sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
*Scroll down for quick summary and update 10/20/10*
I've only had this PICC for 5 wks and it's caused nothing but frustration for me.
The insertion site looks to be nicely healed but the hole is larger than the catheter so it leaks (clear yellow fluid, not blood) every day. This is not supposed to happen.
Now one of the lines (I have a double lumen) is occluded. I can slowly and gently flush some heparin in it but cannot get any blood return. This started on Wed night.
I contacted my local doc yesterday morning (8am) to try to get an order sent to the hospital to let the PICC nurses evaluate it and treat it with Cathflo, pull it and replace it if they cannot repair it. Thing is with my local doctor I can't get past the secretary when I call. I tried to explain to her that this is an emergency, an occlusion won't get better on it's own. If I leave it too long it could cause clots and sepsis. Asked her to please have the doctor call me ASAP.
Waited all day. Called again early this morning. Was assured that my note is on the doctor's desk. Was told "he must not have had time to read it". Again begged to her to ask him to call me ASAP.
If I don't get a call back by 3pm I'm going to the ER. This is the last place I ever want to go! My insurance told me that they will not cover an ER visit for this problem. But I don't know what else to do. If I leave the line occluded it can lead to a life threatening situation. I don't want to let it get that far.
I have not contacted my LLMD's office because they are out of state and my hospital has a new strict policy to only accept in network provider's orders. So they can't help me unless I drive up to NY. They used to accept my LLMD's orders no questions asked.
Looks like I'm going to have to look for a new PCP. This is so disappointing.
[ 10-20-2010, 11:51 PM: Message edited by: sammy ]
Posts: 5237 | From here | Registered: Nov 2007
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posted
Just go to your Dr's office. Not much they can do but address the problem if you are there in person. Bet they call the PICC nurse and get it taken care of. The weekend is coming up and ER will be your only option if they don't do something today.
Posts: 383 | From Ar | Registered: May 2007
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
My double lumen has to be cathflo'd about twice a month. It's a pain in a**, but you are not alone. I didn't habe this same problem with my single lumen.
I don't think the ER is needed. Just get the line cath flo'd as soon as you can.
Posts: 1104 | From N.California | Registered: Jan 2008
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
My double lumen has to be cathflo'd about twice a month. It's a pain in a**, but you are not alone. I didn't habe this same problem with my single lumen.
I don't think the ER is needed. Just get the line cath flo'd as soon as you can.
Also, I have itchy rashes and can't tolerate tegaderm so I have to have a dressing change every three days.
Try to hang in there, I think many people have issues with these things.
Posts: 1104 | From N.California | Registered: Jan 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
At 3pm I decided to go to the ER, either my doctor didn't want to write the order and was avoiding calling me back or the stupid MA didn't understand to tell him how important this situation was. (I think it was the stupid MA's fault, this particular one has proven unreliable in other instances too)
I knew the PICC nurses were only in the hospital until 7pm and I was told that they leave earlier if they are not needed. So I couldn't wait for the call at home any longer.
Unfortunately the ER wasn't much help. After sitting there for about 2hrs my dad called to tell me that the doctor's office called (at 5:30pm) to let me know that they faxed the TPA order to central scheduling. How crazy is that, the scheduling department isn't open past 5! And outpatient appts are only scheduled on weekdays. So getting this fixed in the ER was still my only option. (It's been malfunctioning since wed so I didn't think it wise to wait until mon or tues to get it taken care of)
So the PICC nurse came and looked at my PICC line. She confirmed that the one line wasn't working but told me that it was no problem since the other one was working fine. Can you believe that! I told her no it wasn't fine because I'm immune compromised and the stuff that clogs the line is perfect growth media for bacteria. I'm sick enough. I don't want to risk developing sepsis. I asked her to please just clear the line with Cathflo.
