I just came across this website and I think it’s great!I am the mother of a child with CF.Ihave an 11yr. daughter who has CF and just got out of the hospital recently. She was diagnosed at 2 yr. This time in the hospital was different because they decided to give her a port!Oct. of 2011 washer last tune up and they had a very difficult time placing a picc, after the years her arms need some rest. So in Oct. they went for a central line in her neck it went fine. This time they want to just place a port! My first thought was she is not sick enough, she only goes for a tune up once a year why? But it was obvious after the last stay that her armshave had it. And they don’t like to keep placing acentral line in her neck so I understood thatthe best option would be a port. After her having this port for a few weeks now she is doing well, and adjusting to it. I just would like to hear from people whose child may have this and how they like it and any tips or suggestionsabout a port?They told me in time I will be able to access and flush for her, the thought of that makes me very nervous! Also, this time around they monitored her glucose levels, and from a few high readings they were ready to diagnosis her with CFRD? They did monitor her levels for 24 hrs.and they were not terrible, but I do not know much about CFRD, they gave me a great book to read about it, and once Endocrine team came to evaluate they said she was borderline and to just monitor her levels once a week and follow up in 3 months.? Any thoughts on what if anything I can do, or any advice?Thanks.
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ports/ CFRD
- Thread starter msosnow
- Start date
I just came across this website and I think it’s great!I am the mother of a child with CF.Ihave an 11yr. daughter who has CF and just got out of the hospital recently. She was diagnosed at 2 yr. This time in the hospital was different because they decided to give her a port!Oct. of 2011 washer last tune up and they had a very difficult time placing a picc, after the years her arms need some rest. So in Oct. they went for a central line in her neck it went fine. This time they want to just place a port! My first thought was she is not sick enough, she only goes for a tune up once a year why? But it was obvious after the last stay that her armshave had it. And they don’t like to keep placing acentral line in her neck so I understood thatthe best option would be a port. After her having this port for a few weeks now she is doing well, and adjusting to it. I just would like to hear from people whose child may have this and how they like it and any tips or suggestionsabout a port?They told me in time I will be able to access and flush for her, the thought of that makes me very nervous! Also, this time around they monitored her glucose levels, and from a few high readings they were ready to diagnosis her with CFRD? They did monitor her levels for 24 hrs.and they were not terrible, but I do not know much about CFRD, they gave me a great book to read about it, and once Endocrine team came to evaluate they said she was borderline and to just monitor her levels once a week and follow up in 3 months.? Any thoughts on what if anything I can do, or any advice?Thanks.
First welcome to the site. I hope you are able to find some support and friendship here as there are a lot of great people.
As for the port, while many see it as a 'bad' thing, it can be very liberating. No more pics, no more need to stick for bloodwork, you can remove to shower/swim/etc.
You WILL learn to access if you are willing, and in time it will just be part of life. When not in use it has to be flushed 1x/month. This means inserting the needle, pushing in a syringe of saline & one of heparin, pulling out the needle and she goes back to her day.
The number 1 thing to remember is that the port goes straight to the heart. Accessing (inserting) requires sterility--think operating room--so watch nurses like a hawk; some are great but some suck due to a lack of experience or a lack of understanding the risks. Giving meds or drawing blood is just gloves and an alcohol wipe, it is just when you put the needle in or change dressings that you must be sterile.
As for CFRD, I'll let those dealing with it answer your questions.
Good luck and welcome again <img src="i/expressions/face-icon-small-smile.gif" border="0">
As for the port, while many see it as a 'bad' thing, it can be very liberating. No more pics, no more need to stick for bloodwork, you can remove to shower/swim/etc.
You WILL learn to access if you are willing, and in time it will just be part of life. When not in use it has to be flushed 1x/month. This means inserting the needle, pushing in a syringe of saline & one of heparin, pulling out the needle and she goes back to her day.
The number 1 thing to remember is that the port goes straight to the heart. Accessing (inserting) requires sterility--think operating room--so watch nurses like a hawk; some are great but some suck due to a lack of experience or a lack of understanding the risks. Giving meds or drawing blood is just gloves and an alcohol wipe, it is just when you put the needle in or change dressings that you must be sterile.
As for CFRD, I'll let those dealing with it answer your questions.
Good luck and welcome again <img src="i/expressions/face-icon-small-smile.gif" border="0">
First welcome to the site. I hope you are able to find some support and friendship here as there are a lot of great people.
As for the port, while many see it as a 'bad' thing, it can be very liberating. No more pics, no more need to stick for bloodwork, you can remove to shower/swim/etc.
