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Ready2Dance · Dec 11, 2008

If you get your port placed high enough on the chest, then breast tissue shouldn't interfere. There are other site options too if you don't want it on your chest. I had one in my arm for a while (4 1/2 years) until it finally stopped working.

I never wanted anything long term placed on/in my body, but as things have progressed, I welcome the changes. I got my port, and as much as I complain about it, it's a convenient little guy. I got a g-tube (which I should have done years ago...) and now am able to keep my weight above 100lbs, even when I'm sick. Now I'm looking transplant in the face... and to be honest, I mentally didn't make the decision, my body made it for me.

I would focus on your good days and fight like hell to keep yourself as healthy as possible! At 16, I know I didn't do that... I was too busy trying to be a "normal teen". If your disease progresses, so will your opinion. Best of luck!

Ready2Dance · Dec 11, 2008

If you get your port placed high enough on the chest, then breast tissue shouldn't interfere. There are other site options too if you don't want it on your chest. I had one in my arm for a while (4 1/2 years) until it finally stopped working.

I never wanted anything long term placed on/in my body, but as things have progressed, I welcome the changes. I got my port, and as much as I complain about it, it's a convenient little guy. I got a g-tube (which I should have done years ago...) and now am able to keep my weight above 100lbs, even when I'm sick. Now I'm looking transplant in the face... and to be honest, I mentally didn't make the decision, my body made it for me.

I would focus on your good days and fight like hell to keep yourself as healthy as possible! At 16, I know I didn't do that... I was too busy trying to be a "normal teen". If your disease progresses, so will your opinion. Best of luck!

Ready2Dance · Dec 11, 2008

If you get your port placed high enough on the chest, then breast tissue shouldn't interfere. There are other site options too if you don't want it on your chest. I had one in my arm for a while (4 1/2 years) until it finally stopped working.

I never wanted anything long term placed on/in my body, but as things have progressed, I welcome the changes. I got my port, and as much as I complain about it, it's a convenient little guy. I got a g-tube (which I should have done years ago...) and now am able to keep my weight above 100lbs, even when I'm sick. Now I'm looking transplant in the face... and to be honest, I mentally didn't make the decision, my body made it for me.

I would focus on your good days and fight like hell to keep yourself as healthy as possible! At 16, I know I didn't do that... I was too busy trying to be a "normal teen". If your disease progresses, so will your opinion. Best of luck!

Ready2Dance · Dec 11, 2008

If you get your port placed high enough on the chest, then breast tissue shouldn't interfere. There are other site options too if you don't want it on your chest. I had one in my arm for a while (4 1/2 years) until it finally stopped working.

I never wanted anything long term placed on/in my body, but as things have progressed, I welcome the changes. I got my port, and as much as I complain about it, it's a convenient little guy. I got a g-tube (which I should have done years ago...) and now am able to keep my weight above 100lbs, even when I'm sick. Now I'm looking transplant in the face... and to be honest, I mentally didn't make the decision, my body made it for me.

I would focus on your good days and fight like hell to keep yourself as healthy as possible! At 16, I know I didn't do that... I was too busy trying to be a "normal teen". If your disease progresses, so will your opinion. Best of luck!

Ready2Dance · Dec 11, 2008

If you get your port placed high enough on the chest, then breast tissue shouldn't interfere. There are other site options too if you don't want it on your chest. I had one in my arm for a while (4 1/2 years) until it finally stopped working.
 
 I never wanted anything long term placed on/in my body, but as things have progressed, I welcome the changes. I got my port, and as much as I complain about it, it's a convenient little guy. I got a g-tube (which I should have done years ago...) and now am able to keep my weight above 100lbs, even when I'm sick. Now I'm looking transplant in the face... and to be honest, I mentally didn't make the decision, my body made it for me.
 
 I would focus on your good days and fight like hell to keep yourself as healthy as possible! At 16, I know I didn't do that... I was too busy trying to be a "normal teen". If your disease progresses, so will your opinion. Best of luck!

Transplantmommy · Dec 11, 2008

The chest tubes are rather unpleasant and no...they are not as skinny as like PICC lines and IV's. They actually are a lot like the Vest tubes but I don't think they are nearly as big. I don't quite remember how big the vest tubes are because I stopped using the Vest almost as soon as I got it and went the conventional way of chest PT for a while and then got a percussor.

