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» LymeNet Flash » Questions and Discussion » Medical Questions » *Update* Replacing my problem PICC

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Author Topic: *Update* Replacing my problem PICC
sammy
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**Please scroll down to post on 2/28 for update**

I've only had this PICC line for about 3mo. It's been a problem from the start. I'm wondering if I should ask my doctor to have it replaced. Here's why:

It leaks serous fluid from the insertion site. Apparently the insertion site/hole is bigger than the catheter.

Blood often refluxes up into the lines and extension tubing. I'm careful about clamping properly and this still happens. Only explanation I can figure out is that the tip might be improperly positioned. Doctors and nurses I've talked with have no idea why this is happening either.

Because of the frequent reflux I've already had 3 occlusions that needed cleared with cathflo.

I also wonder if it is positioned poorly (allowing changes in pressure?) because we always have a difficult time removing the end caps and extension sets. It is like there is some sort of suction holding them in.

I never had these problems when I had the Groshong PICC lines. This one is much different, it is a Bard Power PICC.

I don't know what to do about this. I don't want to keep the line if it is going to put me at risk for complications (like sepsis or clots). I also don't want to go through the hassle to try to get it replaced. And I really don't know if I could get my local doctor to order a replacement (my LLMD is out of state and local hospital will not accept his orders).

So what do you all think? Should I continue to deal with this one or ask for a new one?

[ 02-21-2011, 12:02 PM: Message edited by: sammy ]

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seibertneurolyme
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Do you have any idea how much longer you will be on IV's? I think that would play into my decision.

I am very surprised that you got someone to do the cathflo -- let alone 3 times. Any time hubby has had a problem they have always pulled his line and never even attempted to clear it.

They should be able to do a chest x-ray to check the position of the line (there is a magnet on the tip).

I know that in the beginning hubby had problems with his lines due to hypercoagulation. But something else someone figured out was that his line needed to be 4cm longer so that bloodflow helped keep the line clear. After that he always tells whoever is placing the line that it needs to be x centimeters long.

If you get a new line they would probably put it in the other arm. This doesn't always happen but you could request that.

If you are having problems removing the extension line then it has probably gotten wet and that causes some sort of suction lock. I know that every now and then I have to pull out the vise grips to twist off the extender I use on hubby's line.

Bea Seibert

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2young2dieMom
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I'd get it replaced. I've had a picc line for 8 months and never had any of those problems. My is one way - for drugs to go into my vein, I've never had blood coming out. My llmd says infections are more possible if blood goes thru the line.

--------------------
Dxd ALS 3/2010
Dxd cllinical Lyme 4/2010
Positive for Protomyxzoa but absolutely nothing else in Igenex

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sammy
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I feel almost silly having asked this question yesterday. I want to know what you think though because I've been thinking about it more and more often.

I don't know for sure how much longer I'll need to be on IV's. I follow up with my doctor every month and he is the one who decides what meds I need. I'm far from well so it may be awhile.

It was very difficult to get the cathflo doses. No one seems to want to give it and I don't understand why (probably because doctor's are not familiar with administering it and hospitals don't want to pay for it).

When I ordered supplies today I requested a different type of extension set. I doubt it will help but need to try something. I'm very very careful about protecting my PICC line and have not gotten my extensions wet so I don't know what is causing the excessive suction. I suspect that this may be related to whatever is causing the random but frequent blood reflux.

I've not been doing anything that would normally cause blood to reflux into the catheter (like strenuous activity, vomiting, or coughing). This happens when I'm resting at completely unpredictable times. Problem is that if I don't notice it to flush it away then it can build up inside the catheter and lead to another occlusion. The stuff that builds up in there is perfect growth medium for infection.

I think too much about potential complications.

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Rumigirl
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"Silly . . thinking too much about complications" Absolutely not! You're doing your most important job: making sure that you don't get sepsis or clots.

It does sound like you need a new line. Do you have an IV nurse that you can consult with and have them look at it for their opinion? They are the ones that understand this stuff the best, since they are the ones to deal with it all the time. Maybe a nurse you had earlier on?

Or an IV nurse from another patient that you know, or one from an infusion center. Someone you or a friend knows to be good would be best, of course.

I had serous fluid leaking from my PICC line for a while when I had one. But I didn't have all the other problems.

Uh oh! I didn't know that the extension set itself couldn't get wet! It stands to reason, though. When I had a PICC I had it covered for showers. Now with a port that is much more difficult. But I see that I should have that covered, too.

It never seems to end, does it?! Please get this taken care of as quickly as possible---although I see that there are several issues to deal with here! Let us know what happens.

