First PICC line ever -- panicking

[welshwitch]

Hi all,

I guess it had to happen sooner or later. The flu bug got me and hit my lung function enough that my doc is ordering a PICC line. (Also, I feel like garbage). I am completely overwhelmed by this. A few Q's:

*Can you still work when you have a PICC line?

*Can you cover it up or can it be hidden?

*How long does it last?

*Is this the beginning of the end for me? I've always had PFT's over 100%.

Thanks all. Really panicking but I know lots of people on here have experience with this and it's not the end of the world.

 

[believingjesus]

My son had a pic line in 2007 while still in highschool. He would wrap it in gauze and wear a shirt with long sleeves. Most people didn't know but his work at the time did but they just cared about him. It was not a problem. I'm sorry you got the flu! I hope you get better soon.

 

[jshet]

My son had s picc before his port. He needed it or a couple months, but i think they can last for about 3 before needing removed or replaced. Not sure about placing since my son was sedated becsuse he would have flipped out, but when they took his out, it was no big deal, no pain either. Showering was the toughest for us because you can get it wet. Overall, it was a good experience.
as far as the begining of the end for you, i think you are going to be just fine. A little set back is all. Your lung function is great, and you seem like a fighter and willing to be totally compliant with your treatment plan.
Dont look at the picc as a negative. Try to see it as a temporary need to prevent long term problems. Please let us know how it goes. Good luck, and get well soon.

 

[nmw0615]

I've had so many PICC lines, I've lost count. Working isn't a problem. I was told to carry on with normal activity (as tolerated by how I felt), and the only restriction I had was to not lift anything above 30lbs. It cannot get wet, so the area must be wrapped for showers, and any other activities related to getting into water are a no-go.

It can easily be hidden under a long sleeve. I found it to be cumbersome, however, and preferred to just wrap it with coban. It made access and use easier during the day, but made sure the tubing was secure.

My last PICC line lasted 4 months. It could have continued being used, but I had a port placed in November of 2013 and switched to using it instead of PICC.

I don't think it has to be the beginning of the end. I had a PICC line when I was 13 for my first ever tune-up. It was other reasons that caused my decline. My lung function continued to be above 110% until I had the most diseased portion of my lung removed when I was 18.

I know this is easier said than done, but try not to worry too much. They're pretty routine. The tape covering the PICC site was always the worst for me. My skin was never a fan of being covered constantly for weeks on end. Everything else became easy and routine.

 

[stephen]

Welshwitch,

It’ easy for me to say now, but getting a PICC line turned out not to be a big deal. From my experiences, it was “scary” only the first time. After that, it was no big nothing.

I always had the lines installed in a hospital interventional radiology facility. The whole process takes less than 30 minutes, with the majority of the time spent on preparation.

Some “installers” use a holding clamp that is tapped to your skin. Others prefer the type that is stitched to your arm. I’ve had both, and really don’t have a preference. Maybe I felt the stitched type was held more firmly in place, but there were no problems with either type.

For me, the most inconvenient aspect of having the PICC line was taking a shower since it needs to be kept dry. I highly recommend getting a protective shield that is made for that purpose. There are various types. , Some are specifically made for PICC lines and others are made for arm casts. For some reason I always used an arm cast protector cuff.

The other thing I was uncomfortable with was using the syringes to inject solutions into the line to flush it before and after each type of antibiotic was infused. For some reason this made me feel queasy.

Also, I was under the impression that any air bubble that went into the line, no matter how small, would cause major problem. This turned out not to be true, but it took some time to accept this

To answer some of your questions:

The PICCs never stopped me from working, although hard physical work and heavy lifting should be avoided. I used the home pump infusion balls which allowed me to even drive while doing infusions.

The line does not have to show. I used the top part of a cut off white sock to cover the insertion area and tubing. If you wear a shirt that goes down to your elbow, everything can be hidden. I got comfortable enough so that the visible sock covering did not bother me.

