Port Information for family members...

[MCGrad2006]

So after a very exciting (?) weekend spent in the ER because of a clogged PICC line, I finally brought up the topic of a port with my doctor.  (long story short...the PICC was in the wrong place, they had to take it out...and now I am missing my last week of Vanco).  Doc was totally on board with port idea.  I think that he was waiting for me to bring it up, but he seems very happy that I am considering it.  I am 27 years old and have had MANY PICCs with the last few causing some issues.  I don't like going through the PICC procedure, it is very hard on me and very traumatic.<div><br></div><div>My family is very much against this step.  It upsets me because it is something I was very excited about and would be happy to finally have something that is more convenient.  It just seems like it would work very well for me.  </div><div><br></div><div>My cousin had a port for cancer treatment and he got an infection in it, so opted to have it removed and use a PICC for 6 straight months for his chemo.  My mom can't get that out of her head and thinks that if/when I get a port I am a "sicky."  She didn't say as much but that is how I feel by what she is not saying.  Know what I mean?</div><div><br></div><div>What can I say to make her more comfortable?  Is there somewhere I can send her online to give her more info?  How much does your port show?  I am quite bony in the chest, will it stick out?  I know I am 27 (and married), but I want her to be ok with this.  I feel like she will be angry with me...As a parent, what helped you to accept that your child needed a port?</div>

 

[MCGrad2006]

So after a very exciting (?) weekend spent in the ER because of a clogged PICC line, I finally brought up the topic of a port with my doctor. (long story short...the PICC was in the wrong place, they had to take it out...and now I am missing my last week of Vanco). Doc was totally on board with port idea. I think that he was waiting for me to bring it up, but he seems very happy that I am considering it. I am 27 years old and have had MANY PICCs with the last few causing some issues. I don't like going through the PICC procedure, it is very hard on me and very traumatic.<br>My family is very much against this step. It upsets me because it is something I was very excited about and would be happy to finally have something that is more convenient. It just seems like it would work very well for me. <br>My cousin had a port for cancer treatment and he got an infection in it, so opted to have it removed and use a PICC for 6 straight months for his chemo. My mom can't get that out of her head and thinks that if/when I get a port I am a "sicky." She didn't say as much but that is how I feel by what she is not saying. Know what I mean?<br>What can I say to make her more comfortable? Is there somewhere I can send her online to give her more info? How much does your port show? I am quite bony in the chest, will it stick out? I know I am 27 (and married), but I want her to be ok with this. I feel like she will be angry with me...As a parent, what helped you to accept that your child needed a port?

 

[MCGrad2006]

So after a very exciting (?) weekend spent in the ER because of a clogged PICC line, I finally brought up the topic of a port with my doctor. (long story short...the PICC was in the wrong place, they had to take it out...and now I am missing my last week of Vanco). Doc was totally on board with port idea. I think that he was waiting for me to bring it up, but he seems very happy that I am considering it. I am 27 years old and have had MANY PICCs with the last few causing some issues. I don't like going through the PICC procedure, it is very hard on me and very traumatic.<br>My family is very much against this step. It upsets me because it is something I was very excited about and would be happy to finally have something that is more convenient. It just seems like it would work very well for me. <br>My cousin had a port for cancer treatment and he got an infection in it, so opted to have it removed and use a PICC for 6 straight months for his chemo. My mom can't get that out of her head and thinks that if/when I get a port I am a "sicky." She didn't say as much but that is how I feel by what she is not saying. Know what I mean?<br>What can I say to make her more comfortable? Is there somewhere I can send her online to give her more info? How much does your port show? I am quite bony in the chest, will it stick out? I know I am 27 (and married), but I want her to be ok with this. I feel like she will be angry with me...As a parent, what helped you to accept that your child needed a port?

