port questions

N

nicolemarie2010

New member
Hi!
I'm looking in to getting a port cause i am tired of having to spend at least an hour to try to get a picc in and then having it dangling off of my arm for another 3 weeks. So i have been doing research online and calling my cf center and i cant find all the answers so i was hoping that yall would know.....
-When you get a port placed, can you use it right away or do you have to wait?
-When you are getting IV antibiotics for weeks at a time, do you leave it accessed the whole time?
-What is the best way to shower with a port accessed?
-Does it hurt really bad? or just sore?

If there is anything that you would like to share with me about ports, I would love to hear everything.
Thanks
Nicole
 
N

nicolemarie2010

New member
Hi!
I'm looking in to getting a port cause i am tired of having to spend at least an hour to try to get a picc in and then having it dangling off of my arm for another 3 weeks. So i have been doing research online and calling my cf center and i cant find all the answers so i was hoping that yall would know.....
-When you get a port placed, can you use it right away or do you have to wait?
-When you are getting IV antibiotics for weeks at a time, do you leave it accessed the whole time?
-What is the best way to shower with a port accessed?
-Does it hurt really bad? or just sore?

If there is anything that you would like to share with me about ports, I would love to hear everything.
Thanks
Nicole
 
N

nicolemarie2010

New member
Hi!
<br />I'm looking in to getting a port cause i am tired of having to spend at least an hour to try to get a picc in and then having it dangling off of my arm for another 3 weeks. So i have been doing research online and calling my cf center and i cant find all the answers so i was hoping that yall would know.....
<br />-When you get a port placed, can you use it right away or do you have to wait?
<br />-When you are getting IV antibiotics for weeks at a time, do you leave it accessed the whole time?
<br />-What is the best way to shower with a port accessed?
<br />-Does it hurt really bad? or just sore?
<br />
<br />If there is anything that you would like to share with me about ports, I would love to hear everything.
<br />Thanks
<br />Nicole
 
K

Keepercjr

Guest
Nicole

I haven't used my port for IVs meds (other than for a few procedures and when I had surgery last month) in 6 years. My port is 9.5 years old. But to answer your questions:
-You CAN use your port right away.

-You have to replace the needle every 5 days. If you are doing home IVs you can have the nurse do it or you can have a family member trained to access it. I got mine when I was 20 and the home care nurse trained my then boyfriend (now husband) to do it.

-When the port is accessed it is covered by tagederm which is waterproof. I showered like normal.

-Since it was almost 10 years ago that I had my surgery, i don't remember much about the pain. I was definitely sore for a while and it felt like a weight was pulling on the surgical site. But once you heal it shouldn't hurt at all.

A TIP - Use EMLA cream (or a lidocaine cream) that you get prescription from your doctor and leave it on for 2-3 hours before you get your port accessed. You won't even feel it. I don't know if you use it now for needle pokes but I found that accessing a port hurts a lot more than an IV in your arm.

Most surgeons say to flush your port every month... I don't anymore but that seems to be the general protocol. Again, we had my husband trained to do it so we didn't have to schedule and wait around for a nurse. OH and I was told by the nurses at my local (non CF Center) hospital that they don't flush with heparin anymore, just saline.
 
K

Keepercjr

Guest
Nicole

I haven't used my port for IVs meds (other than for a few procedures and when I had surgery last month) in 6 years. My port is 9.5 years old. But to answer your questions:
-You CAN use your port right away.

-You have to replace the needle every 5 days. If you are doing home IVs you can have the nurse do it or you can have a family member trained to access it. I got mine when I was 20 and the home care nurse trained my then boyfriend (now husband) to do it.

-When the port is accessed it is covered by tagederm which is waterproof. I showered like normal.

-Since it was almost 10 years ago that I had my surgery, i don't remember much about the pain. I was definitely sore for a while and it felt like a weight was pulling on the surgical site. But once you heal it shouldn't hurt at all.

A TIP - Use EMLA cream (or a lidocaine cream) that you get prescription from your doctor and leave it on for 2-3 hours before you get your port accessed. You won't even feel it. I don't know if you use it now for needle pokes but I found that accessing a port hurts a lot more than an IV in your arm.

