To get a picc or not..??

My doctor is recommending a picc. Leaving it up to me. Decisions decisions. ...

What kind of questions should i be asking myself?

Yes that does help! I don't want to give up showers.. I wonder if the covers work well enough?

He said I'd probably have it for a year. That was his best guess anyway. This will be my third week on iv rocephin through a hep lock. It doesn't really bother me. I wish I could just keep doing it this way!

The cost where I'm at is 1200 bucks for placement but I'm thinking we can get my insurance to cover it. I have to pay for the rocephin cash as it is right now.

Also my mother in law does wound care and was a nurse so she's willing to do my dressing changes for me.

The financial part I'm choosing not to worry about it. It will be a strain of course.. but my health is worth it.

I worry more about the risks involved I guess. I have a young son and I worry about that too.

Can you use your arm like normal or do you have to like... not pick stuff up?

I had a PICC line for 6 months, rocephin then vancomycin. It worked for me: my brain came back and I recovered physically to about 80%. It meant that I could go back to work and do a some "normal people" things again. Bear in mind I was pretty much housebound with the physical symptoms and Lyme brain had shave off at least 40 IQ points.

I had some minor discomfort for the first few weeks (probably due to the the three attempts it took to get the insertion done).

I definitely second the drypro sleeve recommendation for shower/bath. Yes, it is a pain in the butt to deal with this and I cannot tell you how happy I was when I could finally just step in to the shower instead of tuck up the leads under the PICC sock, wrap a folded dish towel over the dressing site, tape in place, ease the drypro sleeve over everything without putting too much pressure on the insertion site, use the pump to suck out all the air. Unfortunately, I was sort of between sleeve sizes so had to go this route, but I tried 3 or 4 other methods/products and this worked the best. You may be lucky and find a perfect fit.

I only had one incident with the line, towards the end when I was feeling much better, I forgot and lifted a 30 lb tub of cat litter with the PICC arm and had a little bleeding. Nurse came out the next day and changed the dressing, no big deal.

Like Iheartx, I was fortunate that my insurance covered the full cost (thank you, Highmark BCBS, sincerely, thank you.) But I was prepared to pull money from retirement accounts if necessary because, as you said yourself, I believed that getting my health back was worth whatever it took.

Feel free to come back with more questions about the PICC Experience

You mean the actual insertion? Not much at all. Not as bad as having dental work done.

You lie on a table under a scanning device and get a local anesthetic to numb your your arm. The doctor makes a small cut to find a vein and inserts the line, watching the progress of the line on the monitor. When the line is in place, I think there are a couple of stitches taken to hold the line in place, then they tape everything up and then you get your first IV there to make sure there are no reactions/complications.

Mostly it was boring, with the added pleasure of being in a hospital and trying to avoid touch anything.

I had a PICC for 3 months.

Placing the PICC was really nothing at all. I could choose between being lightly sedated or not. I chose not to be. I think they assess at place if someone is calm or not. I was very calm and laughing.

The vascular surgeon explained everything, nurses were very nice. All joking all the time. They put me in the OR, with one arm stretched out on a board, desinfected my chest, and my whole arm. Looked where my veins were with the ultrasound.
A local anaesthetic, very local, I could still feel the rest of my arm. Put in the line and secured it with a statlock (no stitches, but a special PICC adhesive).
Felt a little tender first 2 days, but not that bad that I was restricted in moving around.

I have had arrhythmia for about 20yrs now, which got suddenly much worse after placing the PICC. Had to go to the ER in the evening, where the surgeon withdrew the line just an inch. Apparently it was irritating my heart.

I had no issues with it during the 3 months, but then got arrhythmia again and he decided to take it out. He just put his thumb where it was inserted and drew it out. Didn't hurt at all, was just longer than I thought.

For showering: I used to put cling film around my whole upper arm (really thight), and hold it up a bit, just to be sure. It never got wet.

