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» LymeNet Flash » Questions and Discussion » Medical Questions » picc next week - scared to death

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Author Topic: picc next week - scared to death
SteveInMinnesota
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I have reluctantly agreed to a picc line inserted next week after 3 months of oral antibiotics. I have to get well, but the idea of having something intentially inserted into me that close to my heart just scares the living daylights out of me.

Can people tell me about their experiences with a picc line? What can and can't you do? What should I be concerned with? Any input would be appreciated.


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Foggy
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I was fearful as well but my LLMD gave me an Rx for Ativan and it was no biggie. It was over before I knew it and once my arm was numb, I didn't feel it.

It seems akward but after a few days I got used to it. Showering was a challenge but Saran Wrap kept me dry for 3 months of daily showers. I also didn't lift anything heavier than a quart of milk, to the chagrin of my Pooch.

Opsite PICC dressing and the paper tape solved any skin allergy problems I had at the onset. You can discuss these issues with the nurse who does your dressing changes or LLMD. The chance to get well is worth the transient discomfort.



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arg82
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Hi Steve,

PICC lines seems really scary, but they're actually not that bad. It takes a little while to get used to it and sometimes it's kind of cumbersome, but overall it's pretty easy to adjust to.

When you have it put in (are you going to the hospital to have it inserted?) they will probably numb your arm where they're going to insert the line, then insert it with a needle (I don't know all the details because I wasn't watching when I had mine put in, my head was turned the other way). Then they'll take an x-ray to see that it's placed in the right place near your heart. They will either stitch it in place (there's a little butterfly part where the stitches can go) or they'll put a hep lock (I think that's what it's called) that holds it in place. Then they put a dressing over it to keep it sterile.

They'll probably keep you there for a little while afterwards, but I'm not sure how long is standard. I had an allergic reaction to a dye they used because my veins are so bad so they kept me there for a few hours afterwards.

Once it's in, you may have some pain for a few days. Some people have bad pain, some people don't have any (I had very little). After a week or so, you'll start to get used to it. The hardest part is showering, and that can be done with some creativity. I've heard that Saran Press 'N Seal is very good for this.

I used a Xerosox that's like a big rubber mitten that goes up your arm, above where the line is. Then you pump the air out of it with a little pump built inside it and you have an airtight seal. I used it to go swimming during the summer I had my PICC line and it worked really well. The only problem is that the top can be kind of tight, so it can be uncomfortable to wear it for very long at a time.

You have to be careful not to lift too much with the arm you have the line in. I think 5 lbs. is the limit. Other than that, there's not a lot of restriction. Just can't get it wet.

I hope this helps you! It's a scary thing to think about, but once it's done it gets to feel really normal and you almost forget it's there.

--Annie

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NP40
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My son has had a PICC for over 3 months. No problems whatsoever. He said it was a piece of cake when they put it in. They numb the arm, and thread it through the vein. He watched it on the monitor.

He doesn't even mention it anymore, he's so used to it.


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MaryAnne
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I too am relieved to read your replies to Steve's question about the picc line, because I was just dx'd with Lyme Diesase this week and will have my line inserted on Monday so that I can begin the three months of Rocephin infusions. It IS a bit frightening!! Mine will be put in here at home by a home health nurse and I'll admit, I'd feel a bit easier if it were being done in a hospital, I think. My daughter in law is an ER nurse and I've asked here to be here for moral support!
I'm especially glad to know about not lifting heavy weights and also about the possibilty that I can actually continue swimming, because one of the things I am going to miss is working out with some things at the gym.

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henson2
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Hi,

I am NOT the most stoic person in the world (when I suffer everyone knows about it - LOL!) but the picc line was so much easier than I expected. Truly, it was not bad at all. I would much rather have a picc inserted than have a filling at the dentist!

Yes, they numbed my arm, had me lying down w. an xray machine over me so they could watch how they threaded in the line. I also took an ativan before the procedure and felt calm and was joking with the staff the whole time.

