OK, so, after 7 hours of testing, my PICC line was removed (because I met resistance while flushing, and it started to hurt while infusing) per my LLMD's requst.
Now, this was extremely heartbreaking, because of the battery of tests they did, and how inconclusive they were. Also, this PICC line was impossible to put in because my veins kept seizing up. I am absoluetly devestated.
This is my second experience with a PICC line. The first one was so bad I almost didn't get this one, but we were doing really well. I was told that if they remove your PICC, they won't put a replacement in the same arm. Is that true? I am not about to give up my dominant arm. That was pure hell. I don't even think I could go through the trauma behind getting another PICC line.
What are my options???
This one had a visible clot at the end when they pulled it out, though the resident, having neve before seen a PICC line couldn't recognize a solid lump of blood blocking a line if it jumped out and bit him. He tried to squeeze it ou, and just ended up playing with it, which made me even more upset. I've been so anal retentive about this PICC and flushing with heparin 2x daily that I can't even fathom this outcome.
What are all of the other methods of IV therapy. I know there's a port-o-cath, but what else?
[ 30. May 2006, 05:42 PM: Message edited by: AP ]
Posted by lou (Member # 81) on :
I had to get a hickman catheter because my arm veins totally inaccessible apparently for picc. They tried. Wasn't too surprising since they can't even find veins in my arms to do blood tests. Getting stuck in my hand now.
Central lines more expensive to install and can have troubles too.
Guess you know about IM rocephin. Don't have any info on whether other IV drugs can be administered IM instead. Haven't heard of it, except for bicillin, so I guess it isn't done.
Posted by badtick33 (Member # 9078) on :
That all sounds awful and painful -I am so sorry you are going through this! Posted by erpatti (Member # 9055) on :
I presently have whats called a midline. Its longer than a regular IV, but shorter than a picc. A nurse came to the house and inserted it. Its in my right arm , but I can bend it. I have had it in for 31/2 weeks. The nurse comes once a week to change dressing and take blood.I never had a picc, but this was not painful.
Posted by AP (Member # 8430) on :
Thanks for responses so far... We're pretty heartbroken and discouraged right now. IV is the only way to go with my treatment plan, which has been working very well.
Posted by pab (Member # 904) on :
Jordan (age 15) recently had a leak in his PICC line. He had the PICC line in for 51 weeks.
They put a new PICC in the same arm.
Good Luck!
Posted by LymeLaura (Member # 6624) on :
My daughter had problems with every picc line (over 7 lines total). She finally had a port-a-cath implanted in her chest three years ago. It sounds horrible, but is much easier than a picc line. It does have to be accessed by a nurse once a month with a new needle. (She ended up learning how to access it herself because she is very athletic and had to pull it at times for competitions.
We found the picc lines would last longer if:
1. Don't draw blood from picc line. If you have to, flush with 4 salines and 2 heparins. 2. After infusing, flush with 2 salines and 2 heparins. 3. Take a baby aspirin every day.
We had it removed two weeks ago!!! Hooray!!!!
She's now on IM bicillin 3 times a week and is better than she's been in over 10 years.
Good luck.
Posted by WildCondor (Member # 434) on :
Can you switch to orals and injections?
if not, you may need a port or a hickman, or a midline depending on your protocol.
Posted by AP (Member # 8430) on :
UP for my behalf
Posted by seibertneurolyme (Member # 6416) on :
I think you were the one I told how well PICC lines had worked for hubby. I guess I jinxed him. He had his replaced recently (was a year old). Different doc and different brand name.
Anyway after 1 week he pulled it out somehow overnight and it also had a clot. ER pulled it and he had to get a new one.
The 1st one went back in the same arm as he had had the old one in. But they put the 2nd one in the other arm. Been 3 weeks now and doing ok except he gets phantom pains where the old line was. It never really hurt while the line was in so this is kind of weird.
Have you been tested or treated for hypercoagulation? Hubby has had much less problems since going on heparin shots. Tried nattokinase and lumbrokinase, but doesn't work the same as heparin for him.
When he 1st had a PICC line he had one that lasted a couple of months and another that only lasted 2 weeks I think because of the hypercoagulation problems.
Hubby's new PICC line is slightly larger diameter than old one and the surgeon says that if it only has a clot he thinks it could be opened up with a wire (special tool). The other brand was too small in diameter to do this according to him.
I wouldn't give up yet, but be sure to be tested for hypercoagulation which could of course mean Babesia.
Good luck.
Bea Seibert
Posted by char (Member # 8315) on :
Sorry you have been through so much stress and trouble with your piccline. When they are good, they are great, but when they are bad....
My daughter lost 2 picclines recently due to yeast complications.
At first we were flumoxxed how to get abx into as she was having terrible time with oral because of bad stomach.
Tried oral SUSPENSION Zithromax 400mg MWF and amazingly she tolerated it. She is now up to M-F and we are attempting to go up to 500 or 600 mg.
Then, next month we are going to try peripheral sticks-temporary IV to try to infuse a couple times a week.
Nurse comes and puts in IV like you get at hospital and gives infusion. Then IV is supposed to last another day or two. We will see-if it is uncomfortable we will just do one and wait till next week and switch arms.
