Why do you resist getting a port?

LouLou · Jul 3, 2009

I will likely be getting a port placed soon. In 2009 alone I've had 3 PICCS and am about to need one again. I haven't had any issues with PICC placement but my doctor feels it's time for a port due to the frequency of IV abx. The only reason I'm really hesitant at all to have one placed is 1) Don't like the idea of a foreign object forever inside me 2) Feel like getting a port is "the beginning of the end." I realize both of these reasons are stupid because a lot of people have pins for broken bones and it's no big deal and also many people live a long, long time with a port.

There seems to be many benefits to having a port. I live an hour from the hospital so I have to head there each time for a PICC of course when I'm feeling my worst then get home in time for the home healthcare med delivery. With a port, I can rest and wait while he calls in the meds and then just wait for home healthcare. Additionally, the risk of nosocomial infection by entering the hospital for PICC insertion or for any reason for that matter seems to be increasingly worrisome to him.

If you have a port and regret getting it, why?

If you have IVS more than 3 times a year and don't have a port yet, why not?

What reasons have you heard that PICC placement should be fully exhausted before considering a port?

General drawbacks of a port you've heard?

Thanks!

LouLou · Jul 3, 2009

I will likely be getting a port placed soon. In 2009 alone I've had 3 PICCS and am about to need one again. I haven't had any issues with PICC placement but my doctor feels it's time for a port due to the frequency of IV abx. The only reason I'm really hesitant at all to have one placed is 1) Don't like the idea of a foreign object forever inside me 2) Feel like getting a port is "the beginning of the end." I realize both of these reasons are stupid because a lot of people have pins for broken bones and it's no big deal and also many people live a long, long time with a port.

There seems to be many benefits to having a port. I live an hour from the hospital so I have to head there each time for a PICC of course when I'm feeling my worst then get home in time for the home healthcare med delivery. With a port, I can rest and wait while he calls in the meds and then just wait for home healthcare. Additionally, the risk of nosocomial infection by entering the hospital for PICC insertion or for any reason for that matter seems to be increasingly worrisome to him.

If you have a port and regret getting it, why?

If you have IVS more than 3 times a year and don't have a port yet, why not?

What reasons have you heard that PICC placement should be fully exhausted before considering a port?

General drawbacks of a port you've heard?

Thanks!

LouLou · Jul 3, 2009

I will likely be getting a port placed soon. In 2009 alone I've had 3 PICCS and am about to need one again. I haven't had any issues with PICC placement but my doctor feels it's time for a port due to the frequency of IV abx. The only reason I'm really hesitant at all to have one placed is 1) Don't like the idea of a foreign object forever inside me 2) Feel like getting a port is "the beginning of the end." I realize both of these reasons are stupid because a lot of people have pins for broken bones and it's no big deal and also many people live a long, long time with a port.

There seems to be many benefits to having a port. I live an hour from the hospital so I have to head there each time for a PICC of course when I'm feeling my worst then get home in time for the home healthcare med delivery. With a port, I can rest and wait while he calls in the meds and then just wait for home healthcare. Additionally, the risk of nosocomial infection by entering the hospital for PICC insertion or for any reason for that matter seems to be increasingly worrisome to him.

If you have a port and regret getting it, why?

If you have IVS more than 3 times a year and don't have a port yet, why not?

What reasons have you heard that PICC placement should be fully exhausted before considering a port?

General drawbacks of a port you've heard?

Thanks!

LouLou · Jul 3, 2009

I will likely be getting a port placed soon. In 2009 alone I've had 3 PICCS and am about to need one again. I haven't had any issues with PICC placement but my doctor feels it's time for a port due to the frequency of IV abx. The only reason I'm really hesitant at all to have one placed is 1) Don't like the idea of a foreign object forever inside me 2) Feel like getting a port is "the beginning of the end." I realize both of these reasons are stupid because a lot of people have pins for broken bones and it's no big deal and also many people live a long, long time with a port.

