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Cepacia Protocol
- Thread starter anonymous
- Start date
Caitlin,
You told me once before you see Dr. Donovan- sorry its hard to keep track.
It amazes me that in the same hospital where they are so concerned with inter-patient bacteria, they can be so lacking in the ER. My son had to use the ER two weeks ago because he was sick and the clinic was closing. Then, for the same reason this week. YUCK
EVERY sick kids with EVERY illness is there together with their families AND everyone uses the same triage area and bathroom. SOOOOOO GROSS!
I have a different question for you and the others w/cf who are in their early 20s...
At what point did your parents stop providing all your care? I can't imagine how my sons will be able to handle all their own stuff- maybe girls are more organized?
You told me once before you see Dr. Donovan- sorry its hard to keep track.
It amazes me that in the same hospital where they are so concerned with inter-patient bacteria, they can be so lacking in the ER. My son had to use the ER two weeks ago because he was sick and the clinic was closing. Then, for the same reason this week. YUCK
EVERY sick kids with EVERY illness is there together with their families AND everyone uses the same triage area and bathroom. SOOOOOO GROSS!
I have a different question for you and the others w/cf who are in their early 20s...
At what point did your parents stop providing all your care? I can't imagine how my sons will be able to handle all their own stuff- maybe girls are more organized?
Caitlin,
You told me once before you see Dr. Donovan- sorry its hard to keep track.
It amazes me that in the same hospital where they are so concerned with inter-patient bacteria, they can be so lacking in the ER. My son had to use the ER two weeks ago because he was sick and the clinic was closing. Then, for the same reason this week. YUCK
EVERY sick kids with EVERY illness is there together with their families AND everyone uses the same triage area and bathroom. SOOOOOO GROSS!
I have a different question for you and the others w/cf who are in their early 20s...
At what point did your parents stop providing all your care? I can't imagine how my sons will be able to handle all their own stuff- maybe girls are more organized?
You told me once before you see Dr. Donovan- sorry its hard to keep track.
It amazes me that in the same hospital where they are so concerned with inter-patient bacteria, they can be so lacking in the ER. My son had to use the ER two weeks ago because he was sick and the clinic was closing. Then, for the same reason this week. YUCK
EVERY sick kids with EVERY illness is there together with their families AND everyone uses the same triage area and bathroom. SOOOOOO GROSS!
I have a different question for you and the others w/cf who are in their early 20s...
At what point did your parents stop providing all your care? I can't imagine how my sons will be able to handle all their own stuff- maybe girls are more organized?
I graduated from high school in June 1986 and by December 1986, my Mom moved to Arizona for four years. I live in New York so once I had a job with benefits she was on her way. Prior to that I drove myself to doctors appointments & pretty much took charge of most of my care. My parents, of course, provided the insurance to do so. She came & visited & kept an eye on me. She even flew home when I was admitted one time contrary to my wishes, but shes a Mom so had to see for herself I was ok. I was always a take charge type of person. Still am. I am the youngest of my family, but my older siblings come to me....I thought I was suppose to go to them! LOL!
I graduated from high school in June 1986 and by December 1986, my Mom moved to Arizona for four years. I live in New York so once I had a job with benefits she was on her way. Prior to that I drove myself to doctors appointments & pretty much took charge of most of my care. My parents, of course, provided the insurance to do so. She came & visited & kept an eye on me. She even flew home when I was admitted one time contrary to my wishes, but shes a Mom so had to see for herself I was ok. I was always a take charge type of person. Still am. I am the youngest of my family, but my older siblings come to me....I thought I was suppose to go to them! LOL!
Haha well I dont think there is ever a point where parents just stop providing care, that is unless you move so far away from them that you never go home. I went to GW for two years in DC, and did all my own stuff---but at that point it was not much (really just taking pills and exercising). I still went home alot though, for my doctors appointments and jsut for the weekend...when I did I would get Chest PT from my therapist and from my mom.
I transfered to BC for two reasons, one that I didn't like GW and the other that I felt I needed to be close to home. Doing cleanouts and going to GW meant I would miss 3 weeks of school for them! It was ridiculous- now I only miss a few days, and then I go back to classes.
At this point I have an apartment in Boston, but I go home all the time (1/2 hour away). I am home right now- I have been for the past few weeks because I am doing a cleanout - so I drive to classes from here. My mom helps me with everything, but I could do it myself if I had to. For the first week of the cleanout they were away and I had to do most of it myself, with my boyfriend staying with me but he doesnt do my meds or anything. My mom does my midnight med if I am asleep, and my morning one because she is an early riser.