Most surgeons say to flush your port every month... I don't anymore but that seems to be the general protocol. Again, we had my husband trained to do it so we didn't have to schedule and wait around for a nurse. OH and I was told by the nurses at my local (non CF Center) hospital that they don't flush with heparin anymore, just saline.
 
K

Keepercjr

Guest
Nicole
<br />
<br />I haven't used my port for IVs meds (other than for a few procedures and when I had surgery last month) in 6 years. My port is 9.5 years old. But to answer your questions:
<br />-You CAN use your port right away.
<br />
<br />-You have to replace the needle every 5 days. If you are doing home IVs you can have the nurse do it or you can have a family member trained to access it. I got mine when I was 20 and the home care nurse trained my then boyfriend (now husband) to do it.
<br />
<br />-When the port is accessed it is covered by tagederm which is waterproof. I showered like normal.
<br />
<br />-Since it was almost 10 years ago that I had my surgery, i don't remember much about the pain. I was definitely sore for a while and it felt like a weight was pulling on the surgical site. But once you heal it shouldn't hurt at all.
<br />
<br />A TIP - Use EMLA cream (or a lidocaine cream) that you get prescription from your doctor and leave it on for 2-3 hours before you get your port accessed. You won't even feel it. I don't know if you use it now for needle pokes but I found that accessing a port hurts a lot more than an IV in your arm.
<br />
<br />Most surgeons say to flush your port every month... I don't anymore but that seems to be the general protocol. Again, we had my husband trained to do it so we didn't have to schedule and wait around for a nurse. OH and I was told by the nurses at my local (non CF Center) hospital that they don't flush with heparin anymore, just saline.
 
F

falbie13

New member
Hey Nicole,
I have had two ports. The first one was accessed, I believe a few days after it was placed. The second one they had to wait over a week because it was so sore they couldnt get near it, even with morphine on board. I should mention though, that they put my second port in the same place as the first and the area had been yanked on to get the old one out. As for showering, I used a water proof "aquaderm" which has sticky edging that keeps the dressing on. Ask your home care company if they have it, it works wonderfully. As for getting it accessed, sometimes it hurt, sometimes it didnt, it was a crap shoot for me. I agree about the EMLA if you can get it, use it. My center had me change the needle every 7 days and then flush it once a month if it wasnt being used. I needed heparin because my lines would clot easily, but it is up to your center.
I hope this helps. If you have any more questions, please feel free to ask.
 
F

falbie13

New member
Hey Nicole,
I have had two ports. The first one was accessed, I believe a few days after it was placed. The second one they had to wait over a week because it was so sore they couldnt get near it, even with morphine on board. I should mention though, that they put my second port in the same place as the first and the area had been yanked on to get the old one out. As for showering, I used a water proof "aquaderm" which has sticky edging that keeps the dressing on. Ask your home care company if they have it, it works wonderfully. As for getting it accessed, sometimes it hurt, sometimes it didnt, it was a crap shoot for me. I agree about the EMLA if you can get it, use it. My center had me change the needle every 7 days and then flush it once a month if it wasnt being used. I needed heparin because my lines would clot easily, but it is up to your center.
I hope this helps. If you have any more questions, please feel free to ask.
 
F

falbie13

New member
Hey Nicole,
<br />I have had two ports. The first one was accessed, I believe a few days after it was placed. The second one they had to wait over a week because it was so sore they couldnt get near it, even with morphine on board. I should mention though, that they put my second port in the same place as the first and the area had been yanked on to get the old one out. As for showering, I used a water proof "aquaderm" which has sticky edging that keeps the dressing on. Ask your home care company if they have it, it works wonderfully. As for getting it accessed, sometimes it hurt, sometimes it didnt, it was a crap shoot for me. I agree about the EMLA if you can get it, use it. My center had me change the needle every 7 days and then flush it once a month if it wasnt being used. I needed heparin because my lines would clot easily, but it is up to your center.
<br />I hope this helps. If you have any more questions, please feel free to ask.
 
J

jenhum

New member
I'm on my third port now, got my first when I was 14, second when I was 22, and my third when I was 26. I've never had one put in while I was doing IV's, but I assume that you can use it immediately. I feel like it would be more painful to use it right away though.

When you're doing IV's, you leave it accessed all the time, and you change the needle once a week. When you're not on IV's, it needs to be flushed once a month. I've been accessing my own port and flushing it every month by myself for about 8 years- it's pretty easy to do! I don't find that it hurts too bad, not much worse than a blood draw IMO. It gets easier over time too, as the scar tissue builds up it hurts less and less to access it each month.