Haven't you had enough to deal with? I would say so. This from someone else who seems to have unending problems with tx, also. There WILL be light at the end of the tunnel. Only we often don't know when or how!

Sending love and prayers for a good outcome.

BTW, I had to have a nurse use Cath-Flow when I had a PICC. My IV nurse knew to ask me to ask my LLMD to rx it, and the nurse used it. He was very experienced and knowledgeable.

Just think: when you get well you will know most of what you need to know to be a great IV and/or Lyme nurse!!

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mbdq
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Sammy- you are one brave soul.

I had a picc line for 8 months and only had very minor issues.

All you have been through would make me nervous, and I would want a line that seemed to be working well. I'd get it replaced if possible.

MB

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wtl
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Sammy - will a port be a possibility? When my wife had problem putting in the PICC line, her local doctor decided to go with a port.

I can't compare an apple to an apple, but in my wife's case, she has a port and never had a problem (fingers crossed), but her brother who has a PICC line is having more problem than one can speak of. I want to pat on my back saying that it is all because I am doing a better job maintaining it than her brother who cares for himself, but I think that will be a stretch.

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Rumigirl
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Yes, if you need to have the PICC removed and need to stay on IV (most likely you do need more IV, I would think), then a port would be the best solution IMO. The port has been way better for me.

The only problems are: it's harder for a family member to replace the needle and do the dressing change (it's replacing the needle that's harder), and your LLMD doesn't love rxing ports---at least as of last spring. If you could get a local doc to rx it, that would be good.

But for long term IV, it's way better in my experience. Once you have it in, it should last for many years. So even after you go off IV, it's there in case you need to go back on again later.

By the way, it is possible for a family member to learn how to do it. It's just a bit trickier, esp if something doesn't go right. There have been others who had family members do it, however.

You know, you probably have home nursing visits covered by insurance, even if they don't ok IV abx. They have to cover that if you have an IV line.

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sammy
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Thank you all.

I have discussed this issue with 4 of the hospital PICC nurses. They had not seen problems like this before (especially blood reflux). Neither have my ICU, NICU, or ER nurse friends.

Funny thing is that my grandma had seen this blood reflux issue before when she worked in a cancer center. She said she thought it was a risk to the patient's safety and asked to have those PICCs pulled and replaced. She thinks that I should have a port.

Others have also been asking why I have a PICC instead of a port. Probably the easiest answer is that I don't want to be on IV's and never thought that I'd be on them for this long. Plus my doctor does not like to prescribe IV's and I think that he will stop them as soon as he can. So port was never really an option.

I guess I've got some thinking to do. I'm not sure what doctor I should discuss this with. I'm honestly afraid that if I bring this up my doctor (my local or LLMD) may order the line removed and not replace it. I don't want my treatment stopped too soon because of fear.

Plus my insurance coverage is kinda in limbo while the one company transfers my COBRA policy to another. I have no ID card or number so I can't do anything medical right now.

Thank you all for talking me through this and for helping me to not feel so crazy.

wtl, thank you for making me laugh. Seriously though you do deserve a pat on the back for learning and taking such good care of your wife's port [Smile]

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Rumigirl
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Yikes, sammy, you are between a rock and a hard place with this! Just make sure that there is no infection.

I hope that you can get your new insurance in place soon, so you can move forward with whichever path you need to take.

As I said, if you need to have the line removed and need to continue IV, a port would be ideal.

Maybe if you could hook up with an oncologist at a cancer center, only for the purpose of rxing and overseeing the line insertion and care locally, that would work in conjunction with your LLMD. That way it would be in the hands of someone who more routinely oversees ports.

I just hooked up with an oncologist at a local cancer center for some of my port care, and he is very sympathetic and helpful. I did that, because I only have so many home nursing visits covered per year, and my main LLMD is out of state.

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keltyl
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Sammy...we have the same LD. When I did the rocephin, I had told him I wanted to do it for a year. He sort of gave me a "look".

Mine was removed after 9 1/2 months. I was doing a little better than b/f I started, but never went any farther. That could be why he stopped it.

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sammy
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*Update* 1/22/11

I finally got my insurance situation straightened out this week. It's been a difficult month for me for many reasons.

This week I began to have more PICC problems. Woke up on tuesday to find that one lumen was clogged and one was running sluggish. Notified the doctor and requested Cathflo.

Didn't recieve the Cathflo until late last night (pharmacy did not have it in stock then snow delayed delivery). So by the time I got to try the Cathflo I couldn't work any of it in. I was so upset.

I talked with the PICC line nurse at the hospital and she told me that I needed to come in. But they only see outpatients on weekdays. By monday the line will have been occluded and unusable for 7days. And ER does not handle PICCs. Learned that from experience.