The line can last for months. Dressings need to be changed regularly. This was done in my house by a home care nurse. The same nurse was also the one who removed the line at the end of treatments. After cutting the two stitches, or removing the tape, the lines were easily pulled out. I kept most of the lines as mementos.

This in not likely “the beginning of the end” for you. It’s been almost two years since my last PICC line, probably because of Kalydeco. With an FEV1 of over 100% at the age of 35, you hopefully have a lot to look forward to. (My FEV1 is well under 50% and I have no complaints.)

[FONT=&quot]Hoping you get well soon. [/FONT]

 

[Oboe]

The tape covering the PICC site was always the worst for me.

This. They give you a numbing agent when putting it in, so all you feel is the needle, the initial burn of the lidocaine, and then the pressure of them pushing against your arm for about 10 minutes. Dressing changes are literally the worst part. Doesn't help that I'm a hairy fellow.

Good luck, feel better.

 

[welshwitch]

Thanks all. Shed lots of tears today, worrying. Really helps to have support.

<3

 

[ethan508]

I've not had a PICC before either and that same thought freaks me out sometimes, too. Let us know how it goes. Hope you get feeling better soon.

 

[triples15]

Hi all,

I guess it had to happen sooner or later. The flu bug got me and hit my lung function enough that my doc is ordering a PICC line. (Also, I feel like garbage). I am completely overwhelmed by this. A few Q's:

*Can you still work when you have a PICC line?

*Can you cover it up or can it be hidden?

*How long does it last?

*Is this the beginning of the end for me? I've always had PFT's over 100%.

Thanks all. Really panicking but I know lots of people on here have experience with this and it's not the end of the world.

Hey Friend!

Sorry to hear you're feeling lousy. I can imagine how scary and overwhelming this must be needing your first PICC line at 35. Hoping I can add some words to ease your mind a bit as others have done.

First things first, if you are feeling nervous, do NOT hesitate to ask for something for your nerves! They can and will give you something before getting started if you request it. I've never personally asked for anything, but I know LOTS of CFers who do. I think usually it's oral xanax or ativan. This might help because the more nervous you are, the more tense you become (obviously), and it makes it harder for them to get the line in. They always tell me to relax, take a deep breath, etc. for that reason. As a previous poster mentioned, I always have mine done in Interventional Radiology now, but this is only because my veins are shot from multiple PICCS, so they can no longer get them in without the help of xray/fluoroscopy. My last couple have been smooth and the actual insertion has taken 5-10 minutes. As mentioned above, the prep and clean up take longer. Either way they will numb you with a tiny needle of lidocaine and that's about all that you should really feel. On occasion I've had to have a couple lidocaine injections, but usually one does the trick. You will feel a little pressure and be able to tell they are doing something, but it should not be painful. Your arm will probably be a little sore after the fact, when it lidocaine wears off. That's normal, so don't be alarmed. Most PICCS I've had after day 1 or 2 I can hardly tell they're there.

Yes, you can still work. Although, since you are already feeling crummy, I'd suggest planning to stay home at least the first few days if possible. I always start to feel WORSE after day 1-2 on IVs. They hit me, and I'm like, UGH. More tired, sometimes tummy trouble, etc. Also, start some probiotics right away, as I ALWAYS get yeast infection with IVs, and otherwise never have them (sorry guys). Normally after a few days to a week I start to feel better and try to get back into the swing of things. The last 2 rounds of IVs I've had have been after Maya was born and I've just gone about my normal business regarding lifting her, caring for her, etc. They say no more than ten pounds on the arm the PICC is in, but honestly I think that's pretty precautionary. So yes, you can work, but try to take it easy and focus on getting better!

Yes, you can keep it hidden. I run around all over with PICCS and no one has a clue it is there. Depending on how high on you arm they place it, you could even wear just a 3/4 length sleeve top and it would be hidden. I recommend asking the home health company for some Coban. It's a roll of bandage type stuff that sticks to itself. I always wrap some coban around my PICC site to keep my tubing etc. in place. This will be especially helpful if you've got the long extender tubing on so that you can self-administer your meds. Otherwise they just sort of dangle!