I did not have a PICC line during my transplant, I had a central line in the neck. I won't do PICC lines because I have problems with them. I also had my port but they can't use the port during the Tx...or at least my team wouldn't. Now that I have had the Tx, the port is gone. Yes I do have scars from it but they are not bad. I don't really care about the scars anyway....I have way more scars on my body than you will ever probably think of having. I have had about 30 procedures/surgeries in my life (I'm 27) and I don't think (and other people don't think) that I am any less beautiful because of them. A lot of people actually think that they are interesting!

Transplantmommy · Dec 11, 2008

The chest tubes are rather unpleasant and no...they are not as skinny as like PICC lines and IV's. They actually are a lot like the Vest tubes but I don't think they are nearly as big. I don't quite remember how big the vest tubes are because I stopped using the Vest almost as soon as I got it and went the conventional way of chest PT for a while and then got a percussor.

I did not have a PICC line during my transplant, I had a central line in the neck. I won't do PICC lines because I have problems with them. I also had my port but they can't use the port during the Tx...or at least my team wouldn't. Now that I have had the Tx, the port is gone. Yes I do have scars from it but they are not bad. I don't really care about the scars anyway....I have way more scars on my body than you will ever probably think of having. I have had about 30 procedures/surgeries in my life (I'm 27) and I don't think (and other people don't think) that I am any less beautiful because of them. A lot of people actually think that they are interesting!

Transplantmommy · Dec 11, 2008

The chest tubes are rather unpleasant and no...they are not as skinny as like PICC lines and IV's. They actually are a lot like the Vest tubes but I don't think they are nearly as big. I don't quite remember how big the vest tubes are because I stopped using the Vest almost as soon as I got it and went the conventional way of chest PT for a while and then got a percussor.

I did not have a PICC line during my transplant, I had a central line in the neck. I won't do PICC lines because I have problems with them. I also had my port but they can't use the port during the Tx...or at least my team wouldn't. Now that I have had the Tx, the port is gone. Yes I do have scars from it but they are not bad. I don't really care about the scars anyway....I have way more scars on my body than you will ever probably think of having. I have had about 30 procedures/surgeries in my life (I'm 27) and I don't think (and other people don't think) that I am any less beautiful because of them. A lot of people actually think that they are interesting!

Transplantmommy · Dec 11, 2008

The chest tubes are rather unpleasant and no...they are not as skinny as like PICC lines and IV's. They actually are a lot like the Vest tubes but I don't think they are nearly as big. I don't quite remember how big the vest tubes are because I stopped using the Vest almost as soon as I got it and went the conventional way of chest PT for a while and then got a percussor.

I did not have a PICC line during my transplant, I had a central line in the neck. I won't do PICC lines because I have problems with them. I also had my port but they can't use the port during the Tx...or at least my team wouldn't. Now that I have had the Tx, the port is gone. Yes I do have scars from it but they are not bad. I don't really care about the scars anyway....I have way more scars on my body than you will ever probably think of having. I have had about 30 procedures/surgeries in my life (I'm 27) and I don't think (and other people don't think) that I am any less beautiful because of them. A lot of people actually think that they are interesting!

Transplantmommy · Dec 11, 2008

The chest tubes are rather unpleasant and no...they are not as skinny as like PICC lines and IV's. They actually are a lot like the Vest tubes but I don't think they are nearly as big. I don't quite remember how big the vest tubes are because I stopped using the Vest almost as soon as I got it and went the conventional way of chest PT for a while and then got a percussor.
 
 I did not have a PICC line during my transplant, I had a central line in the neck. I won't do PICC lines because I have problems with them. I also had my port but they can't use the port during the Tx...or at least my team wouldn't. Now that I have had the Tx, the port is gone. Yes I do have scars from it but they are not bad. I don't really care about the scars anyway....I have way more scars on my body than you will ever probably think of having. I have had about 30 procedures/surgeries in my life (I'm 27) and I don't think (and other people don't think) that I am any less beautiful because of them. A lot of people actually think that they are interesting!

summer732 · Dec 11, 2008

Alyssa,

It is great that you are information gathering. At your age, I was doing the exact same things. Asking questions and forming opinions about the whole process.

I'm confused...are you getting a port? I didn't have a port before or after the tx. The only reason they switched me to a Picc Line after my tx was so that I could go home and finish the antibiotics. I was only in the hospital for 9 days after my tx. They wanted to get me out of there, get me away from the risk of infection and where I could get some solid rest/recovery.