 

[ramseyps]

We realized our daughter needed a port when the PICC team could not place a line in over 2 hours of trying. She had had several PICCS and her veins were scarred. She had a port placed under her left upper arm. This worked well with vest treatments and there were no privacy issues because it was in her arm and not noticeable. Showering was quite easy as they make a PICC cover that slips up the arm. A draw back for my daughter was not being able to always draw blood back. This was explained as the valves in the viens not cooperating--it was flushing fine. She had that port for 4 years when it started to leak. The surgeon tried to place another arm port but was unsuccessful with the vein valves. She is 14 years old and now has it in her chest. It is very easy to draw blood from. I think she has lost some privacy in the fact to access it, you have to pull her shirt down to her bra area. And the port shows when accessed when she is wearing anything but a high neck t-shirt. When not accessed, you cannot tell it is there at all. I don't know why we waited so long to get a port for her. It has reduced her stress considerably! I flush it once a month and it has been very easy to access and maintain. Getting PICC lines were always a stressful ordeal and it was quite painful having those stitches holding it in place especially when the dressing was changed.

I think we held off so long because we thought of it as a "permanent" thing but looking back both my husband and I would have gotten her a port much much earlier. She ususally gets IV's about twice a year. Hope this helps you in deciding!

 

[ramseyps]

We realized our daughter needed a port when the PICC team could not place a line in over 2 hours of trying. She had had several PICCS and her veins were scarred. She had a port placed under her left upper arm. This worked well with vest treatments and there were no privacy issues because it was in her arm and not noticeable. Showering was quite easy as they make a PICC cover that slips up the arm. A draw back for my daughter was not being able to always draw blood back. This was explained as the valves in the viens not cooperating--it was flushing fine. She had that port for 4 years when it started to leak. The surgeon tried to place another arm port but was unsuccessful with the vein valves. She is 14 years old and now has it in her chest. It is very easy to draw blood from. I think she has lost some privacy in the fact to access it, you have to pull her shirt down to her bra area. And the port shows when accessed when she is wearing anything but a high neck t-shirt. When not accessed, you cannot tell it is there at all. I don't know why we waited so long to get a port for her. It has reduced her stress considerably! I flush it once a month and it has been very easy to access and maintain. Getting PICC lines were always a stressful ordeal and it was quite painful having those stitches holding it in place especially when the dressing was changed.

I think we held off so long because we thought of it as a "permanent" thing but looking back both my husband and I would have gotten her a port much much earlier. She ususally gets IV's about twice a year. Hope this helps you in deciding!

 

[ramseyps]

We realized our daughter needed a port when the PICC team could not place a line in over 2 hours of trying. She had had several PICCS and her veins were scarred. She had a port placed under her left upper arm. This worked well with vest treatments and there were no privacy issues because it was in her arm and not noticeable. Showering was quite easy as they make a PICC cover that slips up the arm. A draw back for my daughter was not being able to always draw blood back. This was explained as the valves in the viens not cooperating--it was flushing fine. She had that port for 4 years when it started to leak. The surgeon tried to place another arm port but was unsuccessful with the vein valves. She is 14 years old and now has it in her chest. It is very easy to draw blood from. I think she has lost some privacy in the fact to access it, you have to pull her shirt down to her bra area. And the port shows when accessed when she is wearing anything but a high neck t-shirt. When not accessed, you cannot tell it is there at all. I don't know why we waited so long to get a port for her. It has reduced her stress considerably! I flush it once a month and it has been very easy to access and maintain. Getting PICC lines were always a stressful ordeal and it was quite painful having those stitches holding it in place especially when the dressing was changed.
<br />
<br />I think we held off so long because we thought of it as a "permanent" thing but looking back both my husband and I would have gotten her a port much much earlier. She ususally gets IV's about twice a year. Hope this helps you in deciding!

 

[CJPsMom]

That's really too bad that your Mom isn't okay with this. I have a baby with CF and if there is anything at all that will make things easier for him, I'm all for it. It's sometimes traumatic for me (g-tube insertion) but it makes life better for him.

I pray that your Mom will soon see that this is for YOUR benefit.

If she doesn't, I strongly encourage you to do what's best and what's right for you. You said that you're married and I'm sure the process for the PICC line (and the weekend in the ER) puts a good amount of stress on your husband as well. I'd also say that you're married - what does your husband think? At this point in your life, that should be more important than what your Mom has to say about it.