As others have said PICCS can last months. You won't need it that long though. I'm guessing since this is your first rodeo 2 weeks will knock everything back!!

NO it is not the beginning of the end for you. Yep, I said it. Lol. This round of IVs could very well knock everything back and you may not need IVs again for years! I think you will feel so much better when you're done and you'll be glad you did it. Stop that lung damage in it's tracks!!

Good luck, I'll be thinking of you and trying to send you some good juju.

Please let us know how it goes.

Take Care,

Autumn

PS. Hydrate, hydrate, hydrate. Probably goes without saying, but helps beef up those veins for a hopefully easier insertion!

 

[cfgf28]

My fiance has only had 3 picc lines, he has one of the same mutations as you. So he has pretty good lung function. The drugs they give him have always taken him from pfts in the 70s back to at least 100. He went 5 years from the first to the second then about 2 years between 2nd and third. He's always been inpatient for the duration of a tune up though so he's never had to go to work with one. And he's never gone longer than 1 week with the picc in. I think it freaks me out more than him at this point. They keep him inpatient, and pretty much don't let him leave his room, vest every 4 hours, iv meds every 8. His tune ups are always do to a combo of weight loss and and pfts going down. He always manages to go up about 20 points on his pfts in a couple days, sometimes even just a few treatments, and gains 5 pounds in that week. It's not the beginning of the end, but it could be the beginning of having tune ups every couple years...

 

[Jennyvb17]

For showering I use seran wrap and medical tape. Just wrap the arm upend tape the top and bottom. You kinda stand funny in the shower to keep the arm out from under direct water.

My home care always offers different types of wraps to use to cover up the arm.

I'm always a bit nervous for placement and it always goes pretty well. Those guys know what they are doing. Just keep breathing. I feel like thinking about that always helps me

 

[MichaelL]

I've had a lot of PICC lines over the years and have had one in my arm for the past four years. My comments are going to be similar to the ones above, but I just wanted to chime in as well. If you're well enough, you should definitely be able to work with a PICC line. Long sleeve or half-sleeve shirts should cover it entirely. I have switched to wearing baseball shirts for casual wear since they cover the line. I do go out in short sleeve shirts sometimes in the summer as I've gotten more comfortable with having a PICC line.

PICC lines can vary on how long they last. They used to generally last about four months for me, although for the last year they've only been lasting about two months. My home care nurse mentioned he has patients who have had the same line for years. How long they last will depend on your body, the types of meds you're running through it and how well it's flushed/maintained.

I was really freaked out the first time I got a PICC. Make sure they know you have CF as I've been told that our veins can be trickier than other people's. I've had great experiences with radiology technicians as well as doctors. I had one bad experience with a resident, but I don't think he had done many PICC before. Once they give you the numbing agent, you won't feel much. After the numbness wears off, I am usually sore for the next 24 hours, but ibuprofen should take care of that. If for some reason you need to replace the PICC, they can switch it over a wire so they don't have to do a new insertion.

I agree showering is one of the biggest inconveniences of having a PICC. I use the Dry-Pro line protector to shower http://drycorp.com/content/picc-line-protector-information/index.html You can order them from Amazon, but make sure you carefully measure your arm to get the right size. This has made living with a PICC much easier.

I would not view this as the beginning of the end. Sometimes we just need IV antibiotics to get us back on track. Your lung function is much better than mine was when I was your age.

Good luck -- I hope they can get you back on track quickly.

 

[TreasureGoddess]

My son has PICC lines at least 3 times a year now and has had them since he was a 3 month old baby about once a year (he's 15 now and a Picc line pro). They still freak him out a little bit waiting for it to be placed, but we request ativan and ask to have it done in the IR (instead of on the hospital floor) and he always says it was no big deal and wonders why he was stressed. He is a total pro and can do almost anything after it's been placed, just no heavy lifting. I asked him his opinions of things that can help and he said for sure to ask for the relaxation drugs beforehand (ativan), and also heat packs can help in the first few hours after if you have sore spots on your arm. You also want to MOVE that arm and don't keep it held stiffly immobile as that will cause cramps and soreness.