You WILL learn to access if you are willing, and in time it will just be part of life. When not in use it has to be flushed 1x/month. This means inserting the needle, pushing in a syringe of saline & one of heparin, pulling out the needle and she goes back to her day.
The number 1 thing to remember is that the port goes straight to the heart. Accessing (inserting) requires sterility--think operating room--so watch nurses like a hawk; some are great but some suck due to a lack of experience or a lack of understanding the risks. Giving meds or drawing blood is just gloves and an alcohol wipe, it is just when you put the needle in or change dressings that you must be sterile.
As for CFRD, I'll let those dealing with it answer your questions.
Good luck and welcome again <img src="i/expressions/face-icon-small-smile.gif" border="0">
As for the port, while many see it as a 'bad' thing, it can be very liberating. No more pics, no more need to stick for bloodwork, you can remove to shower/swim/etc.
You WILL learn to access if you are willing, and in time it will just be part of life. When not in use it has to be flushed 1x/month. This means inserting the needle, pushing in a syringe of saline & one of heparin, pulling out the needle and she goes back to her day.
The number 1 thing to remember is that the port goes straight to the heart. Accessing (inserting) requires sterility--think operating room--so watch nurses like a hawk; some are great but some suck due to a lack of experience or a lack of understanding the risks. Giving meds or drawing blood is just gloves and an alcohol wipe, it is just when you put the needle in or change dressings that you must be sterile.
As for CFRD, I'll let those dealing with it answer your questions.
Good luck and welcome again <img src="i/expressions/face-icon-small-smile.gif" border="0">
saveferris2009
New member
I would love to help with CFRD questions but it's very hard to read big blocks of text.
If you can edit your post to form 2-3 lines of text, I would be happy to help <img src="i/expressions/face-icon-small-smile.gif" border="0">
If you can edit your post to form 2-3 lines of text, I would be happy to help <img src="i/expressions/face-icon-small-smile.gif" border="0">
saveferris2009
New member
I would love to help with CFRD questions but it's very hard to read big blocks of text.
If you can edit your post to form 2-3 lines of text, I would be happy to help <img src="i/expressions/face-icon-small-smile.gif" border="0">
If you can edit your post to form 2-3 lines of text, I would be happy to help <img src="i/expressions/face-icon-small-smile.gif" border="0">
Tom,
Thanks you so much for you quick response! I do agree with you and I WILL learn as I did with the rest of her treatments! This site is awesome I love reading the forums just to hear the experience of others that are dealing with the same things. Have a good day! thanks again!
Thanks you so much for you quick response! I do agree with you and I WILL learn as I did with the rest of her treatments! This site is awesome I love reading the forums just to hear the experience of others that are dealing with the same things. Have a good day! thanks again!
Tom,
Thanks you so much for you quick response! I do agree with you and I WILL learn as I did with the rest of her treatments! This site is awesome I love reading the forums just to hear the experience of others that are dealing with the same things. Have a good day! thanks again!
Thanks you so much for you quick response! I do agree with you and I WILL learn as I did with the rest of her treatments! This site is awesome I love reading the forums just to hear the experience of others that are dealing with the same things. Have a good day! thanks again!
Also, this time around they monitored her glucose levels, and from a few high readings they were ready to diagnosis her with CFRD? They did monitor her levels for 24 hrs.and they were not terrible, but I do not know much about CFRD, they gave me a great book to read about it, and once Endocrine team came to evaluate they said she was borderline and to just monitor her levels once a week and follow up in 3 months.? Any thoughts on what if anything I can do, or any advice?Thanks.
Also, this time around they monitored her glucose levels, and from a few high readings they were ready to diagnosis her with CFRD? They did monitor her levels for 24 hrs.and they were not terrible, but I do not know much about CFRD, they gave me a great book to read about it, and once Endocrine team came to evaluate they said she was borderline and to just monitor her levels once a week and follow up in 3 months.? Any thoughts on what if anything I can do, or any advice?Thanks.
C
CF45sucks
Guest
Hi, and welcome to the site. I'm 47 with CF and have had CFRD since 2007. There is really nothing you can change to help or prevent CFRD it's just a fact of life with Cystic Fibrosis. The plugging in the pancreas gets to the point where enough insulin can't get into the blood stream and that is what causes the blood glucose levels to rise and eventually causing CFRD. Once the A1C levels get to high they will put your daughter on insulin.
At the point she is on insulin it will be very important to maintain proper glucose levels so that her A1C level stays within the desired range. It's hard at first but becomes easier as time passes and she understands how to count carbs to her insulin ration. I'm about to change from insulin injections to a pump because the highs and lows are just making me not feel good and I'm tired of feeling bad. The pump allows your body to work a little closer to the way it naturally works.