One reason we thought of this is that with her 2nd piccline, she only go 3 doses of levaquin into her but she had marked improvement in sleep, energy and anxiety, which totally amazed me. She has held those gains.
We are thinking some regular infusions while continuing the orals will knock some more of the germ load down.
That is just what we are up to. We agonized and killed ourselves trying to keep these lines and concluded it was not meant to be for now.
I hope you can get some good rest after all this!
Char
Posted by AP (Member # 8430) on :
Have an LLMD appointment this week...
UP for more options.
Posted by arg82 (Member # 161) on :
Hi,
I've been meaning to respond for a few days now and finally have some time and energy to write something. First of all, sorry for all your trouble with the PICC line.
I have a port-a-cath and I've had it for almost two years (got it in July 2004). I really love my port and it has been absolutely wonderful for off and on IV antibiotics as well as daily IV hydration (since May 2005, to help with dysautonomia/NMH).
There are a few different IV access options - mainly peripheral lines, mid-lines, PICC lines, chest central line (Broviac, Hickman), PAS Ports, and Port-a-Caths or Medi-Ports.
Peripheral lines are basically just a needle in your vein (like what you get in the hospital) and they can stay in place for about a week before needing to be changed. These are a good option if you have good veins, won't be on IVs for a really long time, and are pulsing the IVs (i.e. four days on, three days off or something like that). It requires daily flushing with saline and heparin to keep it working.
Mid-lines and PICC lines are basically the same but mid-lines only go up to about your shoulder whereas the PICC line goes all the way to your heart. Mid-lines generally are said to be good for about a month (but they can of course last longer than that) and PICC lines are said to be good for 3-4 months (and of course can also last longer). These also require daily flushing with saline and heparin to keep them working.
Chest central lines (Broviac, Hickman, Groshong, etc.) is similar to a PICC or Mid-line in that it's a tube that comes out under the skin but it's placed in the chest instead of the arm. It's minor surgery to have it placed and some doctors will allow you to shower with them (with no covering) after a few months when it has healed well.
These lines can last many months or a year or more. One of these (I can't remember which one, maybe Groshong?) only requires flushing with saline but the others require saline and heparin and all require daily flushing.
Ports are the most permenant lines and require the most work to put in, but it's still only minor surgery. PAS Ports are placed in your arm (bicep area) and Port-a-Caths are placed in your chest and the biggest difference (from what I've heard) is that a chest port can have a longer life (handle more needle sticks) than an arm port.
These lines are surgically placed under the skin and have a "port" (circular thing about the size of a quarter) that gets accessed with a special needle and then covered with a dressing. The needle can stay in place for up to a week before needing to be changed.
When the port is de-accessed (no needle in it), the port is completely under the skin and you can shower, swim, or do anything else normally. These require only monthly flushing with saline and heparin when not being used for more frequent infusions, so if you're on a break from IVs you don't need to worry about having a line that inhibits your life or flushing it everyday.
Here are some links to info about these various lines:
I hope this is all helpful for you and you make a good decision based on your life and IV situation. I'd say the biggest things to think about are a) how long you'll be on IVs, b) if you're infusing everyday versus pulsing (ports and peripheral lines are the best choices, in my opinion, when you're pulsing), and c) how active your life is and which line will best fit in with your lifestyle.
Let me know if you have any questions, especially about ports since I have quite a bit of experience with them. (I also had a PICC line for six months in 2002 so I've had experience with them, too.)
Peace and healing, Annie
Posted by tjtighe (Member # 4057) on :
What about having PICC lines inserted in radiology where they can really see what they are doing. I have a friend who did this very successfully. She had bad veins. That's what I intend to ask for.
Thanks for the links about the different types.
Posted by AP (Member # 8430) on :
quote:Originally posted by tjtighe: What about having PICC lines inserted in radiology where they can really see what they are doing. I have a friend who did this very successfully. She had bad veins. That's what I intend to ask for.
Thanks for the links about the different types.
That's all I've ever had done....
Wow arg... that's a TON of info!!! Thank you soooooo much.
Posted by AP (Member # 8430) on :
LLMD's solution is this:
Since I have small veins, we're going to try a pediatric PICC line and see if that doesn't work out. If a PICC line won't work in the arm I just had the one removed from, we'll abandon that thought and go for the Port-o-Cath. So, all hope isn't lost. Posted by arg82 (Member # 161) on :
quote:Originally posted by AP: LLMD's solution is this:
Since I have small veins, we're going to try a pediatric PICC line and see if that doesn't work out. If a PICC line won't work in the arm I just had the one removed from, we'll abandon that thought and go for the Port-o-Cath. So, all hope isn't lost.
Sounds like a good plan. I hope the pediatric PICC line works so you don't have to go through that for nothing! Let us know when you'll have it placed so we can send good thoughts your way!
Peace and healing, Annie
Posted by AP (Member # 8430) on :
I've got my pediatric PICC line in... It's just a 3 French, rather than a 5. You can't pull blood from it, and pushing saline and heparin is kind of difficult, but it's not that bad. I'm glad I chose it.
Posted by trueblue (Member # 7348) on :
Yay! I'm so glad to hear you got the thinner line in.
My piccs were that size (except the last one that was like a garden hose).
Just go slow and steady with the flushes, it'll work just fine.
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