portacath queries

M

mezmorizing

New member
Hi all,

I've recently signed up to the forums, so a quick intro. I'm a 16 yr old guy, live in Nottingham, England. I have something called the "second reinformation of CF". Me nor my doc's aren't too sure the specific's of it, but that's the NHS for you.

So, the whole reason for this thread ...

I've recently just got out of hospital after 2wks worth of IV's. Altogether I had 4 long lines and 2 catheter's, which was completely annoying. They had to be changed due to blockages, bursting, and one (suspected-)infected arm, which was not very nice. <img src="">
I've always had problems with my IV's, but now that my arms are being used too many times I'm thinking about other options. One of these is a portacath....

Now, I've only spoken (briefly) about this with my named nurse, so don't know much about it personally. My doctors are pretty bad, in my opinion. Because I have the second reinformation of CF, and not CF, i feel that I don't get the support I need (last week I got my first shrink (yay <img src="">), about a year ago I got my dietician, and about three years ago I got my physiotherapist (which I now have three of)). Considering that I am now 16, nearly 17, I think this is quite poor. I don't have a CF nurse, nor community CF nurse.
All of this is kinda understandable seen as they don't really know much about my illnesses, but more support would help.

So, been thinking about portacath's. My doctors never mention anything that could help me out, so I have to bring it up to them. Does anybody have one? Currently I'm only admitted for two regular yearly admissions (which last two weeks), but I admit myself multiple times throughout the year when I'm sick (through a "Pink Card").

I was wondering what are the drawbacks (as I only see the positive aspects) and exactly who would be considered.


Nick
 
M

mezmorizing

New member
Hi all,

I've recently signed up to the forums, so a quick intro. I'm a 16 yr old guy, live in Nottingham, England. I have something called the "second reinformation of CF". Me nor my doc's aren't too sure the specific's of it, but that's the NHS for you.

So, the whole reason for this thread ...

I've recently just got out of hospital after 2wks worth of IV's. Altogether I had 4 long lines and 2 catheter's, which was completely annoying. They had to be changed due to blockages, bursting, and one (suspected-)infected arm, which was not very nice. <img src="">
I've always had problems with my IV's, but now that my arms are being used too many times I'm thinking about other options. One of these is a portacath....

Now, I've only spoken (briefly) about this with my named nurse, so don't know much about it personally. My doctors are pretty bad, in my opinion. Because I have the second reinformation of CF, and not CF, i feel that I don't get the support I need (last week I got my first shrink (yay <img src="">), about a year ago I got my dietician, and about three years ago I got my physiotherapist (which I now have three of)). Considering that I am now 16, nearly 17, I think this is quite poor. I don't have a CF nurse, nor community CF nurse.
All of this is kinda understandable seen as they don't really know much about my illnesses, but more support would help.

So, been thinking about portacath's. My doctors never mention anything that could help me out, so I have to bring it up to them. Does anybody have one? Currently I'm only admitted for two regular yearly admissions (which last two weeks), but I admit myself multiple times throughout the year when I'm sick (through a "Pink Card").

I was wondering what are the drawbacks (as I only see the positive aspects) and exactly who would be considered.


Nick
 
M

mezmorizing

New member
Hi all,

I've recently signed up to the forums, so a quick intro. I'm a 16 yr old guy, live in Nottingham, England. I have something called the "second reinformation of CF". Me nor my doc's aren't too sure the specific's of it, but that's the NHS for you.

So, the whole reason for this thread ...

I've recently just got out of hospital after 2wks worth of IV's. Altogether I had 4 long lines and 2 catheter's, which was completely annoying. They had to be changed due to blockages, bursting, and one (suspected-)infected arm, which was not very nice. <img src="">
I've always had problems with my IV's, but now that my arms are being used too many times I'm thinking about other options. One of these is a portacath....

Now, I've only spoken (briefly) about this with my named nurse, so don't know much about it personally. My doctors are pretty bad, in my opinion. Because I have the second reinformation of CF, and not CF, i feel that I don't get the support I need (last week I got my first shrink (yay <img src="">), about a year ago I got my dietician, and about three years ago I got my physiotherapist (which I now have three of)). Considering that I am now 16, nearly 17, I think this is quite poor. I don't have a CF nurse, nor community CF nurse.
All of this is kinda understandable seen as they don't really know much about my illnesses, but more support would help.

So, been thinking about portacath's. My doctors never mention anything that could help me out, so I have to bring it up to them. Does anybody have one? Currently I'm only admitted for two regular yearly admissions (which last two weeks), but I admit myself multiple times throughout the year when I'm sick (through a "Pink Card").

I was wondering what are the drawbacks (as I only see the positive aspects) and exactly who would be considered.