As far as the scars, they used glue on me and they look great. You can barely even see mine. I'll try to post a picture at some point of my feeding tube scar, the chest tube scars and the actual incision scar. You would be suprised.

summer732 · Dec 11, 2008

Alyssa,

It is great that you are information gathering. At your age, I was doing the exact same things. Asking questions and forming opinions about the whole process.

I'm confused...are you getting a port? I didn't have a port before or after the tx. The only reason they switched me to a Picc Line after my tx was so that I could go home and finish the antibiotics. I was only in the hospital for 9 days after my tx. They wanted to get me out of there, get me away from the risk of infection and where I could get some solid rest/recovery.

As far as the scars, they used glue on me and they look great. You can barely even see mine. I'll try to post a picture at some point of my feeding tube scar, the chest tube scars and the actual incision scar. You would be suprised.

summer732 · Dec 11, 2008

Alyssa,

It is great that you are information gathering. At your age, I was doing the exact same things. Asking questions and forming opinions about the whole process.

I'm confused...are you getting a port? I didn't have a port before or after the tx. The only reason they switched me to a Picc Line after my tx was so that I could go home and finish the antibiotics. I was only in the hospital for 9 days after my tx. They wanted to get me out of there, get me away from the risk of infection and where I could get some solid rest/recovery.

As far as the scars, they used glue on me and they look great. You can barely even see mine. I'll try to post a picture at some point of my feeding tube scar, the chest tube scars and the actual incision scar. You would be suprised.

summer732 · Dec 11, 2008

Alyssa,

It is great that you are information gathering. At your age, I was doing the exact same things. Asking questions and forming opinions about the whole process.

I'm confused...are you getting a port? I didn't have a port before or after the tx. The only reason they switched me to a Picc Line after my tx was so that I could go home and finish the antibiotics. I was only in the hospital for 9 days after my tx. They wanted to get me out of there, get me away from the risk of infection and where I could get some solid rest/recovery.

As far as the scars, they used glue on me and they look great. You can barely even see mine. I'll try to post a picture at some point of my feeding tube scar, the chest tube scars and the actual incision scar. You would be suprised.

summer732 · Dec 11, 2008

Alyssa,
 
 It is great that you are information gathering. At your age, I was doing the exact same things. Asking questions and forming opinions about the whole process.
 
 I'm confused...are you getting a port? I didn't have a port before or after the tx. The only reason they switched me to a Picc Line after my tx was so that I could go home and finish the antibiotics. I was only in the hospital for 9 days after my tx. They wanted to get me out of there, get me away from the risk of infection and where I could get some solid rest/recovery.
 
 As far as the scars, they used glue on me and they look great. You can barely even see mine. I'll try to post a picture at some point of my feeding tube scar, the chest tube scars and the actual incision scar. You would be suprised.

PedsNP2007 · Dec 11, 2008

Ahh... that type of growing... Well, my port, like the other Jen has, is high enough on my chest that it doesn't even enter the boob area. It's right under my left clavicle.. It does stick out so people do know that it exists. It's the best thing I ever got. Even only going into the hospital 2x/year, I use it almost every month (not only to flush it), but if I have labs drawn from different clinics I have to go to. I can also do home ivs and work at the same time without many people knowing.

Picc lines were ok for only so long. My left arm was scarred after 1 picc line and the veins spasmed with additional attempts. My right arm did ok for 2 piccs, then I went to a right arm port that lasted 3 years or so...

My chest port has been with me for over 8 years and is still going strong. I had a port infection that went systemic, but we were able to treat me with antibiotics. The port was cleared and I didn't have to get it replaced. Phew.

Good luck staying as healthy as possible. I am lucky to have mild-mod cf... I nearly died during my first hospitalization at 18 years old (hemoptysis requiring embolizations)... I bounced back to what my previous lung function was and 12 years later, there is a steady, but slow decline in my lung function. Just know that once you lose it, it can be very hard if not impossible to regain.

Jenn
30 yo cf

PedsNP2007 · Dec 11, 2008

Ahh... that type of growing... Well, my port, like the other Jen has, is high enough on my chest that it doesn't even enter the boob area. It's right under my left clavicle.. It does stick out so people do know that it exists. It's the best thing I ever got. Even only going into the hospital 2x/year, I use it almost every month (not only to flush it), but if I have labs drawn from different clinics I have to go to. I can also do home ivs and work at the same time without many people knowing.

