have been in a similar situation. My husband's uncle moved in with my inlaws, he is paralyzed from the waste down, diabetes and has MRSA, topical and in the blood.
<br />
<br />When we found out, we limited our time over there, using lots of sanitizer, and making sure none of us touched our faces AT ALL. We never touched him or anything he touched. We didn't use his bathroom, which was the only one down stairs.
<br />
<br />This became a problem with my father in law and the uncle. They were highly offended and kept telling us that it's not that easy to get. My father in law would say he hasn't gotten it and he lives with the guy. I hate ignorant people!
<br />
<br />Well it was a struggle and we started having to be careful around my father in law as well, because he wasn't being careful and we didn't want him to pass it to us either. It caused lots of tension and we weren't getting along well, but the uncle died a few months ago.
<br />
<br />I feel like when it's them who have it or live by it, they don't think it's a big deal. I don't know why, I don't understand the logic. But I know two other people with MRSA who swear they don't have it and have even passed it on to their kids and still don't use precaution.
<br />
<br />This is your LIFE. If someone isn't concerned with your health and well being than you don't need them. It may sound harsh, but I know I will do anything to keep my son healthy.
<br />
<br />Touchy family situation... stay strong... you know what's right... sometimes turning a blind eye is easier... but is it right?
 
J

jamiebug

New member
I had cepacia for over 14 years, it is hard as a 'cepacia' patient to feel like we are some kind of disease. That might be where some her feelings stems from. I however, never wanted to take a risk of giving others cepacia. Mostly I wore masks around all my CF friends if I could. I was told 5 feet radius is safe, no drinking and eating off same stuff & no hugging/kissing. Washing your hands regularly is one of the best defenses. I know 2 sisters with CF. One has had Cepacia for longer than me and her sister only recently cultured it (so for like 20 years she was cepacia free). In reality you can pick up Cepacia in many places. . .especially in hospitals and clinics.

I have been told that CF camp was probably where I picked up my Cepacia. . .but I wouldn't trade the friendships, experience and support I got from camp and being around other Cystics. But that's a personal choice. Relationships are better medicine than about any thing else. You have a tough situation. Cepacia definitely puts limits on Cystics. . .it was hard for me to 'become cepacia' kinda like being a leper in the CF world. SOunds like perhaps neither of you can truly understand what you're both experiencing. I really send my love to you both! Hope you stay Cepacia free! but above that I hope you and your sister's relationship can improve. <3
 
J

jamiebug

New member
I had cepacia for over 14 years, it is hard as a 'cepacia' patient to feel like we are some kind of disease. That might be where some her feelings stems from. I however, never wanted to take a risk of giving others cepacia. Mostly I wore masks around all my CF friends if I could. I was told 5 feet radius is safe, no drinking and eating off same stuff & no hugging/kissing. Washing your hands regularly is one of the best defenses. I know 2 sisters with CF. One has had Cepacia for longer than me and her sister only recently cultured it (so for like 20 years she was cepacia free). In reality you can pick up Cepacia in many places. . .especially in hospitals and clinics.

I have been told that CF camp was probably where I picked up my Cepacia. . .but I wouldn't trade the friendships, experience and support I got from camp and being around other Cystics. But that's a personal choice. Relationships are better medicine than about any thing else. You have a tough situation. Cepacia definitely puts limits on Cystics. . .it was hard for me to 'become cepacia' kinda like being a leper in the CF world. SOunds like perhaps neither of you can truly understand what you're both experiencing. I really send my love to you both! Hope you stay Cepacia free! but above that I hope you and your sister's relationship can improve. <3
 
J

jamiebug

New member
I had cepacia for over 14 years, it is hard as a 'cepacia' patient to feel like we are some kind of disease. That might be where some her feelings stems from. I however, never wanted to take a risk of giving others cepacia. Mostly I wore masks around all my CF friends if I could. I was told 5 feet radius is safe, no drinking and eating off same stuff & no hugging/kissing. Washing your hands regularly is one of the best defenses. I know 2 sisters with CF. One has had Cepacia for longer than me and her sister only recently cultured it (so for like 20 years she was cepacia free). In reality you can pick up Cepacia in many places. . .especially in hospitals and clinics.
<br />
<br />I have been told that CF camp was probably where I picked up my Cepacia. . .but I wouldn't trade the friendships, experience and support I got from camp and being around other Cystics. But that's a personal choice. Relationships are better medicine than about any thing else. You have a tough situation. Cepacia definitely puts limits on Cystics. . .it was hard for me to 'become cepacia' kinda like being a leper in the CF world. SOunds like perhaps neither of you can truly understand what you're both experiencing. I really send my love to you both! Hope you stay Cepacia free! but above that I hope you and your sister's relationship can improve. <3
 
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