Called and talked with my Grandma, an ICU and oncology nurse, and she thinks that I waited too long and that I won't be able to clear the line at this point. She thought that I could go ahead and use the sluggish line until I have my f/u LLMD appt on monday.

I have one more dose of Cathflo. Should I go ahead and try it again? What do you think?

I feel upset because despite my best efforts I've not been able to prevent problems with this PICC line. Now that it is seriously malfunctioning it will need to be pulled ASAP next week. I'm afraid that my doctor will not want to prescribe another one. I'm far from well and scared that I would only get sicker if I try to go back to orals right now.

I could really use your prayers and support.

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lou
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Sorry about this. Do you think your doc will now drop IV treatment? What are the alternatives, and would any of them work for you.....ports, bicillin, etc?
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Rumigirl
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Oh, sammy!! Is there any downside to trying the Cathflo again? Any signs of infection now? Your grandma may be right, but if there is no downside, you could try again. Then have it pulled later, if necessary.

If you do have to have it pulled, seriously consider what I mentioned above, about seeing an oncologist at a cancer center nearby to oversee and be responsible for a new port or PICC, so your LLMD may be more comfortable about your getting a new line in. That way he wouldn't have to bear the full responsibility if something went wrong.

Of course, you LLMD would be responsible for rxing the actual abx, etc., but he wouldn't have to worry about the liability for the line itself. And the oncologists rx central lines all the time, so are used to being responsible for that part.

For future reference, it would be good to have Cathflo on hand at all times, so if something happens, you aren't stuck like that. Hind sight is 20/20!!

I will pray for you. Please let us know what happens. And don't give up on getting new line and continuing IV. You need it, so be nicely persistent and proactive (about the oncologist connection, for instance). You've fought too long and hard to give up on IV. It can take a loooong time to get well.

One last thing: I know this isn't your main worry now, but I would consider being evaluated for IVIG. It might help you a lot. But first, of course, you need to solve your line problem.

PS If you do have to get a new line, and can get another dr to rx it, so your LLMD doesn't have to rx that part, get a port. It can last many years, and is easier to deal with than a PICC (not that any of this is easy!). Then you wouldn't have to worry about that line failing and getting another one rx'd down the line. I'm much happier having a port than when I had a PICC. And it will last me for years, God and the darned nurses willing! As I've said before, I wish I could have a nurse, such as you would be!

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seekhelp
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I'm sorry you're having so many issues with your PICC line. I hope your LLMD will make a good choice and you can get continued help. That must be so frustrating. Good luck at your appt Monday.
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seibertneurolyme
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Just curious as to why you have the double lumen line? I remember someone who had one years ago and they seemed to have more problems with that than a regular single line.

Bea Seibert

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feelfit
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wondering too, why the double lumen..is one used fro blood draws and one for meds?

I have always had single lumens and no problems with PICCS...also wondering if you would consider a port Sammy...

so much to contend with and consider when so ill.
I would try the cath-flo as rumigirl has said, at this point, what's to lose?

prayers up for you Sammy.

ff

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WIGGY
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I am sorry that picc is not working out - hope your

LLMD keeps the IV going.best of luck!

Let us know what happens -

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sammy
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Thank you all for sharing your thoughts and prayers. God heard them!

I was so upset yesterday. I had checked the completely clogged line in the morning to see if maybe a tiny bit of Cathflo got in to work it's magic. No luck.

I wasn't satisfied with my grandmas advice and kept thinking about it all day. As evening rolled around I couldn't resist trying again. I wouldn't give up so easy if this were happening to a patient of mine so why should I give up on myself.

So I prayed about it. And tried again. I couldn't believe my eyes! There must have been a tiny bit of Cathflo that did get in the night before and finally started to work. I was able to pull out some old clotted blood and instill a full dose of Cathflo in both lines. Let it sit all night. Pulled the med out and got excellent blood return on both lines this morning. My PICC works like new!

I am so happy and relieved [Smile] I do believe that God heard my prayers last night.

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sammy
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Now the question is how long will it keep working. This is something that I need to discuss with my doctor. But I'm a chicken.

I should ask my doctor if he thinks that I will need to be on IV long term. Or if I should stop soon (this I'm scared to ask)? And if I get well will I likely relapse and need IV's in the future? Would it be wise to get a port?

My grandma hates that I have a PICC line. She thinks that I should have had a port from the beginning. That's why I avoid discussing problems with her. Thing is I really don't want a port. But if I'm going to remain on IV's for awhile or need them in repeated doses then maybe a port would be a wise choice.