Nick
 
M

meashamoo

New member
hi i am 18 i i have had a port since i was 12yrs. i have had 3 actually. the first replaced because of a kink which caused it to leak. the second stopped working. the new one is working well the port is wonderful to have because it is under the skin and practically unnoticable. i recommend it. it isn't a painful surgery in my oppinion either
courtney
email me if you like cg32888@yahoo.com
 
M

meashamoo

New member
hi i am 18 i i have had a port since i was 12yrs. i have had 3 actually. the first replaced because of a kink which caused it to leak. the second stopped working. the new one is working well the port is wonderful to have because it is under the skin and practically unnoticable. i recommend it. it isn't a painful surgery in my oppinion either
courtney
email me if you like cg32888@yahoo.com
 
M

meashamoo

New member
hi i am 18 i i have had a port since i was 12yrs. i have had 3 actually. the first replaced because of a kink which caused it to leak. the second stopped working. the new one is working well the port is wonderful to have because it is under the skin and practically unnoticable. i recommend it. it isn't a painful surgery in my oppinion either
courtney
email me if you like cg32888@yahoo.com
 
M

mezmorizing

New member
Where is it placed? Do you have a picture of it? On the ward that I go to, most have it in their chest, just below the collar bone. There however is one girl that has it in the right-hand side of the stomach. None of them however like to show others it (and that's not even mentioning the problems with us not being allowed to hang around with one another). I have seen images on Google Images, but I've fount none of them to be terrible good. Some look a little like my long lines, some look completely different.
I am allergic to most things which help my line/cat. stay in place, which is a bit of a worry. I know the ports are inserted underneath the skin, and a special needle is used to access this. Is the same material that holds a line/cat. in place used to help keep the port line in place? Also, I'm so used to lines/cats. now that i don't react to them, even when bursting, but was wonderting through anyone's experience, is the needle insertion of the port more painful than the initial long line/cat. insertion?

Nick.
 
M

mezmorizing

New member
Where is it placed? Do you have a picture of it? On the ward that I go to, most have it in their chest, just below the collar bone. There however is one girl that has it in the right-hand side of the stomach. None of them however like to show others it (and that's not even mentioning the problems with us not being allowed to hang around with one another). I have seen images on Google Images, but I've fount none of them to be terrible good. Some look a little like my long lines, some look completely different.
I am allergic to most things which help my line/cat. stay in place, which is a bit of a worry. I know the ports are inserted underneath the skin, and a special needle is used to access this. Is the same material that holds a line/cat. in place used to help keep the port line in place? Also, I'm so used to lines/cats. now that i don't react to them, even when bursting, but was wonderting through anyone's experience, is the needle insertion of the port more painful than the initial long line/cat. insertion?

Nick.
 
M

mezmorizing

New member
Where is it placed? Do you have a picture of it? On the ward that I go to, most have it in their chest, just below the collar bone. There however is one girl that has it in the right-hand side of the stomach. None of them however like to show others it (and that's not even mentioning the problems with us not being allowed to hang around with one another). I have seen images on Google Images, but I've fount none of them to be terrible good. Some look a little like my long lines, some look completely different.
I am allergic to most things which help my line/cat. stay in place, which is a bit of a worry. I know the ports are inserted underneath the skin, and a special needle is used to access this. Is the same material that holds a line/cat. in place used to help keep the port line in place? Also, I'm so used to lines/cats. now that i don't react to them, even when bursting, but was wonderting through anyone's experience, is the needle insertion of the port more painful than the initial long line/cat. insertion?

Nick.
 
R

robert321

New member
hey i don't know much about the ports because i don't have one, but have you concidered the pic line iv or a midline pic iv? they are ivs that go farther up your arm and you can keep them in longer without infection or rejection, they have a tube that goes up your blood vessel to basically next to your heart, i have only had one (the only iv i've ever had) and kept it in for 2 weeks without a problem, i don't have ivs often because my cf has been being controlled without it and the only time i had one is right after i was diagnosed, what is the second reinformation of cf? i've never heard of it myself if you don't mind will you explain it?

hey i saw where you are new here, welcome, i hope you find this forum informational.
 
R

robert321

New member
hey i don't know much about the ports because i don't have one, but have you concidered the pic line iv or a midline pic iv? they are ivs that go farther up your arm and you can keep them in longer without infection or rejection, they have a tube that goes up your blood vessel to basically next to your heart, i have only had one (the only iv i've ever had) and kept it in for 2 weeks without a problem, i don't have ivs often because my cf has been being controlled without it and the only time i had one is right after i was diagnosed, what is the second reinformation of cf? i've never heard of it myself if you don't mind will you explain it?

hey i saw where you are new here, welcome, i hope you find this forum informational.
 
R

robert321

New member
hey i don't know much about the ports because i don't have one, but have you concidered the pic line iv or a midline pic iv? they are ivs that go farther up your arm and you can keep them in longer without infection or rejection, they have a tube that goes up your blood vessel to basically next to your heart, i have only had one (the only iv i've ever had) and kept it in for 2 weeks without a problem, i don't have ivs often because my cf has been being controlled without it and the only time i had one is right after i was diagnosed, what is the second reinformation of cf? i've never heard of it myself if you don't mind will you explain it?

hey i saw where you are new here, welcome, i hope you find this forum informational.
 
R

robert321

New member
hey another random question, England has government healthcare like Canada has right? its not like the US where you have to pay for it is it? Here the hospitols are required to take care of you regardless of ability to pay but do expect payment, typically a rediculous amount too, you could go buy 3 beds for what they charge you to lay in the one at the hospitol lol
 
R

robert321

New member
hey another random question, England has government healthcare like Canada has right? its not like the US where you have to pay for it is it? Here the hospitols are required to take care of you regardless of ability to pay but do expect payment, typically a rediculous amount too, you could go buy 3 beds for what they charge you to lay in the one at the hospitol lol
 
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