There seems to be many benefits to having a port. I live an hour from the hospital so I have to head there each time for a PICC of course when I'm feeling my worst then get home in time for the home healthcare med delivery. With a port, I can rest and wait while he calls in the meds and then just wait for home healthcare. Additionally, the risk of nosocomial infection by entering the hospital for PICC insertion or for any reason for that matter seems to be increasingly worrisome to him.

If you have a port and regret getting it, why?

If you have IVS more than 3 times a year and don't have a port yet, why not?

What reasons have you heard that PICC placement should be fully exhausted before considering a port?

General drawbacks of a port you've heard?

Thanks!

LouLou · Jul 3, 2009

I will likely be getting a port placed soon. In 2009 alone I've had 3 PICCS and am about to need one again. I haven't had any issues with PICC placement but my doctor feels it's time for a port due to the frequency of IV abx. The only reason I'm really hesitant at all to have one placed is 1) Don't like the idea of a foreign object forever inside me 2) Feel like getting a port is "the beginning of the end." I realize both of these reasons are stupid because a lot of people have pins for broken bones and it's no big deal and also many people live a long, long time with a port.
 
 There seems to be many benefits to having a port. I live an hour from the hospital so I have to head there each time for a PICC of course when I'm feeling my worst then get home in time for the home healthcare med delivery. With a port, I can rest and wait while he calls in the meds and then just wait for home healthcare. Additionally, the risk of nosocomial infection by entering the hospital for PICC insertion or for any reason for that matter seems to be increasingly worrisome to him.
 
 If you have a port and regret getting it, why?
 
 If you have IVS more than 3 times a year and don't have a port yet, why not?
 
 What reasons have you heard that PICC placement should be fully exhausted before considering a port?
 
 General drawbacks of a port you've heard?
 
 Thanks!

RonnieSharpe · Jul 3, 2009

I've had over 30 PICC lines and told them to go through every single arm vein I have before they can place a port. I get IV abx 3 times a year as well and every time I go in they try to convince me to get a port. Stupidly (admittedly) I want them to use up my arm veins first. Hopefully my ignorance won't come back to bite me too hard in the end. My reasons for not wanting a port: I feel like it would limit some of my activity in the gym. I don't want to do "the CF thing". I feel partly like I'm giving in at this point. I know that my reasons aren't good either but I have such a mental block. Sure, it will happen at some point, but I guess this is my way of partly controlling the outcome.

Ronnie

RonnieSharpe · Jul 3, 2009

I've had over 30 PICC lines and told them to go through every single arm vein I have before they can place a port. I get IV abx 3 times a year as well and every time I go in they try to convince me to get a port. Stupidly (admittedly) I want them to use up my arm veins first. Hopefully my ignorance won't come back to bite me too hard in the end. My reasons for not wanting a port: I feel like it would limit some of my activity in the gym. I don't want to do "the CF thing". I feel partly like I'm giving in at this point. I know that my reasons aren't good either but I have such a mental block. Sure, it will happen at some point, but I guess this is my way of partly controlling the outcome.

Ronnie

RonnieSharpe · Jul 3, 2009

I've had over 30 PICC lines and told them to go through every single arm vein I have before they can place a port. I get IV abx 3 times a year as well and every time I go in they try to convince me to get a port. Stupidly (admittedly) I want them to use up my arm veins first. Hopefully my ignorance won't come back to bite me too hard in the end. My reasons for not wanting a port: I feel like it would limit some of my activity in the gym. I don't want to do "the CF thing". I feel partly like I'm giving in at this point. I know that my reasons aren't good either but I have such a mental block. Sure, it will happen at some point, but I guess this is my way of partly controlling the outcome.

Ronnie

RonnieSharpe · Jul 3, 2009

I've had over 30 PICC lines and told them to go through every single arm vein I have before they can place a port. I get IV abx 3 times a year as well and every time I go in they try to convince me to get a port. Stupidly (admittedly) I want them to use up my arm veins first. Hopefully my ignorance won't come back to bite me too hard in the end. My reasons for not wanting a port: I feel like it would limit some of my activity in the gym. I don't want to do "the CF thing". I feel partly like I'm giving in at this point. I know that my reasons aren't good either but I have such a mental block. Sure, it will happen at some point, but I guess this is my way of partly controlling the outcome.