 

[CJPsMom]

That's really too bad that your Mom isn't okay with this. I have a baby with CF and if there is anything at all that will make things easier for him, I'm all for it. It's sometimes traumatic for me (g-tube insertion) but it makes life better for him.

I pray that your Mom will soon see that this is for YOUR benefit.

If she doesn't, I strongly encourage you to do what's best and what's right for you. You said that you're married and I'm sure the process for the PICC line (and the weekend in the ER) puts a good amount of stress on your husband as well. I'd also say that you're married - what does your husband think? At this point in your life, that should be more important than what your Mom has to say about it.

 

[CJPsMom]

That's really too bad that your Mom isn't okay with this. I have a baby with CF and if there is anything at all that will make things easier for him, I'm all for it. It's sometimes traumatic for me (g-tube insertion) but it makes life better for him.
<br />
<br />I pray that your Mom will soon see that this is for YOUR benefit.
<br />
<br />If she doesn't, I strongly encourage you to do what's best and what's right for you. You said that you're married and I'm sure the process for the PICC line (and the weekend in the ER) puts a good amount of stress on your husband as well. I'd also say that you're married - what does your husband think? At this point in your life, that should be more important than what your Mom has to say about it.
<br />

 

[musclemania70]

Your mom needs to support you and your decision. Its tough enough that you have to be the one to have the item inserted in your body, without people standing by and making you feel even worse about it than you already do. I have had mine for almost 5 years. never an issue and I love it. I would do it again in a heartbeat. My family supports my decisions no matter what and I would be thoroughy disappointed in my family if I did not have 100% for whatever decisions I make since I do what is best for me my health. Not to sound rude, but your mom needs to grasp the fact that you have a serious illness that needs serious care. Part of this care may mean getting a port in order to make things easier on YOU in the long run. Stay strong. If you doctor is ok with it, your family should support you without question.

 

[musclemania70]

Your mom needs to support you and your decision. Its tough enough that you have to be the one to have the item inserted in your body, without people standing by and making you feel even worse about itthan you already do. I have had mine for almost 5 years. never an issue and I love it. I would do it again in a heartbeat. My family supports my decisions no matter what and I would be thoroughy disappointed in my family if I did not have 100% for whatever decisions I make since I do what is best for me my health. Not to sound rude, but your mom needs to grasp the fact that you have a serious illness that needs serious care. Part of this care may mean getting a port in order to make things easier on YOU in the long run. Stay strong. If you doctor is ok with it, your family should support you without question.

 

[musclemania70]

Your mom needs to support you and your decision. Its tough enough that you have to be the one to have the item inserted in your body, without people standing by and making you feel even worse about itthan you already do. <BR><BR>I have had mine for almost 5 years. never an issue and I love it. I would do it again in a heartbeat. My family supports my decisions no matter what and I would be thoroughy disappointed in my family if I did not have 100% for whatever decisions I make since I do what is best for me my health. <BR><BR>Not to sound rude, but your mom needs to grasp the fact that you have a serious illness that needs serious care. <BR>Part of this care may mean getting a port in order to make things easier on YOU in the long run. <BR><BR>Stay strong. If you doctor is ok with it, your family should support you without question.

 

[just1more]

Caitlin, obviously a port is seen by many as a big step, and I'm sure that plays a part in the families concern.<br><br>As well, they probably don't understand what it entails, and having had a family member with a bad experience doesn't help things.<br><br>As for it being a big step, it is....but it also has some great benefits; I have 2 sons with one.  Both my CFer and also I have a son with hemophilia that has had one for years.<br><br>As far as "selling" your mom:<br><br>1) A port is always there, which means if you need IV's there is no need for a PICC placement, and often no need to be hospitalized at all.<br><br>2) You can shower, swim, play sports, LIVE all with a port.  If you are currently doing IV's and want to go swimming, you deaccess--go swimming--reaccess before the next infusion.  In between you are 100% normal.<br><br>3) Ports, properly cared for can last for years and are a great time saver.  In addition, over time you have almost no pain accessing as the skin directly over the port will 'toughen'.<br><br>4) As far as the infection risk, the biggest change is that when you access (first insert needle) or remove it you have to be sterile (not just clean).  You or the nurse has to wear a mask & sterile surgical gloves.  Done properly you are fine.  Done sloppy you risk an infection.  Dilligence and learning to either self-access (or teach your hubby to) will eliminate most of this risk.  If my sons need access for some reason, we will access them at home before going to the hospital.<br><br>5) If you are skinny, then it will show 'some'; but a lot depends on placement.  They are about the size of a nickel and many women have them placed where the top of the breast meets the chest so it settles into the tissue and hides better than the normal location which is just below the collar bone.  Just discuss with the surgeon and they can put it anywhere you want basically.<br><br>Good luck!<br>

