TICMOMOFF1
New member
When do you decide to get a port? What is the deciding factor? This is her 3 rd hospital stay in 9 months. What are the pros & cons of a port for a cf-fer?
When to get a PORT
- Thread starter TICMOMOFF1
- Start date
I've been wondering the same thing. My wife has CF and has resisted getting a port... she is fine with getting a pic line when needed. I was wondering if it is easier to take a shower with a port. When the port is accessed, is it accessed continually for 2 weeks?
iefisherman
New member
I got a port a year ago. I got a blood clot in my jugular vein as a result, so now i'm on blood thinners. That being said I still am glad i got it. It is much more comfortable than a picc line, and they were having a hard time getting picc lines in anymore. The lines have to be changed after a week so you generally have to be accessed twice. I have a double lumen so they use one side then the other during a 2 week iv. The downside to that is the access points are almost half the size of the single lumen. I have had the nurses who flush my port every month miss twice. The port flush is every month unless you go on ivs then it gets flushed anyway. I always had bad luck with picc lines, and had some bad luck with the port, but I'm still glad i got it. I find its much easier to change lines by mtself than a picc line, and i think its easier to shower with. There is a lot to think about but for being in the hospital that often i would think the port is the way to go.
mysticrose
New member
My oldest got her first port 8 yrs ago. It lasted 7 yrs and was the best decision we ever made. She blew thought picc lines like there was no tomorrow. My second oldest dd just got her first port. She is 14, just had her first tune up in 5 yrs. when they attempted to do a picc it failed horribly. Three different pokes and seven different sized lines. It also makes hospital stays shorter, since she can just come home and do the antibiotics.
K
katethekid
Guest
I'm 27 and on my 3rd port. I had my first put in when I was seven and receiving weekly gammagaurd infusions for my immune deficiency. It was removed after a couple years due to non use. (But much better than multiple central lines) The second was put in at 16 due to frequent hospitalizations for pancreatitis and antibiotics. It was also removed for non use after a few years. This port I've had since end of July, once again due to frequent hospitalizations. I have been lucky, knock on wood, no problems with any of mine. Other than feeling like I'm playing twister to get it to draw back, lol. I usually have to sit straight up and hold my right arm to the ceiling. This port is on the right side of my chest, the other two were in the left. I wanted it on the same side to avoid extra scarring, but the surgeon said there was too much scar tissue built up to use the same site. My veins are shot, they can't even get a tube of blood without accessing me 9 times out of 10. I do suggest a PowerPort by Baurd if you get one. It's considered the best and can be used for iv contrast unlike other ports. I have other cf friends who avoided ports forever but loved it once they got one. I guess I got them so easily since I'd already had them. Good luck!
And since my signature looks like it dissapeared- Caitlin, 27 y/o w/cf, cfrd, and b cell immune deficiency. 3 ports, 6 pancreatic stent procedures, whipple, puestow, and partial pancreatectomy. Culture clearof Aspergillis and pseudomonas since I was under ten and I hope they stay gone
Currently culture NTM and staph. J-tube placed 3 months ago. Live, Laugh, Love!
And since my signature looks like it dissapeared- Caitlin, 27 y/o w/cf, cfrd, and b cell immune deficiency. 3 ports, 6 pancreatic stent procedures, whipple, puestow, and partial pancreatectomy. Culture clearof Aspergillis and pseudomonas since I was under ten and I hope they stay gone
Currently culture NTM and staph. J-tube placed 3 months ago. Live, Laugh, Love!
W
windex125
Guest
when to get a port
I have a double mediport in my left shoulder area for 13yrs now - I have not used it for 4 yrs, which is great.... but I am keeping it in as long as it lasts, I also had a bad infection time 2001 one after another and the picks were not holding up when they suggested it I panicked, but I have to say it's the best thing I ever did. I get it flushed once a month as well and the nurse comes to my home. I do not think I can do it myself. So I say get it definitely. Pat 59/CF
QUOTE=katethekid;959975]I'm 27 and on my 3rd port. I had my first put in when I was seven and receiving weekly gammagaurd infusions for my immune deficiency. It was removed after a couple years due to non use. (But much better than multiple central lines) The second was put in at 16 due to frequent hospitalizations for pancreatitis and antibiotics. It was also removed for non use after a few years. This port I've had since end of July, once again due to frequent hospitalizations. I have been lucky, knock on wood, no problems with any of mine. Other than feeling like I'm playing twister to get it to draw back, lol. I usually have to sit straight up and hold my right arm to the ceiling. This port is on the right side of my chest, the other two were in the left. I wanted it on the same side to avoid extra scarring, but the surgeon said there was too much scar tissue built up to use the same site. My veins are shot, they can't even get a tube of blood without accessing me 9 times out of 10. I do suggest a PowerPort by Baurd if you get one. It's considered the best and can be used for iv contrast unlike other ports. I have other cf friends who avoided ports forever but loved it once they got one. I guess I got them so easily since I'd already had them. Good luck!