Ronnie

RonnieSharpe · Jul 3, 2009

I've had over 30 PICC lines and told them to go through every single arm vein I have before they can place a port. I get IV abx 3 times a year as well and every time I go in they try to convince me to get a port. Stupidly (admittedly) I want them to use up my arm veins first. Hopefully my ignorance won't come back to bite me too hard in the end. My reasons for not wanting a port: I feel like it would limit some of my activity in the gym. I don't want to do "the CF thing". I feel partly like I'm giving in at this point. I know that my reasons aren't good either but I have such a mental block. Sure, it will happen at some point, but I guess this is my way of partly controlling the outcome.
 
 Ronnie

Jane · Jul 3, 2009

My son resisted because it was an unknown. He had such trouble with PICCs (allergic rash from dressing mostly) that finally a port looked like a better option. He is glad he did it but he is very self-conscious of the bump on his chest (more so than the bump on his belly from the g-tube button). He tends to walk with a little hunch to hide it.

As far as exercising or any activities, the port has been great! It doesn't interfere at all- even when accessed.

Jane · Jul 3, 2009

My son resisted because it was an unknown. He had such trouble with PICCs (allergic rash from dressing mostly) that finally a port looked like a better option. He is glad he did it but he is very self-conscious of the bump on his chest (more so than the bump on his belly from the g-tube button). He tends to walk with a little hunch to hide it.

As far as exercising or any activities, the port has been great! It doesn't interfere at all- even when accessed.

Jane · Jul 3, 2009

My son resisted because it was an unknown. He had such trouble with PICCs (allergic rash from dressing mostly) that finally a port looked like a better option. He is glad he did it but he is very self-conscious of the bump on his chest (more so than the bump on his belly from the g-tube button). He tends to walk with a little hunch to hide it.

As far as exercising or any activities, the port has been great! It doesn't interfere at all- even when accessed.

Jane · Jul 3, 2009

My son resisted because it was an unknown. He had such trouble with PICCs (allergic rash from dressing mostly) that finally a port looked like a better option. He is glad he did it but he is very self-conscious of the bump on his chest (more so than the bump on his belly from the g-tube button). He tends to walk with a little hunch to hide it.

As far as exercising or any activities, the port has been great! It doesn't interfere at all- even when accessed.

Jane · Jul 3, 2009

My son resisted because it was an unknown. He had such trouble with PICCs (allergic rash from dressing mostly) that finally a port looked like a better option. He is glad he did it but he is very self-conscious of the bump on his chest (more so than the bump on his belly from the g-tube button). He tends to walk with a little hunch to hide it.
 
 As far as exercising or any activities, the port has been great! It doesn't interfere at all- even when accessed.

dramamama · Jul 3, 2009

Lauren-
I felt EXACTLY like you about the port.
*I didn't think I was sick enough (I got IVs 2 times a year)
*I thought I was admitting defeat to the disease...a port=CF was winning
*I was an actress and more than vain about my body!! I was too healthy looking to have a port.
*Long Lines worked fine for me....
*I was single and didn't want the thing having to be explained to a cute man

All of the above seemed like great reasons to not get a port. Why have to take on extra maintenance every month, when I really only IVs twice a year? That seemed totally dumb. I think the only reason I could think of to get a port was I began to dread colds bc it meant a trip to the hospital to start meds. I hated any kind of digging around in a vein...it made me CRAZY. And if the darn PICC wouldn't advance I would just bawl... There was an element of stress that came along with PICCs that I really hated.

At the time my pfts were in the mid to low 60's and i thought, no one this healthy has a port. My great friend who was very sick with CF (has since had lung and kidney transplant) said, "IT will change your life..." I thought that was crazy... How could a freaking piece of silicon change my life??? Plus, she was literally on her death bed and I was NOT sick like her...I didn't realize she wanted better health for me<img src="">

Well, I was in LA and away from my family and getting sick started to mean I had to have my mom fly in bc I couldn't be as active when on IVs. Couldn't work out as hard (can't really bend my arm too well), cooking was a pain, a PICC always felt a liitle uncomfortable for me.... Also, I wanted the ability to do IVs and still go on auditions.