I actually had no pain. Nothing. And I'm telling you, I am not stoic! LOL!

The worst part was that it became a little awkward later when I wanted to lift something, and showers were a challenge. I would use saran wrap and just work at trying to keep it dry.

Also, I didn't feel it at all when it was in. No sensation of it. Sometimes you can feel the abx go in, like they are a little cold (the Claforan was supposed to be refrigerated but then taken out).... but from the line itself, nothing.

Please be reassured. You will ace this!


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henson2
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PS

Someone told me ahead of time to drink a lot of water beforehand. I am not sure why: I think it increases blood volume and makes the veins much easier to thread through?

Does anyone else remember being told this?

It must have worked because it was an easy procedure.

Now about the dentist.....


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arg82
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Drinking a lot of water beforehand is supposed to help keep blood vessels large so it's easier to find them and thread the line through them.

I also wanted to add a little disclaimer about my mentioning swimming with a PICC. This isn't necessarily a GOOD thing to do as there is ALWAYS a risk that the line could get wet and then get infected from the bacteria in the water. Once I got my Xerosox and got used to using it in the shower, I decided to try swimming with it and I was comfortable doing this and didn't have a problem. But please don't take my experience to mean that it's okay to swim with a PICC line. I never swam for very long at a time (10 minutes at the most probably) and didn't do a lot of actual swimming because I didn't want to overuse that arm, but it was nice to be able to get into the water for a little while while on vacation.

--Annie

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MaryAnne
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Thank you all for your replies! And Annie, many thanks for the info about the Xerosox. I do know that swimming regularly while the picc line is in would not be a good idea, but like you, I'd love to be able to take a quick dip in the pool now and then when the weather gets warmer. Besides, my newest worry (I'm thinking of new questions and concerns all the time...LOL!!!) is how am I going to shower and wash hair for the next three months! And then, can I still manage using my blow dryer and curling iron?!! Bad enough to have to endure treatment for Lyme, but far worse to go around looking like a wreck!!!
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arg82
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I understand the concerns about showering and getting yourself to look good while dealing with the line. Showering definitely takes a little time to get used to, but after a while it gets to be just second nature. You can either use saran wrap (as others have suggested), Glad Press 'N Seal (which I've heard works pretty well), or you can get a Xerosox and use it in the shower. That makes it so the hand of the arm the line is in is covered (it's a mitten type thing) but it worked pretty well for me - I just had to learn to wash my hair one-handed! And I think if you get creative you should be able to use your blow dryer and curling iron, but it might take a lot longer than when you could use both hands normally.

Hope this helps. What day do you have the line put in?

--Annie

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hiker53
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I am a wimp and the PICC line insertion did not hurt!

To shower, I buy gynecological vet gloves that go up to the shoulder and rubber band it. It keeps it very dry and is a very cheap method. You can get them at Farm and Fleet or some similar store.

The nurse told me not use xerosox where you pump the air out, because the suction has actually pulled out the picc line of several of her patients.

Good luck!


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marblenose
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What hurt me most was the stitches they put on my arm to hold the line in place. I told them upfront my pain threshhold was incredibly low.
Other than that It was a breeze and everyoe involved were very sweet. God luck!
Blessings,
Marblenose

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Gace24
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Hi,
Just want to comment on the swimming issue. Being a nurse and have had PICCS and working in the department that insert them and ports, one should really avoid swimming until the PICC is out.

The one issue is what Annie said, if the dressing gets wet, it is a prime source for bacteria who like wet warm enviornments to grow.

Also you cannot control what you are exposed to in the gym pool. You might take a shower before getting in, but not everyone does. Even though the water is chlorinated, it doesn't kill all germs. People have foot fungus, infections etc.

A lake might be even worse, they definately have some fecal content and other sorts of bacteria/protozoa.