 

[just1more]

Caitlin, obviously a port is seen by many as a big step, and I'm sure that plays a part in the families concern.<br><br>As well, they probably don't understand what it entails, and having had a family member with a bad experience doesn't help things.<br><br>As for it being a big step, it is....but it also has some great benefits; I have 2 sons with one. Both my CFer and also I have a son with hemophilia that has had one for years.<br><br>As far as "selling" your mom:<br><br>1) A port is always there, which means if you need IV's there is no need for a PICC placement, and often no need to be hospitalized at all.<br><br>2) You can shower, swim, play sports, LIVE all with a port. If you are currently doing IV's and want to go swimming, you deaccess--go swimming--reaccess before the next infusion. In between you are 100% normal.<br><br>3) Ports, properly cared for can last for years and are a great time saver. In addition, over time you have almost no pain accessing as the skin directly over the port will 'toughen'.<br><br>4) As far as the infection risk, the biggest change is that when you access (first insert needle) or remove it you have to be sterile (not just clean). You or the nurse has to wear a mask & sterile surgical gloves. Done properly you are fine. Done sloppy you risk an infection. Dilligence and learning to either self-access (or teach your hubby to) will eliminate most of this risk. If my sons need access for some reason, we will access them at home before going to the hospital.<br><br>5) If you are skinny, then it will show 'some'; but a lot depends on placement. They are about the size of a nickel and many women have them placed where the top of the breast meets the chest so it settles into the tissue and hides better than the normal location which is just below the collar bone. Just discuss with the surgeon and they can put it anywhere you want basically.<br><br>Good luck!<br>

 

[just1more]

Caitlin, obviously a port is seen by many as a big step, and I'm sure that plays a part in the families concern.<br><br>As well, they probably don't understand what it entails, and having had a family member with a bad experience doesn't help things.<br><br>As for it being a big step, it is....but it also has some great benefits; I have 2 sons with one. Both my CFer and also I have a son with hemophilia that has had one for years.<br><br>As far as "selling" your mom:<br><br>1) A port is always there, which means if you need IV's there is no need for a PICC placement, and often no need to be hospitalized at all.<br><br>2) You can shower, swim, play sports, LIVE all with a port. If you are currently doing IV's and want to go swimming, you deaccess--go swimming--reaccess before the next infusion. In between you are 100% normal.<br><br>3) Ports, properly cared for can last for years and are a great time saver. In addition, over time you have almost no pain accessing as the skin directly over the port will 'toughen'.<br><br>4) As far as the infection risk, the biggest change is that when you access (first insert needle) or remove it you have to be sterile (not just clean). You or the nurse has to wear a mask & sterile surgical gloves. Done properly you are fine. Done sloppy you risk an infection. Dilligence and learning to either self-access (or teach your hubby to) will eliminate most of this risk. If my sons need access for some reason, we will access them at home before going to the hospital.<br><br>5) If you are skinny, then it will show 'some'; but a lot depends on placement. They are about the size of a nickel and many women have them placed where the top of the breast meets the chest so it settles into the tissue and hides better than the normal location which is just below the collar bone. Just discuss with the surgeon and they can put it anywhere you want basically.<br><br>Good luck!<br>

 

[JustDucky]