I finally decided it was about quality of life and being able to say, "It is my decision and not CF's decision to fight how I want to fight." I want to do all things when on IVs!!!

So, I bit the bullet, and Angi was right. It has been the best decision I have ever made regarding my health....hands down best decision ever!!!

Why I love my port...
*I don't waffle on whether on not to do IVs. I am ready to get started the minute I get sick which meant less damage to my lungs and feeling better faster.
*No one knew I was on IVs unless I told them.
*No more hospitals!!!!! I am germ-phobic and loved that fact.
*I can do the stick, maintenance and IVs on my own and don't have to depend on other people. I think the independence is so important to feel like we have a little control of our CF... It was like one day I was at my disease's mercy and the next day, I was flipping it the bird!!!

I have a pedi line and it is low profile and tiny. It is in my breast tissue and is COMPLETELY invisible. I am an A cup, but have it on the side and no one can tell.
I am on 7 years with this port. I have had 3. One lasted 3 years (was in my femoral vein in my groin...don't recommend that), one never worked and was in my arm... I had it a few months. And this last one...she is my best weapon!!

I could go on and on about why it changes your life. But, the deal is, you will never realize it, until you have one. We have enough things to think about without having to burden ourselves with the STRESS of starting IVs... Well, at least for me it was stressful.

There are risks..infection, clotting off, etc, but you have that with a PICC too. If you have a remotely busy life, I can't tell you how much it will help.

Also, a port is not the end. I have been stable for close to ten years (few ups and downs on the way) and that just happens to be how long I have had my port. Before that I was loosing lung function a little a year...

I totally respect any cfers decision either way. But, know this, NO ONE was more against a port than me....my family always gives me crap now when I say I LOVE my port, they remember how adamant I was about NOT GETTING ONE EVER!!! When my first one died, I cried like a baby bc I felt like it was my WEAPON against this insidious disease. This was before I went on the healthy eating, glutathione lifestyle.

It is so weird how it changes your life...

Best of luck on making a decision... If you ever need to talk, pm me...
hugs.
mandy

dramamama · Jul 3, 2009

Lauren-
I felt EXACTLY like you about the port.
*I didn't think I was sick enough (I got IVs 2 times a year)
*I thought I was admitting defeat to the disease...a port=CF was winning
*I was an actress and more than vain about my body!! I was too healthy looking to have a port.
*Long Lines worked fine for me....
*I was single and didn't want the thing having to be explained to a cute man

All of the above seemed like great reasons to not get a port. Why have to take on extra maintenance every month, when I really only IVs twice a year? That seemed totally dumb. I think the only reason I could think of to get a port was I began to dread colds bc it meant a trip to the hospital to start meds. I hated any kind of digging around in a vein...it made me CRAZY. And if the darn PICC wouldn't advance I would just bawl... There was an element of stress that came along with PICCs that I really hated.

At the time my pfts were in the mid to low 60's and i thought, no one this healthy has a port. My great friend who was very sick with CF (has since had lung and kidney transplant) said, "IT will change your life..." I thought that was crazy... How could a freaking piece of silicon change my life??? Plus, she was literally on her death bed and I was NOT sick like her...I didn't realize she wanted better health for me<img src="">

Well, I was in LA and away from my family and getting sick started to mean I had to have my mom fly in bc I couldn't be as active when on IVs. Couldn't work out as hard (can't really bend my arm too well), cooking was a pain, a PICC always felt a liitle uncomfortable for me.... Also, I wanted the ability to do IVs and still go on auditions.

I finally decided it was about quality of life and being able to say, "It is my decision and not CF's decision to fight how I want to fight." I want to do all things when on IVs!!!

So, I bit the bullet, and Angi was right. It has been the best decision I have ever made regarding my health....hands down best decision ever!!!