And since my signature looks like it dissapeared- Caitlin, 27 y/o w/cf, cfrd, and b cell immune deficiency. 3 ports, 6 pancreatic stent procedures, whipple, puestow, and partial pancreatectomy. Culture clearof Aspergillis and pseudomonas since I was under ten and I hope they stay gone Currently culture NTM and staph. J-tube placed 3 months ago. Live, Laugh, Love![/QUOTE]
I have a double mediport in my left shoulder area for 13yrs now - I have not used it for 4 yrs, which is great.... but I am keeping it in as long as it lasts, I also had a bad infection time 2001 one after another and the picks were not holding up when they suggested it I panicked, but I have to say it's the best thing I ever did. I get it flushed once a month as well and the nurse comes to my home. I do not think I can do it myself. So I say get it definitely. Pat 59/CF
QUOTE=katethekid;959975]I'm 27 and on my 3rd port. I had my first put in when I was seven and receiving weekly gammagaurd infusions for my immune deficiency. It was removed after a couple years due to non use. (But much better than multiple central lines) The second was put in at 16 due to frequent hospitalizations for pancreatitis and antibiotics. It was also removed for non use after a few years. This port I've had since end of July, once again due to frequent hospitalizations. I have been lucky, knock on wood, no problems with any of mine. Other than feeling like I'm playing twister to get it to draw back, lol. I usually have to sit straight up and hold my right arm to the ceiling. This port is on the right side of my chest, the other two were in the left. I wanted it on the same side to avoid extra scarring, but the surgeon said there was too much scar tissue built up to use the same site. My veins are shot, they can't even get a tube of blood without accessing me 9 times out of 10. I do suggest a PowerPort by Baurd if you get one. It's considered the best and can be used for iv contrast unlike other ports. I have other cf friends who avoided ports forever but loved it once they got one. I guess I got them so easily since I'd already had them. Good luck!
And since my signature looks like it dissapeared- Caitlin, 27 y/o w/cf, cfrd, and b cell immune deficiency. 3 ports, 6 pancreatic stent procedures, whipple, puestow, and partial pancreatectomy. Culture clearof Aspergillis and pseudomonas since I was under ten and I hope they stay gone
Currently culture NTM and staph. J-tube placed 3 months ago. Live, Laugh, Love![/QUOTE]imported_Momto2
New member
I'll be doing a port next time. For this last IV stint I went through 2 PICCS and 3 peripheral IV's in 12 days. A grand total of 41 sticks. The PICC folks wont work on me again, they say my veins are a lost cause. Nurses putting in the peripherals have the same story. So I dont have a choice in the matter. A port it is. And I do all home IV's since I refuse to be hospitalized.
Helenlight
New member
Or daughter got her port at 2.5 years old. She was just getting poked with needles too much, and they had to put her under anaesthetic to get picc or central or hickman lines in. I was worried about the port, it just seemed drastic, but I'm so glad she has got it now. It took 1 hour to put it in (it was taking them 3-4 hours to put the other lines in!), we went home that evening and she was back at the playground the next day. She can do anything she'd normally do, including swimming. She had a hospital stay in July and access was a breeze. it really has only been pro's for us. The only problem we ever had was when they tried to do her bloods from it the first time it was accessed and it didn't draw back. If I had known at the time that the bloods weren't essential, I would have waited. It has worked just fine since then.
TICMOMOFF1
New member
Well we're in again and we decided to do the PORT this time. She is really loving it. She has been very sore but she said that it is worth it.
My son had his placed in April. The director of the transplant team placed it. We love it how, but while it was being placed the doctor punctured his lung twice, causing it to collapse. Ended up with a one week hospital stay and a chest tube. N the bright side, the port has worked perfectly.
H
Hail2Pitt
Guest
I got my first port placed in August, and I like it. My case is a little bit different - I take long-term IVs for M. Abscessus, and have to be on IVs straight for a year or more. The PICC line was never really an option for this, and in the past I've had tunneled Hickman catheters. While I liked those a lot (as much as one can like tunneled catheter), it wouldn't be a good option for someone who's only on IVs for relatively short periods at a time. There's also a higher risk for infection with those.
Anyway, I'd definitely recommend the port. For me, the procedure to get it placed was pretty quick and uneventful. I was sore for quite a while afterward, but it was worth it. After a couple months, I became totally independent with it - I access and de-access the port myself, change my own dressing, etc. For someone who is on daily IVs, the port stays accessed all the time (the needle needs to be changed weekly). I've lived the last four months with an accessed port, and though it took some getting used to at first, now it's not a big deal (and I'm very active). You do have to be careful bathing when its accessed, can't go swimming, etc., and it (momentarily) hurts if something hits it hard, but when it's not accessed, you can do anything you want.
I've had PICCs in the past, and I'd take an accessed port over a PICC any day. And when the port isn't accessed, you barely know it's there other than having a bump under your skin. You need to flush an unused port once a month with heparin, but that's easy.
Let me know if I can provide any more info!
Anyway, I'd definitely recommend the port. For me, the procedure to get it placed was pretty quick and uneventful. I was sore for quite a while afterward, but it was worth it. After a couple months, I became totally independent with it - I access and de-access the port myself, change my own dressing, etc. For someone who is on daily IVs, the port stays accessed all the time (the needle needs to be changed weekly). I've lived the last four months with an accessed port, and though it took some getting used to at first, now it's not a big deal (and I'm very active). You do have to be careful bathing when its accessed, can't go swimming, etc., and it (momentarily) hurts if something hits it hard, but when it's not accessed, you can do anything you want.
I've had PICCs in the past, and I'd take an accessed port over a PICC any day. And when the port isn't accessed, you barely know it's there other than having a bump under your skin. You need to flush an unused port once a month with heparin, but that's easy.
Let me know if I can provide any more info!
imported_MaggieB
New member
I got a port put in Oct 2011, and it was one of the best CF decisions I ever made. I was in the hospital on IVs more than I wanted, and I was getting dehydrated at the drop of a hat. After a few weeks on it, I got some of the infusion nurses to teach me how to access it myself, and now I infuse a couple of bags of saline once a week. The hydration alone has kept me out of the hospital many, many times, not to mention the few times I've used the port for IV antibiotics. Highly recommend.