I think for CF patients a support system is key, and although we all probably could do everything on our own- and have to sometimes/ a lot of the time- it is important and great to have people around to help you.
Now, when I am at my apartment I do my cephtaz nebs and some type of airway clearance- all on my own of course. It is just habit- and if I dont do it, I feel awful, so....I have to.
There was def. a point when I was a teenager that I didn't want to do things, but at that time in my life I didn't have many health problems or many treatments. It will become a part of your kids daily life, just like CHest PT was mine. Growing up, I was not allowed to skip Chest PT except on Christmas- one day! As I got older, it became a part of my life and I would want to skip it, but didnt. It wasnt until college that I switched from Chest PT to exercise, and that worked for a while- but I was rigorous about it.
As thier health changes and naturally it will- and I dont mean for the worse, I just mean..treatments will change, they will have to make more choices...they will just see it as part of thier life. Plus at some point you realize that if you dont take care of yourself- you get sick. I think every single person on this board has had to go through that learning experience somehow- the rebellious stage. There is no way to avoid it!
This is a long winded reply I am sorry! Hope any advice was helpful- i feel like it was kind of ambiguous!
Caitlin
22 w/CF, b. cepacia
I transfered to BC for two reasons, one that I didn't like GW and the other that I felt I needed to be close to home. Doing cleanouts and going to GW meant I would miss 3 weeks of school for them! It was ridiculous- now I only miss a few days, and then I go back to classes.
At this point I have an apartment in Boston, but I go home all the time (1/2 hour away). I am home right now- I have been for the past few weeks because I am doing a cleanout - so I drive to classes from here. My mom helps me with everything, but I could do it myself if I had to. For the first week of the cleanout they were away and I had to do most of it myself, with my boyfriend staying with me but he doesnt do my meds or anything. My mom does my midnight med if I am asleep, and my morning one because she is an early riser.
I think for CF patients a support system is key, and although we all probably could do everything on our own- and have to sometimes/ a lot of the time- it is important and great to have people around to help you.
Now, when I am at my apartment I do my cephtaz nebs and some type of airway clearance- all on my own of course. It is just habit- and if I dont do it, I feel awful, so....I have to.
There was def. a point when I was a teenager that I didn't want to do things, but at that time in my life I didn't have many health problems or many treatments. It will become a part of your kids daily life, just like CHest PT was mine. Growing up, I was not allowed to skip Chest PT except on Christmas- one day! As I got older, it became a part of my life and I would want to skip it, but didnt. It wasnt until college that I switched from Chest PT to exercise, and that worked for a while- but I was rigorous about it.
As thier health changes and naturally it will- and I dont mean for the worse, I just mean..treatments will change, they will have to make more choices...they will just see it as part of thier life. Plus at some point you realize that if you dont take care of yourself- you get sick. I think every single person on this board has had to go through that learning experience somehow- the rebellious stage. There is no way to avoid it!
This is a long winded reply I am sorry! Hope any advice was helpful- i feel like it was kind of ambiguous!
Caitlin
22 w/CF, b. cepacia
Haha well I dont think there is ever a point where parents just stop providing care, that is unless you move so far away from them that you never go home. I went to GW for two years in DC, and did all my own stuff---but at that point it was not much (really just taking pills and exercising). I still went home alot though, for my doctors appointments and jsut for the weekend...when I did I would get Chest PT from my therapist and from my mom.
I transfered to BC for two reasons, one that I didn't like GW and the other that I felt I needed to be close to home. Doing cleanouts and going to GW meant I would miss 3 weeks of school for them! It was ridiculous- now I only miss a few days, and then I go back to classes.
At this point I have an apartment in Boston, but I go home all the time (1/2 hour away). I am home right now- I have been for the past few weeks because I am doing a cleanout - so I drive to classes from here. My mom helps me with everything, but I could do it myself if I had to. For the first week of the cleanout they were away and I had to do most of it myself, with my boyfriend staying with me but he doesnt do my meds or anything. My mom does my midnight med if I am asleep, and my morning one because she is an early riser.
I think for CF patients a support system is key, and although we all probably could do everything on our own- and have to sometimes/ a lot of the time- it is important and great to have people around to help you.