I have a double lumen PICC because that's all that my hospital uses. I have to flush both lines twice daily and rotate infusions so they both get used pretty equally. At times having a double lumen has been very helpful. Some meds are compatible so I was able to infuse 2 at the same time.

I wish Bicillin were an option for me but I already tried that and it didn't help. I would also like to not need IVIG but it is something that my doctor has suggested. I should keep it in mind. Rumigirl, have you noticed any improvements yet?

Thank you all so much for being here for me when I've needed you most.

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Rumigirl
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Oh, sammy, this is great news!!

I would hate for you to stop IV when it seems like you still need it longer. And, regretfully, unless your LLMD has softened, which I doubt, he is not favorable to ports or to very long term IV. However, I do know patients who have convinced him to keep rxing IV when they are clearly benefiting. I'd hate to rock the boat if I were you.

And, yes, the IVIG, in conjuction with the IV abx has helped me enormously! I would definitely recommend it. It was a rocky road in the beginning, but it was worth hanging in there with it. And not everyone has the migraines/menningitis that I had from it. The ER said no meningitis, and so did my neuro, but the sx sure screamed it. But that was the loading dose in the beginning. And I get horrible migraines all the time to begin with.

BUT I don't get them so much anymore, which is nothing short of a miracle. It's due to the IVIG, the ceftriaxone, and the babesia meds. Wow!

I say go for all of it: continuing on IV, IVIG (if you qualify, which I would think you would. It repairs the immune system and the neuropathy---every level of neuropathy, including autonomic. Go girl!

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annier1071
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What is IVIG? That is a new term to me? Can anyone explain it to me? thanks

--------------------
Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin.

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momlyme
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annier- I just did a google search for a definition

Intravenous Immunoglobulin (IVIG) is a plasma product used in the treatment of certain conditions related to the immune system. IVIG treatment is approved for use in people with immune deficiencies, autoimmune diseases, some inflammations, and infections.

http://www.wisegeek.com/what-is-ivig.htm

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

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sammy
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** Update 2/28 **

Well, my PICC line has clogged for the 8th time in the past 5 months. This time Cathflo is not working. I called and spoke with my local PCP this morning and he agreed to order a new PICC. Now I have to wait for Central Scheduling at the hospital to process the order and then set up the appointment.

Please pray for the nurses that will be placing it. That God will bless them and guide their hands as they place the line so that it will be positioned perfectly on the first try. That my body will accept this PICC line. That there will be no complications. That it will work well for as long as I need it.

I'm trying not to be nervous but I am.

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seekhelp
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I wish you the best of luck Sammy. I know you've been through a lot. Prayers on the way.
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Lymetoo
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I would be nervous too!!! Praying for you, sammy!

[group hug] [group hug]

I do so hope this one works as long as you need it to!

--------------------
--Lymetutu--
Opinions, not medical advice!

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sammy
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Thank you Seek and Lymetoo!
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Rumigirl
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sammy,

I'm sorry that you need a new line. But thank God that you got your PCP to rx it!! I will pray for you and the nurses placing it. Let us know when you have an appt set up, and also how it goes. We're all rooting for you!

I never ceased to be amazed by how much all of us go through, and how much grace, strength, and persistence we all show. What we go through would be inconceivable to most people, unless they have gone through something similar.

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sammy
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Thanks Rumigirl.

I'm supposed to be at the hospital at 11am, procedure is scheduled for 1pm today!

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blinkie
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Sammy, what kind of PICC did you have? I have a double lumen groshong. I had fibrin problems a lot in the past but haven't needed a cathflo for months.

I'm shocked to hear they are pulling the line for it.

My nurses at the hospital tell me that single lumens are notorious for this issue but that the double lumens are better.

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sammy
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Thank you everyone for your prayers [Smile]

Blinkie, I had a double lumen Bard PowerPICC. It was pulled because I have had a continuous problem with blood refluxing up into the lines which lead to 8 complete occlusions over 5mo. I consulted with the PICC nurses, my experienced friend nurses, the manufacturer of the PICC line, and various manufacturers of injection caps to try to find a way to solve the problem. Apparently this was not a common situation.

The PICC line nurses that I had today were excellent. I was so relieved to have them. They talked with me for about an hour before deciding what kind of PICC line would be most appropriate for me. They ended up recommending the Bard PowerPICC Solo. It was a product that they had good experience with but the hospital did not currently have in stock.

They called up their local Bard rep who ended up driving to a different hospital over an hour away to get this catheter for me. Once we got the PICC everything went well with the insertion.

It was a long day but overall a good day. I'm glad to be home with my new PICC.

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lou
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Good job. You certainly had to work hard for this result, and got some much needed help. Hope things go better for you now.
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