Why I love my port...
*I don't waffle on whether on not to do IVs. I am ready to get started the minute I get sick which meant less damage to my lungs and feeling better faster.
*No one knew I was on IVs unless I told them.
*No more hospitals!!!!! I am germ-phobic and loved that fact.
*I can do the stick, maintenance and IVs on my own and don't have to depend on other people. I think the independence is so important to feel like we have a little control of our CF... It was like one day I was at my disease's mercy and the next day, I was flipping it the bird!!!

I have a pedi line and it is low profile and tiny. It is in my breast tissue and is COMPLETELY invisible. I am an A cup, but have it on the side and no one can tell.
I am on 7 years with this port. I have had 3. One lasted 3 years (was in my femoral vein in my groin...don't recommend that), one never worked and was in my arm... I had it a few months. And this last one...she is my best weapon!!

I could go on and on about why it changes your life. But, the deal is, you will never realize it, until you have one. We have enough things to think about without having to burden ourselves with the STRESS of starting IVs... Well, at least for me it was stressful.

There are risks..infection, clotting off, etc, but you have that with a PICC too. If you have a remotely busy life, I can't tell you how much it will help.

Also, a port is not the end. I have been stable for close to ten years (few ups and downs on the way) and that just happens to be how long I have had my port. Before that I was loosing lung function a little a year...

I totally respect any cfers decision either way. But, know this, NO ONE was more against a port than me....my family always gives me crap now when I say I LOVE my port, they remember how adamant I was about NOT GETTING ONE EVER!!! When my first one died, I cried like a baby bc I felt like it was my WEAPON against this insidious disease. This was before I went on the healthy eating, glutathione lifestyle.

It is so weird how it changes your life...

Best of luck on making a decision... If you ever need to talk, pm me...
hugs.
mandy

dramamama · Jul 3, 2009

Lauren-
I felt EXACTLY like you about the port.
*I didn't think I was sick enough (I got IVs 2 times a year)
*I thought I was admitting defeat to the disease...a port=CF was winning
*I was an actress and more than vain about my body!! I was too healthy looking to have a port.
*Long Lines worked fine for me....
*I was single and didn't want the thing having to be explained to a cute man

All of the above seemed like great reasons to not get a port. Why have to take on extra maintenance every month, when I really only IVs twice a year? That seemed totally dumb. I think the only reason I could think of to get a port was I began to dread colds bc it meant a trip to the hospital to start meds. I hated any kind of digging around in a vein...it made me CRAZY. And if the darn PICC wouldn't advance I would just bawl... There was an element of stress that came along with PICCs that I really hated.

At the time my pfts were in the mid to low 60's and i thought, no one this healthy has a port. My great friend who was very sick with CF (has since had lung and kidney transplant) said, "IT will change your life..." I thought that was crazy... How could a freaking piece of silicon change my life??? Plus, she was literally on her death bed and I was NOT sick like her...I didn't realize she wanted better health for me<img src="">

Well, I was in LA and away from my family and getting sick started to mean I had to have my mom fly in bc I couldn't be as active when on IVs. Couldn't work out as hard (can't really bend my arm too well), cooking was a pain, a PICC always felt a liitle uncomfortable for me.... Also, I wanted the ability to do IVs and still go on auditions.

I finally decided it was about quality of life and being able to say, "It is my decision and not CF's decision to fight how I want to fight." I want to do all things when on IVs!!!

So, I bit the bullet, and Angi was right. It has been the best decision I have ever made regarding my health....hands down best decision ever!!!

Why I love my port...
*I don't waffle on whether on not to do IVs. I am ready to get started the minute I get sick which meant less damage to my lungs and feeling better faster.
*No one knew I was on IVs unless I told them.
*No more hospitals!!!!! I am germ-phobic and loved that fact.
*I can do the stick, maintenance and IVs on my own and don't have to depend on other people. I think the independence is so important to feel like we have a little control of our CF... It was like one day I was at my disease's mercy and the next day, I was flipping it the bird!!!

I have a pedi line and it is low profile and tiny. It is in my breast tissue and is COMPLETELY invisible. I am an A cup, but have it on the side and no one can tell.
I am on 7 years with this port. I have had 3. One lasted 3 years (was in my femoral vein in my groin...don't recommend that), one never worked and was in my arm... I had it a few months. And this last one...she is my best weapon!!