Besides with swimming you might be overusing your arm with the PICC causing more problems-migration of the PICC, excessive rubbing inside the vein causing irritation and maybe phlebitis.

I know it is hard, I had my PICCS in the summer and love the lake and ocean. There are devices you can use to keep it dry, but IMO the risk of possible secondary infection is not worth it.

Steve,
If you have the PICC placed in a hospital, they will do a CXR after insertion to make sure the line is not too close to your heart. I found that a cast cover from Brown Medical called Seal-Tight worked wonders for taking shower and keeping the PICC dry. they come in different sizes. Can get them in a surgical supply place.
Good Luck,
Grace


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tikbit
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[Steve, I have had mine in for 14 months and I can do everything. It has caused no ill effects at all.

It doesn't hurt and it didn't hurt when they put it in. It did hurt for a few days, I think maybe a couple of weeks afterwards.

It irritated my vein and I had to take Ibuprofen for it, and the stitches did hurt for a while.

Two really important issues:

1. keep it clean and dry. Change your dressing at least twice a week and keep a sterile field. Don't! contaminate your gloves while your cleaning. Just be particular and careful and clean. A staff infection is no fun.

You want have anything to worry about as long as you listen and do exactly as they tell you don't skip any steps or get lazy. I truly believe that's when people get infections.


2. Don't let anyone take your blood pressure in the arm you have the pic in, and don't you accidentally do it at Wal-Mart either.

The pic line will explode and it will hurt like &*(^ and they will have to cut you open to get it out of your vein. Doesn't sound like fun.

No one told me about this and I almost did it. Can you imagine. I love mine. Look at it this way at least now you have a visible sign of how bad you feel and you don't have to explain how sick you are all the time.


Also instead of that stupid mesh sock they give you to hold the line in place that doesn't work, I use the stretch bandage by Coach.

Its in the sports injury section at walmart. Get the black one, the tan color isn't near as good and doesn't stick as well. And don't put it on to tight.good luck


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cootiegirl
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This post has been really helpful for me as well. My lyme teen is going to be getting a picc as well. Not to change the subject, but can anyone tell me about the infusion process? I know it will be covered by the llmd once we get underway, but until then it would be good to know what amount of time it will entail. Do people infuse once a day? Twice a day? How long does it take?

Any general info is greatly appreciated....
cootiegirl


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arg82
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Grace,

I completely understand about the swimming concerns. I wouldn't have done it unless I felt comfortable with it and was used to the Xerosox and knew how it worked for me. And I never did "real" swimming where I was using my arm. This was a personal decision and I'm not saying that everyone should do it.

Tikbit,

Normally the dressing only needs to be changed once a week. Some nursing companies may routinely do it more often than that, but it's not standard. I know that if I had the dressing changed more than once a week, it would only irritate my skin a lot more (the alcohol dries it out and having the dressing put on and taken off too often can be rough). But, as I said, it depends on the nursing company. I was told that my dressing could go as long as 10 days without being changed in a pinch, but every 7 days is recommended.

Cootiegirl,

You're asking good questions, but they can't be answered without knowing what medicine your teen will be going on. Each medicine has different dosage and infusion schedules. Rocephin is the most common IV antibiotic used for Lyme and it can be given either once or twice a day, the infusions usually take about 20-30 minutes. Other meds are different (the only other one I've had experience with is IV Zithromax which was given once a day in about a 60 minute infusion).