Marie

Oh also I never had the cover thing, I tried to get one at first but then a friend that works at Ned supply said to just to wrap it, the Glad press and seal works really well because it sticks to you and to itself really well but it looses it stick to your skin when you sweat and I was detox bathing with it on but I was sweating so much under it I decided to try without it and it was better but still had it covered with cloth.
I also cut some socks to cover it, I like those better then the stretchy things they give from Med supply.
I learned how to turn my body and dunk my head to wash with my right arm in the air.
I am looking forward to a shower though and playing in the water again.

Iheartx

Hi IHL

You've had great input by several posters here so not sure I can offer much more but Traveler suggested I might be able to provide a little context for other options:

Since you've been told you'll be on the IV for a year, I am curious if you and your LLMD discussed an IV port in lieu of a PICC? Just seems a long time for a PICC, which is more prone to issues than a port and you should be aware of that.

However, the port has clear disadvantages as well:
Mine cost $27k. Insurance covered all but $600, so I was insanely lucky.
Also, I've had a ton of problems with mine:
- whether due to the lyme, I don't know, but the tissues surrounding the port are supposed to heal within a couple of weeks and grow a "pocket" to keep the port in place, mine did not and 2 months after the installation I was still experiencing a lot of pain and swelling that of course, everyone told me was in my head.
- also, because the tissues around the port would not heal, and because I was probably too active right after installation, the port drifted up towards my shoulder about an inch and half, which made the catheter shift too far down into my heart.
- I'm pretty sure my surgeon installed a catheter that is too long, so once it shifted too far down into the heart, it caused multiple problems: it agitated the heart and gave me major palpitations, trouble breathing, chest pain. I eventually figured out that it was positional and as long as I avoided sitting or lying in certain positions, the heart issues went away (for the most part);
- and my nurses also had a tough time accessing me - partly due to all the swellng but partly due to their inexperience, which I'm really frustrated about.

Two benefits to the port: once a week the nurse comes to punch an IV needle through my flesh and into the port, then she covers it with a big bandage and there is a catheter sticking out of it and I screw the infusion syringes into it. So while I have the needle in (I started doing my infusions 5 days a wk and now I'm at 4) I cannot get it wet and it is nearly impossible to make it waterproof with any of the covers. So, no showers. After my last infusion of the week, I can take the needle out myself and go back to normal including showers, swimming, sweating.

Two problems with this:
The home health nurses are very nice and I think they are qualified nurses, but I have not been impressed with about 80% of them. They send a different one each wk it seems and it was like starting over and over and over each time with the dozen or so things we were trying to trouble shoot the problems every one of them had accessing me.

And, I was highly allergic to the bandages. I have to be very careful not to allow the sun to hit them or I will beak out into an insanely itchy and burning rash and the nurse has to come back and redo my access.

So, I guess you weigh those issues against the inconveniences and other benefits of the PICC. ;)

-p

Post Edited (Pirouette) : 7/23/2015 10:29:48 PM (GMT-6)

Pirouette,

I had a port a long time ago, for chemo, and wasn't impressed either.

The thing was supposed to stay in for 3 years, but they took it out after only one year. It would change position and turn over all the time (it was 'on' a rib and turned back and forth all the time), couldn't lay on that side cause it hurt.
It clogged all the time, a real hassle for the very experienced nurses to unclog the thing each and every time (painful too).

I know that a lot of patients have good experiences with ports, but mine wasn't a good one...
I think it was even cursed i woke up during the anaesthesia when they placed it... Not able to move, but feeling everything.
I remember they gave it home with me in a little jar when they took it out. I never wanted to look at it. Little cursed thing LOL

Pirouette

The first years after that, I thought 'don't be a wimp, you dreamt it', but at the hospital, they admitted something went wrong.
I read about Lyme and anaesthesia too, many have had problems.

I think Traveler had something similar happen to her if I remember well. They just can't get me to sleep easely, I tell them now, it's in my files. It's even a problem at the dentist's... Hence my dentist's phobia: everytime they drill it hurts, then they have to give me extra...