I could go on and on about why it changes your life. But, the deal is, you will never realize it, until you have one. We have enough things to think about without having to burden ourselves with the STRESS of starting IVs... Well, at least for me it was stressful.

There are risks..infection, clotting off, etc, but you have that with a PICC too. If you have a remotely busy life, I can't tell you how much it will help.

Also, a port is not the end. I have been stable for close to ten years (few ups and downs on the way) and that just happens to be how long I have had my port. Before that I was loosing lung function a little a year...

I totally respect any cfers decision either way. But, know this, NO ONE was more against a port than me....my family always gives me crap now when I say I LOVE my port, they remember how adamant I was about NOT GETTING ONE EVER!!! When my first one died, I cried like a baby bc I felt like it was my WEAPON against this insidious disease. This was before I went on the healthy eating, glutathione lifestyle.

It is so weird how it changes your life...

Best of luck on making a decision... If you ever need to talk, pm me...
hugs.
mandy

dramamama · Jul 3, 2009

Lauren-
I felt EXACTLY like you about the port.
*I didn't think I was sick enough (I got IVs 2 times a year)
*I thought I was admitting defeat to the disease...a port=CF was winning
*I was an actress and more than vain about my body!! I was too healthy looking to have a port.
*Long Lines worked fine for me....
*I was single and didn't want the thing having to be explained to a cute man

All of the above seemed like great reasons to not get a port. Why have to take on extra maintenance every month, when I really only IVs twice a year? That seemed totally dumb. I think the only reason I could think of to get a port was I began to dread colds bc it meant a trip to the hospital to start meds. I hated any kind of digging around in a vein...it made me CRAZY. And if the darn PICC wouldn't advance I would just bawl... There was an element of stress that came along with PICCs that I really hated.

At the time my pfts were in the mid to low 60's and i thought, no one this healthy has a port. My great friend who was very sick with CF (has since had lung and kidney transplant) said, "IT will change your life..." I thought that was crazy... How could a freaking piece of silicon change my life??? Plus, she was literally on her death bed and I was NOT sick like her...I didn't realize she wanted better health for me<img src="">

Well, I was in LA and away from my family and getting sick started to mean I had to have my mom fly in bc I couldn't be as active when on IVs. Couldn't work out as hard (can't really bend my arm too well), cooking was a pain, a PICC always felt a liitle uncomfortable for me.... Also, I wanted the ability to do IVs and still go on auditions.

I finally decided it was about quality of life and being able to say, "It is my decision and not CF's decision to fight how I want to fight." I want to do all things when on IVs!!!

So, I bit the bullet, and Angi was right. It has been the best decision I have ever made regarding my health....hands down best decision ever!!!

Why I love my port...
*I don't waffle on whether on not to do IVs. I am ready to get started the minute I get sick which meant less damage to my lungs and feeling better faster.
*No one knew I was on IVs unless I told them.
*No more hospitals!!!!! I am germ-phobic and loved that fact.
*I can do the stick, maintenance and IVs on my own and don't have to depend on other people. I think the independence is so important to feel like we have a little control of our CF... It was like one day I was at my disease's mercy and the next day, I was flipping it the bird!!!

I have a pedi line and it is low profile and tiny. It is in my breast tissue and is COMPLETELY invisible. I am an A cup, but have it on the side and no one can tell.
I am on 7 years with this port. I have had 3. One lasted 3 years (was in my femoral vein in my groin...don't recommend that), one never worked and was in my arm... I had it a few months. And this last one...she is my best weapon!!

I could go on and on about why it changes your life. But, the deal is, you will never realize it, until you have one. We have enough things to think about without having to burden ourselves with the STRESS of starting IVs... Well, at least for me it was stressful.

There are risks..infection, clotting off, etc, but you have that with a PICC too. If you have a remotely busy life, I can't tell you how much it will help.

Also, a port is not the end. I have been stable for close to ten years (few ups and downs on the way) and that just happens to be how long I have had my port. Before that I was loosing lung function a little a year...