My knitter friends make up a bunch of Picc Line Covers (knitted tubes that you can slip over the picc insertion point. This helps keep the little connections from dangling and getting caught on something. It also covers it up so just looks like he's wearing a longer sleeve on one side. If you'd like me to send you one, PM me your mailing address and I'll pop one in the mail tomorrow morning. Joe also loves that tape-type stuff that sticks to itself and not to you...it was mentioned in an earlier reply, I can't remember the name.

Also totally not the beginning of the end, my dear. You will feel better quickly and probably only have the picc for a week or two. Once it's there the only issues are bathing/showering, which can be done with some saran wrap, tape and washing yourself with the other hand/arm. Once in a while you just need some extra help with IV meds and/or fluids. This is the beginning of getting you healthier to keep on keepin' on. HUGS!!

 

[brad.johns]

I am a teacher. I will usually get an infection that requires a PICC about once a year. When I do, I just cover the picc with a sleeve of some sort and go about my daily routine. When it is time for me to do my IV, I take off the sleeve and start my IV. You should not have any problems unless what you do requires a lot of physical activity.

 

[Jeana_Lynn]

First off, this is not the beginning of the end. I definitely can remember feeling like that over different aspects of CF. I have had countless picc lines from around 2001-2012 when I finally got a port. And I've had that for three years. This is just another one of those things we eventually get used to. As far as for working, I would get the pic placed in the hospital, staying for a few days to a week depending on how sick I was, and then be back working. sometimes I had my picc line covered and sometimes it was exposed. I taught at a middle school and a number of times explained what it was for my students. No one at my work had a problem with it. And it did not interfere with anything that I had to do. Showering was the only time that it seemed to get in the way. Cover it well. Hope you are feeling better soon! ?

 

[jamest]

PICC lines are the best. Regular IVs close up on me in a matter of hours, I've never needed to have a PICC replaced. No real limits on activity, I suspect if I ever felt there were, it may have been psychosomatic. For showering, find the sticky saran wrap, it keeps your arm much dryer - put paper towel between your PICC dress and the wrap so they don't get stuck together.

Oh yeah, when you flush it with saline, you may get a taste/smell with it, or with your abx. Totally normal.

Last time I had a PICC, they did a real-time Xray to double check placement. I could actually see my lungs inflate and deflate, they literally look like a brown paper bag when someone is hyperventilating, I got a big kick out of that. I do wonder how many rads I was exposed to, of course...

 

[4hats]

I had my first PICC line in January. They put it in while I was in the hospital for 5 days. I had it in for two weeks and then had it removed once I finished my IV course. I did not know what to expect, but looking back it was not too bad. I went to work with it. The worst part was the side-effects from the antibiotic they gave me. I would recommend that you ask the nurse who will change your dressing to do so gently, especially the first time. I would also recommend lying down as she does so. Taking the PICC line out was very easy and was done at my home. I too would recommend you buy a plastic sleeve that you can tape at the ends in the shower. Showering was the most cumbersome part for me. But I got used to it. I hope all goes well for you!

 

[Jennyvb17]

Oh yeah- you gotta remove that dressing yourself. That can be the worst part, but if you do it yourself it doesn't hurt as bad. Glove up and get in there ( with nurse supervision of course)

 

[triples15]

Hey, just curious how it's going? Did you get your PICC? I hope everything is going well and you're on the mend.

Autumn

 

[welshwitch]

I did, thanks! Feeling MUCH better. The hardest part was the "maybe this is my new normal" thoughts that go through my head. But, this is probably just a bump in the road. I have to have it for one more week and then hopefully bye bye PICC! Also, the med schedule is exhausting. 4 infusions per day. But I've gotten the hang of it and thankful to be feeling better. The sudden illness leading up to this (had never been so sick before) was the scariest part.

Thanks for the support, all