Topic: PICC line complications...input & experiences please!
SunRa
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Member # 3559
posted
I had a PICC placed tues 6/16 by an IV nurse team, using ultrasound. it was kind of a disaster getting it in - took about 4 tries, one time hitting a nerve that shot a lightening bolt of painful tinging & numbness down my arm into hand.
then it was inserted too deep into the heart (confirmed via chest xray) and I had severe heart palps, chest pain, shortness of breath. they pulled it out a bit which helped. but at night I started getting the same heart & chest symptoms again...and I could also feel the line in there although they said I wouldn't be able to. it's an uncomfortable /awkward feeling that reminded me of when I had an endoscopy and woke up during it.
hospital said to give it a few days for everything to calm down since it was a difficult insertion and my veins and heart are pretty irritated.
fast forward to today...still having the chest pain (as well as some nerve pain in arm/hand)... and also my arm has become extremely painful - more so than the first couple days and it extends up into my armpit and shoulder. just today my upper arm became red and hot and firm to the touch.
my dr told me to go to the ER immediately. they did a chest xray & ekg. xray was ok. I think the ekg was normal too, they didn't tell me otherwise. cbc was normal i believe.
the ER dr took one look at it, thought it could be infected, and suggested pulling the line. he called the IV nurse to look at it and she disagreed, thinking it was more likely an inflamed vein. they went off to talk about it for a while but all I could overhear was him suggesting an ultrasound.
but then they released me with the line still in place, no further tests and with instructions to keep it elevated above the heart, warm compresses, and ibuprofen. and to come back on tues, or earlier if the pain gets worse. if it doesn't get better, she did say the line may have to be pulled.
they also gave me a sheet with the dx being "thrombophlebitis". I came home and looked it up and it seems it means a blood clot?? there was never any mention of a blood clot the whole time I was there. now I'm nervous
when the dr said he wanted it pulled, I had mixed feelings...I was so upset since I really need the IV and went through sooo much to get it. but at the same time relieved because it's been causing me so much pain. but also, he seemed to be pretty anti-lyme, quoting all the IDSA b.s, so I wondered if that also was driving him to want it pulled.
please help me make some sense of all this! they said I could continue my IV meds over the next couple days. but now I'm nervous about a blood clot. what should I be looking for?? they weren't too helpful.
I had a midline a few years ago and had no complications with it (other than it also being a little tricky to get it in). but this time I'm doing a different med and needed the PICC.
sorry for the ridiculously long post. thanks so much for any input!!
Posts: 1563 | From MA | Registered: Jan 2003
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glm1111
Frequent Contributor (5K+ posts)
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posted
Hi,
I had a line in for 6 mos with no problems. I was also given 6 mos of IV Rocephin. Really didn't make any difference in treating the infection. IMO, it should not have taken 4 trys to insert this picc line.
I had mine inserted in a cath lab done by doctors in a major hospital. If it were me and they suspected a phlebitis, I would have it pulled especially if the doctor suggested it.
What kind of med does this doctor want to give you that can only be done IV? If you are still having pain tommorrow and your arm is warm to the touch, if it were me I would go back to the E R and have it pulled. Sorry you are going through this,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Oh dearest Ray of Sun! I am so sorry that this is happening to you. How utterly miserable.
I've never had a PICC, but have heard enough horror stories to be very concerned. Can you reach your LLMD?
I always suggest to be better safe then sorry. Even though you went through a tremendous amount of nonsense just to get it in... It may be better to take it out and start over when things have been given the 'all clear'.
And that from someone who actually knows what they are doing and will converse with you about it too!
Here is a quick copy paste job of what to look for as far as problems with a PICC.
Please know that we care, so please keep us posted. M
...
Possible problems:
PICC catheters can cause irritation to the vein wall. This usually happens within the first 48 hours of insertion. Your arm above the catheter can become very red, tender and warm. This is called a local phlebitis. It usually resolves with heat and elevation of the arm.
These lines do, at times, clot off despite proper flushing. There are medications which may be used to dissolve the clot inside the catheter.
When to call the doctor
Swelling of the area where the port is
Shortness of breath or chest pain
Redness, pain, tenderness around catheter or port
Redness or tenderness along the arm vein in the upper arm (especially if you have a PICC line)
Unexplained fever
Catheter or port malfunction
Pain with catheter or port injection/infusion
Mental status changes
Excessive tiredness
Weight loss
When to go to the hospital
If your problems are not resolved with the call to your doctor, seek care in a hospital's Emergency Department. In particular, shortness of breath, chest pain, or sudden changes in mental status may indicate a dire emergency, and you should go to the Emergency Department immediately.
SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
Mel, thanks for the good info & advice as always! LLMD wasn't much help, said I needed to go through my PCP since they're the ones who ordered the PICC and are affiliated with the hospital (LLMD ordered med).
It's not much better today. If there's no change by tomorrow I have to go back to the hospital.
If I end up needing another line at some point, I'll probably insist on having it done under fluoroscopy (although the amount of radiation scares me a bit...especially after the dozens of tests I've already had, incl 3 chest xrays in just the last week alone)
Gael, thanks so much for your reply. IV Rocephin is one of the only abx I improved on in the past. but this time I'm doing Claforan, which required a PICC rather than a midline.
I'll let you know what happens tomorrow :/
Posts: 1563 | From MA | Registered: Jan 2003
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posted
SunRa, When I got my PL, I developed much pain and the home health nurse was clueless. My GP caught it and told me to get an ultrasound ASAP. There were clots. I was able to keep the PL, but I was hospitalized for the weekend. I had to take Lovanox injections until the coumadin kicked in and was on that until the PL was pulled 5 mos later.
Seems to me, you should get an ultrasound immeeeediately, certainly if the pain gets worse. Aliyah
Posts: 830 | From Colorado | Registered: Mar 2005
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SunRa
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Member # 3559
posted
Aliyalex, yikes, that's scary. thanks for sharing your experience. did you have blood work done beforehand to know whether you'd be at a greater risk of clots? I believe all my tests were ok. but with my symptoms, I agree that I need an ultrasound asap. unless the pain gets worse I'm gonna try to wait until tomorrow though so I can avoid the ER
Posts: 1563 | From MA | Registered: Jan 2003
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Dawn in VA
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Member # 9693
posted
SunRa, I'd like to offer my experience with my PICC placed a couple of years ago. I had mine pulled out twice b/c of pain in the arm alone (not even the chest discomfort that you have). I had 2 different ER docs do it without question and was able to have it placed in the opposite arm once within hours following withdraw and the other time the following day. Dx was basically "irritation of the vein(s)". It is absolutely absurd to me that they did not do a doppler. If I were you, I'd get my behind to the ER and have it withdrawn, or at least thoroughly checked via ultrasound, immediately. IMO, it's crazy that it took 4 tries to have it placed in the first place, and the additional problems you incurred during placement plus the physical symptoms you're experiencing now is a little concerning.
The third and final time I had mine pulled was one week before treatment completion. I had pain in my arm and it turned out to be caused by three blot clots. Per my doc's advice, I went to the ER immediately and the doppler diagnosed it. Don't mean to frighten you, but I would not wait on this one. (If you need it pulled then replaced, I'd go somewhere else/get someone else to perform the second procedure as extra caution.)
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
I had a picc line in for about a week and ended up in the hospital with blood sepsis.
It started as pain and soreness around the entry site and then developed into a high fever.
They put the picc line in at my house. (never again). I only got one week of Iv Rocephrin so I can't even say if it worked.
I've been scared to death of the picc lines since then. Best of luck
Go with your gut, when I called my LLMD he told me initially I was herxing and had to ride it out. Good thing I knew better.
Posts: 114 | From New York | Registered: Jun 2009
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posted
There seemed to be no problem with insertion. We were all surprised to have complications. I had to be followed by a specialist in veins and heart till it was pulled. I forget his specialty. There was no indication that there would be problems beforehand.
Will you let us know what happens?
Posts: 830 | From Colorado | Registered: Mar 2005
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SunRa
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Member # 3559
posted
thanks so much for your replies, they were very helpful.
I went back to the hospital today and had an ultrasound. it showed that the vein had collapsed around the line and there was a small blood clot and decreased blood flow.
needless to say, they pulled the PICC
I'm trying to decide whether or not to try for a second. my chest and arm are still so painful so I'm not sure I'm physically (or mentally) ready for another one so soon.
but...I do want to give this treatment a shot and already have everything else all set up and my meds delivered, etc. My CNS/neuro sx are progressing very rapidly and I don't do well on orals.
IF I do it, it would have to be in the other arm which is my dominant arm which would suck. And although I have to go to that same hospital in order for insurance to cover it, this time I'd insist on having it done by someone else and under fluoroscopy. it seems like that would decrease the risks for complications with the insertion?
I'm gonna talk to my drs tomorrow to figure out the next step. If anyone has a strong opinion one way or the other about trying for a 2nd PICC, please post!! I'm just so exhausted and confused about it all so any other input helps
thanks again for your help!