Caitlin, my mom was almost like yours...my grandmother had a port for chemo and all she could think that I was on the decline and associated ports with the very sick. I told her that not just cancer patients use ports, such as hemophiliacs or anyone who requires multiple IV's for chronic illnesses. Doesn't mean that they are "sick" or "dying".
Having a port for nearly 6 years has been a godsend as I have needed IV's at least 4 times a year and for 3 wks or more stretches. PICC's gave me such anxiety as I was a fairly hard stick too...I dreaded the whole thing. The port decision was almost a very easy one for me, the thought of no more PICC teams sold me to be honest.
Once I got the port and my mom saw that it did improve my quality of life because IV's could be started immediately and I didn't have to go through PICC lines and the infections I got from them (my skin reacted to the tegaderm, peeled and bubbled...bacteria loved that and so I would get line infections), she relaxed and is happy that the port was placed.
Tom makes excellent points....I can't add to it. Recovery is quick from a port placement with some soreness. After awhile, accessing it doesn't even hurt me because of the scar tissue from repeated sticks over it. Even when it was new, the actual accessing of my port was less painful than an IV stick.
Good luck.
Jenn 39 w/CF

 

[JustDucky]

Caitlin, my mom was almost like yours...my grandmother had a port for chemo and all she could think that I was on the decline and associated ports with the very sick. I told her that not just cancer patients use ports, such as hemophiliacs or anyone who requires multiple IV's for chronic illnesses. Doesn't mean that they are "sick" or "dying".
Having a port for nearly 6 years has been a godsend as I have needed IV's at least 4 times a year and for 3 wks or more stretches. PICC's gave me such anxiety as I was a fairly hard stick too...I dreaded the whole thing. The port decision was almost a very easy one for me, the thought of no more PICC teams sold me to be honest.
Once I got the port and my mom saw that it did improve my quality of life because IV's could be started immediately and I didn't have to go through PICC lines and the infections I got from them (my skin reacted to the tegaderm, peeled and bubbled...bacteria loved that and so I would get line infections), she relaxed and is happy that the port was placed.
Tom makes excellent points....I can't add to it. Recovery is quick from a port placement with some soreness. After awhile, accessing it doesn't even hurt me because of the scar tissue from repeated sticks over it. Even when it was new, the actual accessing of my port was less painful than an IV stick.
Good luck.
Jenn 39 w/CF

 

[JustDucky]

Caitlin, my mom was almost like yours...my grandmother had a port for chemo and all she could think that I was on the decline and associated ports with the very sick. I told her that not just cancer patients use ports, such as hemophiliacs or anyone who requires multiple IV's for chronic illnesses. Doesn't mean that they are "sick" or "dying".
<br />Having a port for nearly 6 years has been a godsend as I have needed IV's at least 4 times a year and for 3 wks or more stretches. PICC's gave me such anxiety as I was a fairly hard stick too...I dreaded the whole thing. The port decision was almost a very easy one for me, the thought of no more PICC teams sold me to be honest.
<br />Once I got the port and my mom saw that it did improve my quality of life because IV's could be started immediately and I didn't have to go through PICC lines and the infections I got from them (my skin reacted to the tegaderm, peeled and bubbled...bacteria loved that and so I would get line infections), she relaxed and is happy that the port was placed.
<br />Tom makes excellent points....I can't add to it. Recovery is quick from a port placement with some soreness. After awhile, accessing it doesn't even hurt me because of the scar tissue from repeated sticks over it. Even when it was new, the actual accessing of my port was less painful than an IV stick.
<br />Good luck.
<br />Jenn 39 w/CF

 

[Havoc]

Perhaps this post will seem a bit callous. I have always been a fiercely independent person and I do what I think is right regardless of what others think or say. I realize that a lot of people want to appease family members, but you are 27 years old. If you mum doesn't approve, well then tough luck. We are talking about you and your health, which has nothing to do with you mum. Do what you and your doctor feel is the best option for you. Your mum will either accept it or not. My thinking is that after all is said and done, she will see the error in her knee-jerk reaction.

 

[Havoc]

Perhaps this post will seem a bit callous. I have always been a fiercely independent person and I do what I think is right regardless of what others think or say. I realize that a lot of people want to appease family members, but you are 27 years old. If you mum doesn't approve, well then tough luck. We are talking about you and your health, which has nothing to do with you mum. Do what you and your doctor feel is the best option for you. Your mum will either accept it or not. My thinking is that after all is said and done, she will see the error in her knee-jerk reaction.