Now, when I am at my apartment I do my cephtaz nebs and some type of airway clearance- all on my own of course. It is just habit- and if I dont do it, I feel awful, so....I have to.
There was def. a point when I was a teenager that I didn't want to do things, but at that time in my life I didn't have many health problems or many treatments. It will become a part of your kids daily life, just like CHest PT was mine. Growing up, I was not allowed to skip Chest PT except on Christmas- one day! As I got older, it became a part of my life and I would want to skip it, but didnt. It wasnt until college that I switched from Chest PT to exercise, and that worked for a while- but I was rigorous about it.
As thier health changes and naturally it will- and I dont mean for the worse, I just mean..treatments will change, they will have to make more choices...they will just see it as part of thier life. Plus at some point you realize that if you dont take care of yourself- you get sick. I think every single person on this board has had to go through that learning experience somehow- the rebellious stage. There is no way to avoid it!
This is a long winded reply I am sorry! Hope any advice was helpful- i feel like it was kind of ambiguous!
Caitlin
22 w/CF, b. cepacia
I transfered to BC for two reasons, one that I didn't like GW and the other that I felt I needed to be close to home. Doing cleanouts and going to GW meant I would miss 3 weeks of school for them! It was ridiculous- now I only miss a few days, and then I go back to classes.
At this point I have an apartment in Boston, but I go home all the time (1/2 hour away). I am home right now- I have been for the past few weeks because I am doing a cleanout - so I drive to classes from here. My mom helps me with everything, but I could do it myself if I had to. For the first week of the cleanout they were away and I had to do most of it myself, with my boyfriend staying with me but he doesnt do my meds or anything. My mom does my midnight med if I am asleep, and my morning one because she is an early riser.
I think for CF patients a support system is key, and although we all probably could do everything on our own- and have to sometimes/ a lot of the time- it is important and great to have people around to help you.
Now, when I am at my apartment I do my cephtaz nebs and some type of airway clearance- all on my own of course. It is just habit- and if I dont do it, I feel awful, so....I have to.
There was def. a point when I was a teenager that I didn't want to do things, but at that time in my life I didn't have many health problems or many treatments. It will become a part of your kids daily life, just like CHest PT was mine. Growing up, I was not allowed to skip Chest PT except on Christmas- one day! As I got older, it became a part of my life and I would want to skip it, but didnt. It wasnt until college that I switched from Chest PT to exercise, and that worked for a while- but I was rigorous about it.
As thier health changes and naturally it will- and I dont mean for the worse, I just mean..treatments will change, they will have to make more choices...they will just see it as part of thier life. Plus at some point you realize that if you dont take care of yourself- you get sick. I think every single person on this board has had to go through that learning experience somehow- the rebellious stage. There is no way to avoid it!
This is a long winded reply I am sorry! Hope any advice was helpful- i feel like it was kind of ambiguous!
Caitlin
22 w/CF, b. cepacia
thelizardqueen
New member
I moved out on my own when I was 19. This is when I started going to all my appts by myself, doing all of my treatments on my own, etc. At 17 I started going to the adult centre, and that's when my mum stopped going in with me to all of my appts, but she still took me there. Before I was living with my boyfriend, my mum would come into town and help me when I was very sick, but my boyfriend does that now.
thelizardqueen
New member
I moved out on my own when I was 19. This is when I started going to all my appts by myself, doing all of my treatments on my own, etc. At 17 I started going to the adult centre, and that's when my mum stopped going in with me to all of my appts, but she still took me there. Before I was living with my boyfriend, my mum would come into town and help me when I was very sick, but my boyfriend does that now.
I know what you mean about protocol regarding cepacia. In my local hospital, (which is small), sometimes I am there to start the IV's until they are set up at home. I usually am in the ICU, because of the vent. What frightens me is that they do not gown up, the RT's aren't very careful with my neb cups, many times I am educating the nurses as far as what this is and why it is so important to use really good hygiene. Until I became a patient with this cepacia there, they had never heard of it. I used to work in this ICU, and the nurses are great, it's just that they don't see this bug often because it is such a small community, so they welcome any info about it and how to prevent spreading it around.
When I went to the CF center in Albany, they had me go on a day when no CF'ers were there and I was masked immediately even before entering the office, once I got into the office, I was escorted to a room right away, no waiting in the waiting rooms so I thought that was good.
