Port vs PICC -- i am listed for tx...

kittencaitlin

New member
hi,

I am currently listed for transplant. 30 years old. have a PICC currently in my left brachial, its been there since february 13. I have had dozens of PICCS, probably close to 50, since I was a young teenager.

lately my cf center (boston children's) is more paranoid than ever about clots. i think it is partially them trying to get their numbers down, etc., but they seem to care more about them now than they ever did. My dr was so anxious to get this PICC out of me a few weeks ago when i went off abx, but I persuaded him to let me keep it because I felt like i'd need abx again soon...and I did.

I have been on antibiotics since August and so this is my third picc. mostly because the other two were removed since i was "getting better" at the time, and then got sick again. Nothing was wrong with the PICCS when they were removed. I also don't have a problem with piccs. i am definitely used to them and they don't bother me at all.

My dr just suggested getting a port. its not the first time it has been suggested obviously, but i have never needed access this much during my life until recently (used to be just once a year or so). He is so afraid of clots, that this is his main reason.

But my reading suggests that ports are at risk for clots too...almost the same? I see different things. I know some people have terrible clots with piccs, and some dont. Knock on wood I haven't yet - but i REALLY dont want one. Getting a port concerns me though because of infection - even the mere placement of it. I am on the TX waiting list and life is very slow right now. I don't even like the thought of being sedated in my current state. I am on o2 24/7 and my health is precarious. It doesn't seem worth it to me? But I don't know if I am being silly. Maybe a port would make life easier.

I am also small and thin, and my heart is prone to SVT (supra ventricular tachycardia)....and just the placement of the port kind of turns my stomach.

Any advice out there? Would you go for a port at this stage of the game or would you just stick to PICCS?

thnx

PS - my piccs usually go in well too. my veins are still OK.
 
G

Gorf

Guest
I am 48 and will be going for a transplant evaluation soon. I am in hospital now. 3rd this year already. I was like you about getting a port, didn't like the thought of it. Unfortunately my veins in arms are worn out from pics. They even tried mid lines with no luck. The day after the port is the worst of course, was very sore. I got it last july/august. They gave me pain med when it was put in I was awake. I find it is easier to manage for taking showers and when not needing antibiotics, line is removed. Port underskin. I do normal activities, even get in pool. No wrapping since when no line is in it. I also found it easier to cover the area on my chest then have someone help me wrap my arm before showering.
 

nmw0615

New member
I got my port last November. I agree with almost all of what Gorf said, except the showering part. It was much easier for me to shower with the PICC. I wrapped a sandwich bag (with the sealed end cut off) around it and taped the edges. It is more difficult to protect my accessed port. Being female, breasts get in the way of having an easy taping route, so to speak. That said, I think a port was the right choice. Difficulty showering is an okay trade off in my opinion.
 

athletixbc

New member
My doctors waited until it was difficult to find a good spot to place a new picc (due to scarring from removed piccs) before they placed a port. I have to tell you I wish I'd gotten a port MUCH sooner. I was concerned about it being visible and people would gawk because of this lump coming out of my chest, but the truth is you hardly even notice it's there. Sometimes I look in the mirror and forget it's even there.

Plus, I got a Groshong closed-tip port, which means that I don't need to use heparin or other anti-clotting medication for port maintenance. Just 20cc normal saline once a month when not in use.
 
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daniela.l

Guest
I'm a new CF'er to this site but I just wanted you guys to know that I have a blog about my transplant journey. I would appreciate it if you would check it out as I barely made it :)
catchingyourbreaths.wordpress.com

-Daniela, 18
delta F508
 
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