The PICC nurse tells me that they never use Cathflo or TPA when one of the lines is still functioning. I don't know if she was being for real or lying because it was about 6:45pm and she wanted to go home. I hope she was lying. Anyways I asked again for the TPA, told her that my treating doctor (LLMD) wanted me to have it done yesterday but he couldn't order it for me since he's in NY and my local doctor's staff were slow in getting the order faxed to the hospital today so that's why I got stuck in the ER.
Once she heard that I had an order in the hospital she perked up and told me she'd try to work something out. She ended up scheduling me to come back tomorrow at 7:30am, yikes!, to see the PICC nurses. They don't usually see outpatients on weekends so I have to meet one of them before their shift starts. So at least I should get it taken care of tomorrow. Thank God.
The ER doc was surprisingly nice and curious. He asked me all kinds of questions about Lyme, my symptoms, how I got diagnosed, etc. Said he'd never seen anyone with it before but he prescribed doxy for tick bites just incase. I thought that was pretty good and openminded.
Oh, and he confirmed that they yellow drainage was serous fluid. Said that there was nothing that can be done to stop it and that I'll have to live with it until I get the PICC line pulled. I hope he's wrong about that.
Out in the ER parking lot there was a deer standing about 3 feet away from my car. The hospital backs up to a large wooded property. They literally have Lyme right in their backyard.
So please pray for me that tomorrow goes better than today and that I get a more knowledgable empathetic nurse who is willing to properly take care of this problem.
blinkie, If I could get my hands on some Cathflo I'd administer it myself but I doubt that my LLMD would prescribe it like that. I don't have a home health nurse so I must rely on my local doc to order what I need here or go to the ER.
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posted
maybe you should find out whether you could get cathflo prescribed for next time, god forbid, should there be a need for it again.
Posts: 8430 | From Not available | Registered: Oct 2000
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Oh Sammy, this is awful! I can't believe you have to go through this! You don't deserve this!
It is unthinkable that your doctor's office did not call you back re: PICC emergencies!
Prayers sent...please let us know how it goes tomorrow!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
Sammy, I'm going to make a suggestion if you can't get home health care. Is there a cancer center anywhere near you? They usually have outpatient infusion services and can take care of your needs.
I had a HHC that was worthless and when my line was clogged I had to do the same as you. Go to the ER or get in touch with my LLMD to get cathflo. He would let me do it myself at home.
But, after all the headaches, I found an infusion clinic at the cancer center in a nearby town. It was, ironically, at the ER I went to. I go there now for dressing changes and they will cathflo when needed. It's a pain to have to drive 20 mins (and i have to go twice a week) but I know I'm in good hands with them. No more ER trips and trying to get stuff from my LLMD.
You really shouild look into it. Check your local hospitals for cancer centers and infusion clinics.
Posts: 1104 | From N.California | Registered: Jan 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Today was a much better day. God provided.
The nurse that met me on the Same Day Medical unit was super nice. I was her only patient. She came in on her scheduled day off at 7:30AM. That's the kind of nurse I was (and will be when I can work again). I enjoyed talking with her.
And I was sooo... relieved to see the PICC line nurse was the same one who expertly placed my line (and my last 2). She came in and immediately started apologizing for my bad experience in the ER last night. I didn't complain to anyone about this (except you guys) so I was stunned.
The good PICC nurse told me that had I come to the ER today there would have been no problem, the doc would have readily ordered Cathflo for my occluded line and she would have come to administer it.
I told her that I didn't want to go to the ER yesterday afternoon but felt it was necessary since the catheter had been occluded since wednesday, my local doc wasn't responding to my calls so I had no other option but to go to the ER to try to get the care that I needed.
I also told her that the other PICC nurse acted like I was crazy when I asked for Cathflo to fix the line. That she told me they "never use tPA when the other line is working". The good nurse just shook her head in disbelief.
Good nurse told me that they use Cathflo all the time, that's what it was made for. She also verified the risks of leaving the line occluded which I was already way too aware of.
Thankfully it cleared on the first try. Now I have my fully functioning PICC back. One less worry for today.