To Dereks Dad, I am so sorry for your loss as well. My thoughts are going out to you. Jenn <img src="i/expressions/rose.gif" border="0">
When I went to the CF center in Albany, they had me go on a day when no CF'ers were there and I was masked immediately even before entering the office, once I got into the office, I was escorted to a room right away, no waiting in the waiting rooms so I thought that was good.
To Dereks Dad, I am so sorry for your loss as well. My thoughts are going out to you. Jenn <img src="i/expressions/rose.gif" border="0">
I know what you mean about protocol regarding cepacia. In my local hospital, (which is small), sometimes I am there to start the IV's until they are set up at home. I usually am in the ICU, because of the vent. What frightens me is that they do not gown up, the RT's aren't very careful with my neb cups, many times I am educating the nurses as far as what this is and why it is so important to use really good hygiene. Until I became a patient with this cepacia there, they had never heard of it. I used to work in this ICU, and the nurses are great, it's just that they don't see this bug often because it is such a small community, so they welcome any info about it and how to prevent spreading it around.
When I went to the CF center in Albany, they had me go on a day when no CF'ers were there and I was masked immediately even before entering the office, once I got into the office, I was escorted to a room right away, no waiting in the waiting rooms so I thought that was good.
To Dereks Dad, I am so sorry for your loss as well. My thoughts are going out to you. Jenn <img src="i/expressions/rose.gif" border="0">
When I went to the CF center in Albany, they had me go on a day when no CF'ers were there and I was masked immediately even before entering the office, once I got into the office, I was escorted to a room right away, no waiting in the waiting rooms so I thought that was good.
To Dereks Dad, I am so sorry for your loss as well. My thoughts are going out to you. Jenn <img src="i/expressions/rose.gif" border="0">
At our CF clinic, we now have a choice as to whether or not we want our own room or want to sit in the waiting room with everyone else. When we first started going, we were assisgned a room right away with a crib so DS could nap through out the day. But last year the nurse made some comment about our not getting our on room, so we asked and were told there were just too many patients. And besides "they never have had a patient with cepacia and if that happened, they'd just see that patient at the regular clinic instead of the CF clinic".
They changed the policy last year after one of the doctors attended a CF conference, but it's still a matter of letting the patients choose. Liza
They changed the policy last year after one of the doctors attended a CF conference, but it's still a matter of letting the patients choose. Liza
At our CF clinic, we now have a choice as to whether or not we want our own room or want to sit in the waiting room with everyone else. When we first started going, we were assisgned a room right away with a crib so DS could nap through out the day. But last year the nurse made some comment about our not getting our on room, so we asked and were told there were just too many patients. And besides "they never have had a patient with cepacia and if that happened, they'd just see that patient at the regular clinic instead of the CF clinic".
They changed the policy last year after one of the doctors attended a CF conference, but it's still a matter of letting the patients choose. Liza
They changed the policy last year after one of the doctors attended a CF conference, but it's still a matter of letting the patients choose. Liza
Anyone know of the CF foundation's stance on cross contamination at clinic? I called them and they are getting back to me. Supposedly there is a document that highlights what clinics should be doing to avoid Cf'er swapping germs. The question is can it be released to patients - the lady is getting back with me. I figure if we are all armed with what our clinics do right/wrong maybe we can all be a lot safer and big pains in the clinic people's booties if they are up to no good.
Anyone know of the CF foundation's stance on cross contamination at clinic? I called them and they are getting back to me. Supposedly there is a document that highlights what clinics should be doing to avoid Cf'er swapping germs. The question is can it be released to patients - the lady is getting back with me. I figure if we are all armed with what our clinics do right/wrong maybe we can all be a lot safer and big pains in the clinic people's booties if they are up to no good.
My CF clinic did some test last fall to see how much cross contamination their was between patients. It was found that there is very little in my clinic. When I go in the hospital, I have my own room and anyone who has been in other patients rooms must wear gloves, mask and gowns before entering my room. My doc is great when it comes to keeping the germs away from me. When I leave my hospital room I also wear a mask and gloves so I don't pick anything up from someone else.
My CF clinic did some test last fall to see how much cross contamination their was between patients. It was found that there is very little in my clinic. When I go in the hospital, I have my own room and anyone who has been in other patients rooms must wear gloves, mask and gowns before entering my room. My doc is great when it comes to keeping the germs away from me. When I leave my hospital room I also wear a mask and gloves so I don't pick anything up from someone else.