When accessed, they can provide you with aqua guards to shower. I've been told NOT to shower with just the tegaderm covering the needle. Honestly, it makes me kind of nervous even with the aqua guard, though I'm not sure why. I just try to keep it as dry as possible.

It is really really sore for about a week, and a little sore for about a month. After that, I don't even notice that it's there unless it's accessed, and even then I only really feel it when I'm laying on my side/stomach.

I LOVE my port. I've always had really crappy veins, so even though I've had to do 3 port insertions and 2 port removals, I absolutely think that it has been worth it.

ETA: the only downside to a port is that b/c of the metal, it's possible for some medicine to stick to the port, so most CF docs won't allow drug levels to be drawn from the port. So I always do IV Tobra, and have to be stuck for my weekly peak/trough.
 
J

jenhum

New member
I'm on my third port now, got my first when I was 14, second when I was 22, and my third when I was 26. I've never had one put in while I was doing IV's, but I assume that you can use it immediately. I feel like it would be more painful to use it right away though.

When you're doing IV's, you leave it accessed all the time, and you change the needle once a week. When you're not on IV's, it needs to be flushed once a month. I've been accessing my own port and flushing it every month by myself for about 8 years- it's pretty easy to do! I don't find that it hurts too bad, not much worse than a blood draw IMO. It gets easier over time too, as the scar tissue builds up it hurts less and less to access it each month.

When accessed, they can provide you with aqua guards to shower. I've been told NOT to shower with just the tegaderm covering the needle. Honestly, it makes me kind of nervous even with the aqua guard, though I'm not sure why. I just try to keep it as dry as possible.

It is really really sore for about a week, and a little sore for about a month. After that, I don't even notice that it's there unless it's accessed, and even then I only really feel it when I'm laying on my side/stomach.

I LOVE my port. I've always had really crappy veins, so even though I've had to do 3 port insertions and 2 port removals, I absolutely think that it has been worth it.

ETA: the only downside to a port is that b/c of the metal, it's possible for some medicine to stick to the port, so most CF docs won't allow drug levels to be drawn from the port. So I always do IV Tobra, and have to be stuck for my weekly peak/trough.
 
J

jenhum

New member
I'm on my third port now, got my first when I was 14, second when I was 22, and my third when I was 26. I've never had one put in while I was doing IV's, but I assume that you can use it immediately. I feel like it would be more painful to use it right away though.
<br />
<br />When you're doing IV's, you leave it accessed all the time, and you change the needle once a week. When you're not on IV's, it needs to be flushed once a month. I've been accessing my own port and flushing it every month by myself for about 8 years- it's pretty easy to do! I don't find that it hurts too bad, not much worse than a blood draw IMO. It gets easier over time too, as the scar tissue builds up it hurts less and less to access it each month.
<br />
<br />When accessed, they can provide you with aqua guards to shower. I've been told NOT to shower with just the tegaderm covering the needle. Honestly, it makes me kind of nervous even with the aqua guard, though I'm not sure why. I just try to keep it as dry as possible.
<br />
<br />It is really really sore for about a week, and a little sore for about a month. After that, I don't even notice that it's there unless it's accessed, and even then I only really feel it when I'm laying on my side/stomach.
<br />
<br />I LOVE my port. I've always had really crappy veins, so even though I've had to do 3 port insertions and 2 port removals, I absolutely think that it has been worth it.
<br />
<br />ETA: the only downside to a port is that b/c of the metal, it's possible for some medicine to stick to the port, so most CF docs won't allow drug levels to be drawn from the port. So I always do IV Tobra, and have to be stuck for my weekly peak/trough.
 