Posts: 1563 | From MA | Registered: Jan 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
I'm so relieved that the line was pulled, I can't even begin to express my relief!
I think your decision to talk it over with your team of docs is a sound one. I also think that YOU know best if you are ready to undergo another surgery so soon.
One thing I learned about any line inserts is to ask for the oncology unit to do the procedure. They are the most experienced.
Follow your intuitions here, and they will not lead you astray.
Sweet dreams tonight, M
Posts: 7052 | From Colorado | Registered: Mar 2003
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SunRa
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posted
Mel, thanks for the good advice I'm a little relieved myself. (although of course VERY frustrated at the same time) thanks for the oncology tip. I'll let you know what we decide to do. for now, I'm off to bed (and very happy I don't have to wake up early for my morning infusion!!) sweet dreams to you as well!
Posts: 1563 | From MA | Registered: Jan 2003
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posted
so advice as i can give: for future blood draws stay away from that vein. double check wiht ur dr's so you know. ususally is internal brachial and if you tell the lab tech that they should know
i had prob. with PICC yrs ago (dx then was pneumonia). line did about same thing, and was pulled. since i had gotten IV meds in hosp and 2 wk at home we called it quits.
now, i have a port a cath and no problems. for me, iv tx plan is open ended (as long as ins. will pay due to severe neruo and cardio) so port was my choice given the duration
IF you have another line put in :: would recommend:
1) under floroscope with real time xrays as well 2) get rx for valium or of the like (klonopin)etc to help keep you calm and thus veins relaxed 3) make sure you have expert doing this!! onco. unit is great idea, they place lines daily. 4) on line in, may want to look into zyflamend as supplement to help with body reaction to swell at line site. good to start it before hand.
that has been GREAT supplement for me
should NOT take 4 tries!!!!! sounds like you may have been part of teaching? make sure ur not this next time.
best wishes. line problems can be very fustrating. plus look at ur abt. exppreation date on it. may help guide your decision.
using dominant hand may not be as bad as think, can be placed above elbow bend for greater movement.
also- be careful of how you go about ur day with PICC line in place. certain things will aggrivate it. reaching, lifting, over extention, etc
best wishes
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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ArtistDi
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Member # 2297
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SunRa,
Hey there, girl. I am the queen of picc lines, having had one inserted in alternate arms for the last 4 years. I remember one time I had chest pain and a blood clot was suspected. This was determined by a blood test, which can be administerd to you. They did a CAT on me, and the clot was tiny, enough for the body to absorb.
I felt better over the next couple of days and I was able to use the line. I have had mine put in by an IV nurse three times, but one time was not a good one--line curled near the heart. An interventionist radiologist helped straighten it and he put the 4th one in surgery room with x-ray guidance.
Maybe a readiologist would do better for you. Don't despair. A picc get you through a lot. Ask doctors about a blood test for clotting.
Di x
Posts: 1572 | From Hatfield, MA, USA | Registered: Mar 2002
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Melanie Reber
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posted
I thought of one more tip for you...
Be certain that you are well hydrated before the procedure. This goes for blood draws too.
Of course I always forget myself. But my friend who is an RN assures me that this would make a huge difference in the problems I always experience with draws.
Drink lots of water to pump up those veins! Posts: 7052 | From Colorado | Registered: Mar 2003
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I am so sorry that you are having troubles with your line and had to have it pulled. That is crazy.
I just had my PICC put in on the 18th. So far, I have been okay. I think I am over-using my arm and that could be giving me some problems but I am not so sure either.
I am having intermittent chest pain...near the end of the catheter. My arm isn't overly sore but I am sore in my chest, along the path of insertion. My arm pit is very sore too.
I am going to call my LLMD today and see what he says. I am scheduled to see him tomorrow so he will probably tell me to rest, take some advil and see him tomorrow.
I am sorry that you had to go through that. 4 times to get it put in doesn't sound right. I had mine put in under fluroscopy. It took 5 minutes.
Good luck and I wish you luck with your treatment. Posts: 114 | From Atlanta, GA | Registered: May 2009
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SunRa
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Member # 3559
posted
MY3BOYS, thanks - lots of good advice! I really appreciate it.
mine was inserted into the cephalic vein which I just read online increases the chances of having insertion-related phlebitis. great! I believe they tried the other ones first.
Di! thanks for the info and encouragement. so great to hear from you. I'd love to chat more as soon as I'm up for it. did you ever have the fluoroscopy? I'm a little worried about a reaction to the dye and wondering if you found a way around that?