Yes I am going to request an RX for cathflo at my next f/u. It is a really safe drug if you know how to use it properly and I do. But I know for safety/liability reasons my LLMD might refuse. At least it's worth asking. I don't want to go through this again.
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steve1906
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Member # 16206
posted
Hi Sammy, I'm glad everything is looking good again. I hope you never have to go through that again!
Have a good night
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
I am so sorry, sammy. Maybe it is time to think port?
Take care!
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
10/17/10 update
My PICC really does hate me. The same line is completely occluded now. I can't withdraw blood or even work a little heparin in it. It worked great this morning. I'm really disappointed about this.
Posts: 5237 | From here | Registered: Nov 2007
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Are you taking either lumbrokinase or wobenzyme or some sort of systemic enzymes? Since hubby takes those I totally stopped using heparin with his PICC line. Just flush with normal saline.
He tried heparin shots, sublingual lozenges and even IV heparin in the past, but the systemic enzymes work so much better.
Personally we have been told by several nurses that using the PICC for blooddraws will shorten the life of the PICC line so we don't do that at all -- hubby could not get a blood return on his last PICC line for probably the last year or longer but it still worked fine for infusions. He had the last one in for 24 months and we only replaced it because we thought that was probably about the limit as far as how long it would hold up without the plastic starting to deteriorate.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Sammy, keep us posted. After all that and it is occluded again. Do you think there is scar tissue at end where valve is? do you think the valve is malfunctioning?
Posts: 211 | From In my house | Registered: May 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Update 10/18: I really don't know what is going on. Can you all help me troubleshoot?
I have a double lumen PICC. The red line was partially occluded on wed (unable to get blood return, slow infusions, difficult to flush). Got that line cleared on Sat. Worked great on Sat night and Sun morning. Sunday night I could not flush it or get any blood return. Still not working at 7am this morning (monday). Rechecked it at 8am, could not flush, was eventually able to withdraw blood and then was able to flush. It worked well this evening.
Now purple line is causing problems. Woke up this AM with blood backed up into the extension tubing, had both the catheter leg and extension lines clamped. How did blood creep up through the clamps? Thankfully it flushed easily (with 20ccNS) and I was able to infuse my antibiotic at 7AM. (Remember red line was not working at this time). When the infusion was done I flushed it and clamped as usual. Now tonight it is not wanting to flush or aspirate again. What is going on?
I've tried relaxing my arm on a pillow with a warm compress. I've tried walking around, moving my arms and shoulders around. I've tried changing the extension sets. I don't know what else to do.
This PICC doesn't have a valve at the end. My last one did, I had it for a year with no problems. This PICC is only about 5wks old. It is a 5Fr open ended Power PICC by bard. I use neutral pressure injection caps to prevent blood reflux into the catheter. I flush with 10cc NS and 5cc heparin after infusions or every 12hrs. I use positive pressure flush technique and clamp the lines.
And the stupid catheter leaks serous fluid from the site. Have to change the dressing every 3days. (Probably not related to the occlusion problems but it's annoying and an infection risk)
So what do you think, what am I missing? Could the catheter be too big for the blood vessel? But then why does one lumen work and the other one not? If it was kinked or malpositioned I would think that both lumen would not work.
Also, I'm taking Vitalzym systemic enzymes. It contains: Bromelain, papain, rutin, amylase, protease, lipase, amla and serrapeptase. Always take it on an empty stomach.
Please pray that God will help me. I'm trying my best but it is not enough.
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Sammy, I hate to say it, but at this point if I were you, I'd STRONGLY consider getting on coumadin prophylactic therapy ASAP (beginning first w/luvenox shots (sp?) till the former kicks in).
Is there a possibility that at this point your doc may suggest a central line? I don't know about them, if they'd be better or not, but since they go immediately into the larger veins...?
You've had so many issues with your PICCs and I am SO SO sorry to hear of what you've been through and are going through. PLEASE, as always, get to the ER if more signs of trouble like this, K?