Picc lines were ok for only so long. My left arm was scarred after 1 picc line and the veins spasmed with additional attempts. My right arm did ok for 2 piccs, then I went to a right arm port that lasted 3 years or so...

My chest port has been with me for over 8 years and is still going strong. I had a port infection that went systemic, but we were able to treat me with antibiotics. The port was cleared and I didn't have to get it replaced. Phew.

Good luck staying as healthy as possible. I am lucky to have mild-mod cf... I nearly died during my first hospitalization at 18 years old (hemoptysis requiring embolizations)... I bounced back to what my previous lung function was and 12 years later, there is a steady, but slow decline in my lung function. Just know that once you lose it, it can be very hard if not impossible to regain.

Jenn
30 yo cf

PedsNP2007 · Dec 11, 2008

Ahh... that type of growing... Well, my port, like the other Jen has, is high enough on my chest that it doesn't even enter the boob area. It's right under my left clavicle.. It does stick out so people do know that it exists. It's the best thing I ever got. Even only going into the hospital 2x/year, I use it almost every month (not only to flush it), but if I have labs drawn from different clinics I have to go to. I can also do home ivs and work at the same time without many people knowing.

Picc lines were ok for only so long. My left arm was scarred after 1 picc line and the veins spasmed with additional attempts. My right arm did ok for 2 piccs, then I went to a right arm port that lasted 3 years or so...

My chest port has been with me for over 8 years and is still going strong. I had a port infection that went systemic, but we were able to treat me with antibiotics. The port was cleared and I didn't have to get it replaced. Phew.

Good luck staying as healthy as possible. I am lucky to have mild-mod cf... I nearly died during my first hospitalization at 18 years old (hemoptysis requiring embolizations)... I bounced back to what my previous lung function was and 12 years later, there is a steady, but slow decline in my lung function. Just know that once you lose it, it can be very hard if not impossible to regain.

Jenn
30 yo cf

PedsNP2007 · Dec 11, 2008

Ahh... that type of growing... Well, my port, like the other Jen has, is high enough on my chest that it doesn't even enter the boob area. It's right under my left clavicle.. It does stick out so people do know that it exists. It's the best thing I ever got. Even only going into the hospital 2x/year, I use it almost every month (not only to flush it), but if I have labs drawn from different clinics I have to go to. I can also do home ivs and work at the same time without many people knowing.

Picc lines were ok for only so long. My left arm was scarred after 1 picc line and the veins spasmed with additional attempts. My right arm did ok for 2 piccs, then I went to a right arm port that lasted 3 years or so...

My chest port has been with me for over 8 years and is still going strong. I had a port infection that went systemic, but we were able to treat me with antibiotics. The port was cleared and I didn't have to get it replaced. Phew.

Good luck staying as healthy as possible. I am lucky to have mild-mod cf... I nearly died during my first hospitalization at 18 years old (hemoptysis requiring embolizations)... I bounced back to what my previous lung function was and 12 years later, there is a steady, but slow decline in my lung function. Just know that once you lose it, it can be very hard if not impossible to regain.

Jenn
30 yo cf

PedsNP2007 · Dec 11, 2008

Ahh... that type of growing... Well, my port, like the other Jen has, is high enough on my chest that it doesn't even enter the boob area. It's right under my left clavicle.. It does stick out so people do know that it exists. It's the best thing I ever got. Even only going into the hospital 2x/year, I use it almost every month (not only to flush it), but if I have labs drawn from different clinics I have to go to. I can also do home ivs and work at the same time without many people knowing.
 
 Picc lines were ok for only so long. My left arm was scarred after 1 picc line and the veins spasmed with additional attempts. My right arm did ok for 2 piccs, then I went to a right arm port that lasted 3 years or so...
 
 My chest port has been with me for over 8 years and is still going strong. I had a port infection that went systemic, but we were able to treat me with antibiotics. The port was cleared and I didn't have to get it replaced. Phew.
 
 Good luck staying as healthy as possible. I am lucky to have mild-mod cf... I nearly died during my first hospitalization at 18 years old (hemoptysis requiring embolizations)... I bounced back to what my previous lung function was and 12 years later, there is a steady, but slow decline in my lung function. Just know that once you lose it, it can be very hard if not impossible to regain.
 
 Jenn
 30 yo cf

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