Mel, thanks for the additional tip!
bncrump, how did your appt go? did your llmd have an idea of what could be causing your chest pain? thanks for the good wishes
----------------------------------------------
So, I had an appt with my dr today and we discussed my options (peripheral line, port, another PICC) and decided to try for another PICC line...but this time in the opposite arm and done by a radiologist under fluoroscopy/xray.
I need more time to recover though so I won't be doing it until early next week. I'm nervous about it but trying to trust that this is the right decision.
thanks again for all the advice and support. I'll keep you posted.
Posts: 1563 | From MA | Registered: Jan 2003
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sammy
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I'm sorry to hear about your PICC line complications. I've been folowing your post and praying for you.
If you are concerned exposing yourself to more radiation and having a reaction to the dye then fluoroscopy might not be the right procedure for you.
Check with your hospital to see if their IV nurses are trained to use ultrasound technology. My was PICC line was placed by a nurse this way. She used a small portable ultrasound machine to find a suitable vein (all of mine were too small except for the Brachial) and to place the line properly. She made it look easy!
I only tell you this so that you know you have options.
Take care Posts: 5237 | From here | Registered: Nov 2007
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SunRa
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thanks sammy, I really appreciate it actually that's how I had this one done - guided by ultrasound - but maybe the nurse just wasn't as good. that or my veins are just very very tricky to work with.
Posts: 1563 | From MA | Registered: Jan 2003
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btmb03
Unregistered
posted
So sorry to hear of your PICC line probs. Is the medication you are to take available in IM shots?
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Sorry to hear of your ordeal. Probably the best advice I have seen in these posts is to have someone from oncology insert the line. They have so much experience in this area. That is how my son had his line inserted.
As with any medical condition, learn to trust and advocate for yourself. If you suspect something is wrong, push. I am absolutely shocked that the PICC line was not removed after your doctor recommended doing so. Discomfort should not last for more than a day or two and you should have been given detailed instructions on what to watch for in terms of complications/warning signals. Please pay very close attention to those instructions and contact your doctor if you should have any concerns.
My son had several problems with his PICC line. The visiting nurse who changed dressings once a week crimped his line so that he could not administer medications. She also did not follow protocol for sterile practices. Shortly after the crimp, my son felt like he was getting a cold and that night his temp spiked. To make a long story short, his PICC line was infected. It may have been his body fighting a foreign object or it could have been from less than sterile dressing changes.
Good luck.
-------------------- Audrey Posts: 19 | From East Lyme, CT | Registered: Feb 2007
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SunRa
Frequent Contributor (1K+ posts)
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posted
btmb03 - I'm not sure if it is or not, but I've had trouble with a lot of IM shots due to nerve pain,etc.
AJM - thanks for the advice. I did talk to my dr about the oncology tip and he said he would look into it.
after dealing with this for 8 yrs I've been forced to get the self-advocate thing down. the problem is I can only do so much for myself when I don't have a medical degree and the nurses and doctors are clueless. Also, I'm very sick with severe brain/CNS symptoms so it's tough to be on top of everything. it's a scary feeling needing to place total trust in others.
One thing I don't think I even mentioned above is that after getting the PICC in, they had to give me my first dose in the hospital and towards the end of it dripping I noticed the bag said "ceftriaxone" rather than the med I was SUPPOSED to be getting, "cefotaxime".
Most people probably wouldn't have noticed the difference. I told the nurse it was the wrong med and she insisted it was the right one. I told her to check the dr's order again. and then they were so apologetic. They're just so used to using Rocephin and the names are so close that they didn't double check it. I was p*ssed because now it meant I had to go back to the hospital again the next day to get the right med.
these are common, often fatal, medical errors. Thankfully in my case it wasn't dangerous. Although I almost wish it was (although not fatal of course) so that I could have had a lawsuit.
Posts: 1563 | From MA | Registered: Jan 2003
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ArtistDi
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Sunra, I did get around the dye, and the radiologist did not use any, but just used the x-ray as guidance. I firmly stated no dye, and I knew I would have my drug allergist back me up. I loved the doc, as he was very kind, and stayed with me afterwards as I rested.
Posts: 1572 | From Hatfield, MA, USA | Registered: Mar 2002
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posted
I had the PICC line put in my right arm last Friday, 6/24, it been 5 days now.
Today, i noticed my right armpit is slightly swollen, just a little but is visible, and my right collar bone (in the middle) is also slightly bigger than the left side.
I woke up this morning and had pain in left shoulder and neck, i don't know if it relate to PICC line or not, did anybody have these problems
I'll call the doctor tommorrow.
Posts: 36 | From Springfield VA | Registered: Dec 2008
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