Edited to add: I totally agree with Bea about NOT using the PICC for blood draws. That was the advise given to me by the nurses as well. Sometimes the home nurses tried to pressure me into it- guess it was "easier" for them or whatever. Really "ticked" me off.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
Doesn't the Dr. B guidelines say not to use PICC for blood draw? Maybe have another look at his guidelines.
Posts: 8430 | From Not available | Registered: Oct 2000
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I'm not using the PICC for blood draws, I go to the lab and have to get stuck for that.
I only check for blood return once per week when I change my dressing. Your supposed to check for blood return every time you access the PICC before infusing to make sure that it is functioning properly. But like you all said I don't want biofilm building up in my catheter so I don't check for blood return with each infusion or flush.
The problem is that I've been meeting resistance when I go to flush the lines. You should Never Never push against resistance. So I try to pull back to check for blood return, sometimes this will dislodge whatever is clogging the line and restore function. I've had to do this a few times this weekend.
I think that the root cause of my PICC occlusions is blood reflux into the catheter. I've been noticing blood in the line when I wake up in the morning. This shouldn't be happening when I have both the legs of the lumen and the extension sets clamped off.
I got the occluded line working this morning so I didn't call the hospital or LLMD yet. Then a few minutes ago I was talking on the phone with my mom I glanced down at my PICC and noticed blood flowing up to the clamp. I couldn't believe my eyes. So I've been watching it. The blood fills the line up to the clamp then a few seconds later most of the blood runs out of the line and it's more clear then the blood comes back.
Something is indeed wrong with this PICC, it's clamped there should be no blood flowing in and out! My LLMD's office is closed for lunch until 1:30. I'm going to call them as soon as they open. This PICC has got to go. I've had enough of it.
Thank you all for listening to my frustration. This has been so stressful. I take such good care of my PICC and it's just not working for me.
Posts: 5237 | From here | Registered: Nov 2007
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posted
So sorry. This almost sounds like a design problem, a malfunctioning device. I tried to contact the maker of my PICC when I was having problems. They passed me on to someone else who did not have the answer, so I am not sure if that route would be any use to you.
When I googled this, I found a number of hits, including this one, which does not really apply strictly to your case, but here it is anyway. Apparently this is not an uncommon problem (blood reflux):
Hope you don't mind me continuing to reply. I have had my share of PICC problems and sympathize.
Posts: 8430 | From Not available | Registered: Oct 2000
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thanks for searching for me lou
I happen to have the BD-Posiflush Heparin syringes. (Of course I had to look after reading that link) I did not know such technology existed. I assumed that all syringes would cause blood reflux if you did not use the positive pressure flush technique. Very cool invention.
I've also been a frequent visitor on iv-therapy.net for quite awhile now. I love learning, especially anything related to health and medicine. Maybe it is the geek in me
So good news for today, my PICC has been behaving. Maybe it doesn't want to be yanked out after all!
Yesterday I did alot of calling around. Called the hospital (spoke with an infusion nurse), my LLMD's office, then the hospital again (managed to get the operator to page a PICC nurse for me that time!).
No one has ever seen anything like I've described with the blood refluxing into the catheter while resting. This frequently happens when you cough or vomit, if you use the arm too much, if you let the IV run dry, if you flush and clamp improperly but not while at rest.
The PICC nurses asked a whole bunch of questions. They agreed that I was caring for it properly and didn't know why I was having problems with it. They suggested that I have it removed if it continues to have "spontaneous" blood reflux while being clamped.
Of course my nurse friends haven't seen anything like I've described either. They said it is their hospital's policy to pull PICCs if they cause any trouble.
So my plan for now is to watch and wait. It has been working well today. Maybe things will settle down. If not then I'll have to call my LLMD to let him know I need it pulled and go from there.
Oh, I also called and talked with the Bard (PICC line manufacturer) clinical nurse educator and I sent an email to the RyMed (injection cap manufacturer) nurse educator to see if they have had any customer/patient reports like this and if they have any suggestions for me.
Thank you all for your prayers and for reading through this really long post. Maybe my crazy experience will help someone else later on.
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