I totally respect any cfers decision either way. But, know this, NO ONE was more against a port than me....my family always gives me crap now when I say I LOVE my port, they remember how adamant I was about NOT GETTING ONE EVER!!! When my first one died, I cried like a baby bc I felt like it was my WEAPON against this insidious disease. This was before I went on the healthy eating, glutathione lifestyle.

It is so weird how it changes your life...

Best of luck on making a decision... If you ever need to talk, pm me...
hugs.
mandy

dramamama · Jul 3, 2009

Lauren-
 I felt EXACTLY like you about the port.
 *I didn't think I was sick enough (I got IVs 2 times a year)
 *I thought I was admitting defeat to the disease...a port=CF was winning
 *I was an actress and more than vain about my body!! I was too healthy looking to have a port.
 *Long Lines worked fine for me....
 *I was single and didn't want the thing having to be explained to a cute man
 
 All of the above seemed like great reasons to not get a port. Why have to take on extra maintenance every month, when I really only IVs twice a year? That seemed totally dumb. I think the only reason I could think of to get a port was I began to dread colds bc it meant a trip to the hospital to start meds. I hated any kind of digging around in a vein...it made me CRAZY. And if the darn PICC wouldn't advance I would just bawl... There was an element of stress that came along with PICCs that I really hated.
 
 At the time my pfts were in the mid to low 60's and i thought, no one this healthy has a port. My great friend who was very sick with CF (has since had lung and kidney transplant) said, "IT will change your life..." I thought that was crazy... How could a freaking piece of silicon change my life??? Plus, she was literally on her death bed and I was NOT sick like her...I didn't realize she wanted better health for me<img src="">
 
 Well, I was in LA and away from my family and getting sick started to mean I had to have my mom fly in bc I couldn't be as active when on IVs. Couldn't work out as hard (can't really bend my arm too well), cooking was a pain, a PICC always felt a liitle uncomfortable for me.... Also, I wanted the ability to do IVs and still go on auditions.
 
 I finally decided it was about quality of life and being able to say, "It is my decision and not CF's decision to fight how I want to fight." I want to do all things when on IVs!!!
 
 So, I bit the bullet, and Angi was right. It has been the best decision I have ever made regarding my health....hands down best decision ever!!!
 
 Why I love my port...
 *I don't waffle on whether on not to do IVs. I am ready to get started the minute I get sick which meant less damage to my lungs and feeling better faster.
 *No one knew I was on IVs unless I told them.
 *No more hospitals!!!!! I am germ-phobic and loved that fact.
 *I can do the stick, maintenance and IVs on my own and don't have to depend on other people. I think the independence is so important to feel like we have a little control of our CF... It was like one day I was at my disease's mercy and the next day, I was flipping it the bird!!!
 
 I have a pedi line and it is low profile and tiny. It is in my breast tissue and is COMPLETELY invisible. I am an A cup, but have it on the side and no one can tell.
 I am on 7 years with this port. I have had 3. One lasted 3 years (was in my femoral vein in my groin...don't recommend that), one never worked and was in my arm... I had it a few months. And this last one...she is my best weapon!!
 
 I could go on and on about why it changes your life. But, the deal is, you will never realize it, until you have one. We have enough things to think about without having to burden ourselves with the STRESS of starting IVs... Well, at least for me it was stressful.
 
 There are risks..infection, clotting off, etc, but you have that with a PICC too. If you have a remotely busy life, I can't tell you how much it will help.
 
 Also, a port is not the end. I have been stable for close to ten years (few ups and downs on the way) and that just happens to be how long I have had my port. Before that I was loosing lung function a little a year...
 
 I totally respect any cfers decision either way. But, know this, NO ONE was more against a port than me....my family always gives me crap now when I say I LOVE my port, they remember how adamant I was about NOT GETTING ONE EVER!!! When my first one died, I cried like a baby bc I felt like it was my WEAPON against this insidious disease. This was before I went on the healthy eating, glutathione lifestyle.
 
 It is so weird how it changes your life...
 
 Best of luck on making a decision... If you ever need to talk, pm me...
 hugs.
 mandy

Why do you resist getting a port?

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