--Annie

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Aligondo Bruce
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relax, everything will be fine. You should be jumping for joy. When you first get the line inserted, you will probably have some mechanical phlebitis so keep your arm warm with heat packs and in my opinion keep it moving. Don't be afraid to use your arm immediately after insertion. I'm speaking from experience on this one, trust me. Make sure you take good care of the line. After a few days it will seem like old hat and you might eventually get a little lax, but try to guard against this because you don't want to go through line after line after line until all your veins are messed up. Finally, if when they insert the line and xray you they say it's properly placed, but you feel sensations like your heart is jumping, then they've gone a tad too far and ask them to pull it out a little bit. Don't do what I did the first time which is ignore the symptom and then wait a week to get it fixed.
The bandage is guaranteed to drive you insane with its itchiness. Hopefully, your home infusion company will send you extra bandage changes so in an emergency situation you can have your wife change the bandage for you but make sure you're aseptic when you do this because if the line gets infected they have to pull it out.
If you take care of your line, and your response to medication is properly monitored by your doctor including liver enzymes, then there is really nothing to worry about, and everything to look forward to because you will soon start feeling better than ever (it may take several weeks to even months depending on how long you've been ill.)


quote:
Originally posted by SteveInMinnesota:
I have reluctantly agreed to a picc line inserted next week after 3 months of oral antibiotics. I have to get well, but the idea of having something intentially inserted into me that close to my heart just scares the living daylights out of me.

Can people tell me about their experiences with a picc line? What can and can't you do? What should I be concerned with? Any input would be appreciated.



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beachcomber
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Steve & Maryanne:

Do not be afraid. It is a relatively easy proceedure. You will definitely feel soreness in your chest for a few days after and especially around the stitches, which may bleed the frist night. Otherwise, you will hardly know it is there, escept for the tube taped to your bicep. You can cut the feet off of different colored sockes to accessorize you PICC so that it becomes a fashion statement. You will at least get some interesting looks.

Steve: Not to scare you, but my first PICC was actually touching my heart. I had to have that one removed after 3 weeks because the chest pain just got worse. This is uncommon. I might suggest that you ask the Radiologist to make sure he/she keeps the PICC shy of your heart about 3/4". That's what my nurse told me to say for my second PICC. Unfortunately, the PA who did the 2nd PICC was overly cautious and gave me a line that literally stopped at my shoulder. That one lasted 16 weeks, until my superior vena cava became irritated from the meds. What you do is watch the monitors while they are inserting so you can see just how close to the heart the line is going. It's actually kind of fascinating to watch. Speak up if you have any questions during the proceedure. Trust me, you will not feel the line.

Maryanne: I can't help but suggest that you have the line inserted in the hospital. There is no way a nurse can be sure where the line is going without radiology equipment. That said, I will venture to guess that what you are getting is in fact a "mid-line" and not a PICC line. I have had several mid-lines inserted by my nurse at her office. That live only goes about 5 inches up your arm. It still has a Heparin Flush Lock. However, you cannot draw blood from it and, these lines usually have to be moved approximately every 2 weeks. I just can't imagine that you are getting a PICC inserted at home. Glad your daugher-in -law will be there for you. Might want to ask your MD what type of line you are actually getting. BTW, the mid-line is also painless.

Bc


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LemNLyme
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Thank you so much, everyone, for your PICC tips. My teen is getting hers inserted tomorrow morning. I can help put her mind at ease. I really appreciate it!

As an aside, her LLMD told me that she was convinced that I, too, have Lyme based on my extensive history of dx such as fibromyalgia. Does anyone have an opinion as to whether I should get treated alongside my teen or wait until she is better to undergo it myself? To manage the both of us seems daunting, but I have become extra achy watching her endure her symptoms. Perhaps a mother feeling her child's pain...


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MaryAnne
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The picc line will be put in tomorrow evening (Monday).
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MaryAnne
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Oh, and yes, it will be a mid line. I'm so new to all this!
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Foggy
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Good point about the H20. The nurse who takes labs claims she can tell the hydration of one's body by looking at their veins.

Can she predict the winning lottery #s too?


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Amareo
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Hey There....

First of all, it shouldn't be as bad as what your imagining

I've had two PICC's and then got a portacath cuz I ended up needing longer term abx, and PICC's aren't really suited to go long term.

Both my PICC insertions went well. The second one was kind of scary, because the nurse couldn't find a vein, so she sent me to radiology and they used an ultrasound to find a good vein and then had like 6 technicians surrounding me making sure my arm staying in a good position, etc. lol....I actually asked for a sedative because I was nervous and they wouldn't give me one! but I was fine. It turned out fine.