Hope this help just a little. CFRD is not easy but it's not the end of the world either, just something else that you have to keep up with and stay on top of.
At the point she is on insulin it will be very important to maintain proper glucose levels so that her A1C level stays within the desired range. It's hard at first but becomes easier as time passes and she understands how to count carbs to her insulin ration. I'm about to change from insulin injections to a pump because the highs and lows are just making me not feel good and I'm tired of feeling bad. The pump allows your body to work a little closer to the way it naturally works.
Hope this help just a little. CFRD is not easy but it's not the end of the world either, just something else that you have to keep up with and stay on top of.
C
CF45sucks
Guest
Hi, and welcome to the site. I'm 47 with CF and have had CFRD since 2007. There is really nothing you can change to help or prevent CFRD it's just a fact of life with Cystic Fibrosis. The plugging in the pancreas gets to the point where enough insulin can't get into the blood stream and that is what causes the blood glucose levels to rise and eventually causing CFRD. Once the A1C levels get to high they will put your daughter on insulin.
At the point she is on insulin it will be very important to maintain proper glucose levels so that her A1C level stays within the desired range. It's hard at first but becomes easier as time passes and she understands how to count carbs to her insulin ration. I'm about to change from insulin injections to a pump because the highs and lows are just making me not feel good and I'm tired of feeling bad. The pump allows your body to work a little closer to the way it naturally works.
Hope this help just a little. CFRD is not easy but it's not the end of the world either, just something else that you have to keep up with and stay on top of.
At the point she is on insulin it will be very important to maintain proper glucose levels so that her A1C level stays within the desired range. It's hard at first but becomes easier as time passes and she understands how to count carbs to her insulin ration. I'm about to change from insulin injections to a pump because the highs and lows are just making me not feel good and I'm tired of feeling bad. The pump allows your body to work a little closer to the way it naturally works.
Hope this help just a little. CFRD is not easy but it's not the end of the world either, just something else that you have to keep up with and stay on top of.
keeleyhearn
New member
Hi, I have also recently just had a port inserted and am also CFRD, if you want to chat or ask anything, please let me know. I´d love to help
keeleyhearn
New member
Hi, I have also recently just had a port inserted and am also CFRD, if you want to chat or ask anything, please let me know. I´d love to help
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CF45sucks</b></i> Once the A1C levels get to high they will put your daughter on insulin. </end quote>
A note about HbA1c in CF. It will often give a false low, because hemoglobin molecules in patients with CF do not live as long as in the unaffected population. The gold standard for CFRD diagnosis is a 2 hour OGTT.
A note about HbA1c in CF. It will often give a false low, because hemoglobin molecules in patients with CF do not live as long as in the unaffected population. The gold standard for CFRD diagnosis is a 2 hour OGTT.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CF45sucks</b></i> Once the A1C levels get to high they will put your daughter on insulin. </end quote>
A note about HbA1c in CF. It will often give a false low, because hemoglobin molecules in patients with CF do not live as long as in the unaffected population. The gold standard for CFRD diagnosis is a 2 hour OGTT.
A note about HbA1c in CF. It will often give a false low, because hemoglobin molecules in patients with CF do not live as long as in the unaffected population. The gold standard for CFRD diagnosis is a 2 hour OGTT.
Jonathan,
THanks that is great information to know. The team of doctors were doing a lot of talking and I thought the same thing the best way to tell was the 2 hour OGTT. The thing was when in hospital they drew her lab levels early in the a.m. and they were too high to do that test so they kept track for 24 hours and by the time the endocrine team came around they were not too concerned, apparently this is a slow process. I appreciate your insite. Thank you so much.
THanks that is great information to know. The team of doctors were doing a lot of talking and I thought the same thing the best way to tell was the 2 hour OGTT. The thing was when in hospital they drew her lab levels early in the a.m. and they were too high to do that test so they kept track for 24 hours and by the time the endocrine team came around they were not too concerned, apparently this is a slow process. I appreciate your insite. Thank you so much.
Jonathan,
THanks that is great information to know. The team of doctors were doing a lot of talking and I thought the same thing the best way to tell was the 2 hour OGTT. The thing was when in hospital they drew her lab levels early in the a.m. and they were too high to do that test so they kept track for 24 hours and by the time the endocrine team came around they were not too concerned, apparently this is a slow process. I appreciate your insite. Thank you so much.
THanks that is great information to know. The team of doctors were doing a lot of talking and I thought the same thing the best way to tell was the 2 hour OGTT. The thing was when in hospital they drew her lab levels early in the a.m. and they were too high to do that test so they kept track for 24 hours and by the time the endocrine team came around they were not too concerned, apparently this is a slow process. I appreciate your insite. Thank you so much.