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.
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.