What you might expect after your PICC insertion:

your upper arm, shoulder, and collarbone may feel hot and achy and maybe even extremely painful. Some veins don't like PICC's as much as others, and clamp down, and those tend to be the more painful ones. If you have lots and lots of pain, use a warm hotpack over your arm and shoulder. My second PICC was very painful, but not to the extent of taking narcotics, just tylenol as often as possible, heat, and I really didn't feel good that night.

After the initial insertion my nurses had me keep a soft measuring tape and measure my arm each day and record it, so I could tell if my arm was swelling. That might be a good idea, because if your arm swells you'll want to let your nurses or doctors know.

PICC's are an infection risk, but if you are clean and make sure your tools stay sterile, you should be okay. Theres the obvious: always scrub your hands at least 30 seconds w/soap before you do your meds, and make sure to use alcohol wipes before you insert needles or plug into your lines.

What I always did was use a bleach wipe or bleach solution and a FRESH towel on our kitchen table, then go get my supplies but not open anything, and then scrub my hands, make sure to dry on another fresh clean towel, and then open my supplies and start. So make sure you and your environment are clean before you open your sterile supplies and syringes, and you should be okay.

If you have any other questions feel free to ask and I hope I can give you any tips!

Good Luck and take care!!!
And btw, the PICC insertion is more scary than painful, and it's really not even that scary You'll do fine. They use a numbing medicine first before starting to insert the catheter, so I didn't feel a whole lot after the numbing medicine. I could feel it threading up the vein but it wasn't painful. Mostly it felt like a lot of pulling and tugging when they were inserting the catheter.

Lishka, 18

[This message has been edited by Amareo (edited 28 March 2005).]


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Amareo
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cootiegirl and lemnlyme ---

if your kids would wanna chat with another teen whose been thru the whole PICC experience, I've got email and AIM! I'm 18, I had my first PICC 2 years ago... and since then I've had another one that was for 4 months, and then now my portacath which Ive had for about a year and half.

email:

[email protected]

------------------
Lishka


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kare
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I had a picc line inserted 6 weeks ago - I was also VERY scared. It turned out to be no big deal - don't worry you'll be fine. You just want to be sure to keep it dry. Other then that, after the first week or so - you won't even know it is there. Good luck!
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beachcomber
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Very good point about keeping the area and you hands clean. My nurse could not emphasize this enough. I bought a box of latex gloves (very cheap) and used them when I did my infusions.

I saw a man walk into my nurse's office one day with his bandage hanging off and his PICC dangling. (He also did not look particularly well bathed). My nurse lit into him like the nuns I had in Catholic school when you got caught doing something sinful. She told him, in no uncertain terms, that he was to call her if his bandage EVER came loose again and read him the riot act about infection and the importance of keeping the site and his supplies sterile. She told him he could die from sepsis. The room was silent after that.

When the steam stopped coming out of her head, she took one look at my bandage and asked what the heck I had done. Yikes! The edges had curled because I had taken a sauna the day before. She didn't yell at me but begged me to please come in for a bandage change if I insisted on taking saunas, as the toxic perspiration can get trapped underneath.

So, be clean and always call your nurse if your bandage comes loose.

Bc


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Foggy
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Steve, How you doing Buddy?
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SteveInMinnesota
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Sorry, some how I got logged out of LymeNet and couldn't remember my password. I was also a little scared to even read these messages. However, I just managed to read through them and I appreciate the comments. Picc line is this week sometime. Fortunately the insurance is taking a few days to work out. Maybe they can bungle things into next week if I'm lucky.

Okay, this may be a dumb question, but am I going to be able to continue working without anyone noticing?

I will sign back on here after I have it done and let everyone know how I'm doing.

Thanks again.

BTW, I really really do not like Lime Disease.


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