M

Mallymookcf

New member
i just got my first port 3 1/2 weeks ago. it is so far the best thing i have ever done. i too have a terrible time with piccs. my veins spasm and contract on the picc line and they cant get it in or out. so i have had to be under conscious sedation to have them placed so they could try many veins at once without all the pain and trauma for me. my last couple piccs i got clots in, and that is with preventative blood thinners too. so when i went in the hospital coughing up tons of blood 3 1/2 weeks ago, they wanted to get me iv meds quickly...so this time we decided to do a port. i was completely under (general anasthesia). it was super easy. i woke up and was not in pain at all. every now and then it would be tender or sore the first couple days, but no worse than the pain of a picc line in ur arm at first. they started ivs immediately through the port when i woke up. while i was under having the port placed that is when they inserted the needle...so i did not have to have it accessed while i was awake. i went home a day later on iv meds, and my home health nurse came and removed the needle after my 2 weeks of treatment. now its just a small bump on my chest, not very noticeable at all!! you will love it!!!!
Good luck and God Bless!
 
M

Mallymookcf

New member
i just got my first port 3 1/2 weeks ago. it is so far the best thing i have ever done. i too have a terrible time with piccs. my veins spasm and contract on the picc line and they cant get it in or out. so i have had to be under conscious sedation to have them placed so they could try many veins at once without all the pain and trauma for me. my last couple piccs i got clots in, and that is with preventative blood thinners too. so when i went in the hospital coughing up tons of blood 3 1/2 weeks ago, they wanted to get me iv meds quickly...so this time we decided to do a port. i was completely under (general anasthesia). it was super easy. i woke up and was not in pain at all. every now and then it would be tender or sore the first couple days, but no worse than the pain of a picc line in ur arm at first. they started ivs immediately through the port when i woke up. while i was under having the port placed that is when they inserted the needle...so i did not have to have it accessed while i was awake. i went home a day later on iv meds, and my home health nurse came and removed the needle after my 2 weeks of treatment. now its just a small bump on my chest, not very noticeable at all!! you will love it!!!!
Good luck and God Bless!
 
M

Mallymookcf

New member
i just got my first port 3 1/2 weeks ago. it is so far the best thing i have ever done. i too have a terrible time with piccs. my veins spasm and contract on the picc line and they cant get it in or out. so i have had to be under conscious sedation to have them placed so they could try many veins at once without all the pain and trauma for me. my last couple piccs i got clots in, and that is with preventative blood thinners too. so when i went in the hospital coughing up tons of blood 3 1/2 weeks ago, they wanted to get me iv meds quickly...so this time we decided to do a port. i was completely under (general anasthesia). it was super easy. i woke up and was not in pain at all. every now and then it would be tender or sore the first couple days, but no worse than the pain of a picc line in ur arm at first. they started ivs immediately through the port when i woke up. while i was under having the port placed that is when they inserted the needle...so i did not have to have it accessed while i was awake. i went home a day later on iv meds, and my home health nurse came and removed the needle after my 2 weeks of treatment. now its just a small bump on my chest, not very noticeable at all!! you will love it!!!!
<br />Good luck and God Bless!
 
M

mag6125

New member
I just wanted to say my answers are pretty much the same as everyone elses except for me accessing it doesn't hurt at all. Its a quick prick, less than getting blood drawn and then I usually forget its there. When ever I'm on IVs I get all my weekly blood work drawn from my port. The only thing I have trouble with is they usually don't get blood return when its first accessed, but after a couple doses of meds it gets perfect blood return. I've been told this isn't real common but I've never had any problems with clotting or anything. I would also say ask your surgeon about your options as far as location goes. Part of the reason I waited so long to get one was because I didn't want it up in my chest where it would be real noticable. My surgeon was awesome and was able to put it lower in my rib area kinda on the side. The only time anyone can see it is when I have a bathing suit on. Its honestly the best thing I've ever done, I wish I would have done it a long time ago! Good luck with yours!
 
M

mag6125

New member
I just wanted to say my answers are pretty much the same as everyone elses except for me accessing it doesn't hurt at all. Its a quick prick, less than getting blood drawn and then I usually forget its there. When ever I'm on IVs I get all my weekly blood work drawn from my port. The only thing I have trouble with is they usually don't get blood return when its first accessed, but after a couple doses of meds it gets perfect blood return. I've been told this isn't real common but I've never had any problems with clotting or anything. I would also say ask your surgeon about your options as far as location goes. Part of the reason I waited so long to get one was because I didn't want it up in my chest where it would be real noticable. My surgeon was awesome and was able to put it lower in my rib area kinda on the side. The only time anyone can see it is when I have a bathing suit on. Its honestly the best thing I've ever done, I wish I would have done it a long time ago! Good luck with yours!
 
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