Lyme Files: The PICC

I had my Peripherally Inserted Central venous Catheter (PICC) installed on my father's birthday - June 14th. I still remember coming home and him saying, "Oh no," when he saw me. We're not a big birthday celebration family but I think it was probably a pretty sh*tty day for the family as far as birthdays go.

A lot of people go the hospital or get a numbing something done. I had neither. I had apathy when I returned to Burke's office and painfully laid out on the on the exam table.

Dr. Burke spent about an hour scanning and checking both of my arms and drawing on me until he found the right vein in the crook of my arm. It was my right arm, my stronger side.

Then I felt a pinch and my whole arm was wet and warm with my blood. He pushed in some device.

I remember the nurse, Pat, with mask on and everything with her hands by her ears offering me her elbow, "do you want to grab my elbow."

No, I don't want to have to move. That's actually how exhausting life was at this point. To scream, to cry, to resist, to focus, to lift my air to grab hers was just too much work. How was I suppose to eat that day if I did that?

You have no feelings in your veins, you just feel a push against your muscles. It's a weird feeling. Not pleasant but nothing scream worthy.

Then he pulled out the thingy - whatever the guide thingy is called that helps steer the catheter. This hurt. It was like something was slicing you from the inside. I could feel this painful, dull pressure drag from my chest to my arm.

"I can't believe you didn't scream."

Yeah. I'm a trooper. It didn't hurt that much AFTER. It was almost like when you rip off a band-aid, it's never as painful as the ripping. It eventually goes away.

Years later, Burke said he numbed people.

If you are curious about what the process it - you can view a PICC install on YouTube. Here is one from Daniel Di Re and recorded by the nurses at Charles Gairdner Hospital:

Tape, dabs, all that stuff happened at my arm and I was sitting in the patient chair hooked up to an IV while Pat watched for any reactions to the IV.

"How will we know if she has a reaction?" My Mom asked. She totally had the ebby-jeebes because, like me, she hates needles and all that stuff. Now she was looking at me hooked up to an IV with this thing in my arm.

"It would have happened by now," Pat said. "What you really need now is a steak."

If it wasn't about 9pm at night, I would have perked more up at that. I do remember getting my first infusion - between the medication killing off stuff and being hydrated - it was a good feeling.

I will explain herxing later and this feeling of wonderful that. . .I'll get into this later. Since I didn't know the first thing about a PICC line, I went home and didn't shower.

I couldn't really move my arm, the muscles were sore, but, that wasn't odd for me. I once spent a whole summer in button downs with a "frozen shoulder" and tendinitis. What 17-year-old aspiring writer doesn't have issues opening doors because her joints and muscles are completely locked and frozen? Too much typing, Dr. Walker had said.

It was actually due to the Lyme.

What I Did
I went back to the doctor the next day to learn how to care for my PICC and how to administer the bags of antibiotics. I was bruising, so, the doctor did a whole scan of my arm to make sure the PICC was causing any problems or clots.

Since I was administering myself medications and having weekly blood work and bandage changes, I had to remember: wipe with alcohol cloth, Saline, Antibiotic, Saline, Heparin (SASH). Since I got all my supplies every other week, I can assure you the only item I remembered every time was antibiotic. I always had leftover Heparin. I didn’t tell anyone this – I didn’t want them to think I was, you know. . .exactly what I was, foggy, cray-cray Lymie.

I would look at my supplies and be like - wait a minute. How many of those did I have? What comes after two when you take away one? The important thing was the Heparin was the yellow one - like sunshine and like what it tasted like, salty, rotting potato chips. When these fluids pass you lungs, you get this tastes in your mouth - that's how you taste things. The best tasting was Glutathione - it tasted like sweet almonds.

This brand of Heprine was later recalled - not sure if they improved the taste.

I also used a fancy hanger to hold my bag of antibiotics - because I'm not making things up as I go along. Since I didn't have the IV pole, I just used a hanger and hung the bag on the tallest thing I could find like picture frames or in my room which was a stacking of my file cabinet, portfolio keeper and full-length mirror.

So what does  PICC line look like? And here is me a few days into treatment. Note the fancy-dancy "sock" which was medical netting. It lasted about 24 hours but kept everything from flying around. Later, I used tape. The netting was solid gold.

As you can see, I look really sick. Look at my flowing locks! Notice how the right side is wonked - because I couldn't really wash the right side of my hair. You can't get a PICC wet - so in the shower I held onto the shower rod with that hand. I'm also right handed, so, I really got to work on my ambidextrous skills.

The "sock" you see above kept everything from flying around. It's actually called"Elastic Wound Retainer Nets." They came in a box all rolled up in one piece and rationed out during bandage changes. One of them lased about 24 hours before becoming worn out. That stuff is gold!

Later I just used tape because I got greedy with my want of the sock. This Lyme ain't got time to beg for sock. Actually, later someone made these things called "PICC Me" covers and sold them. They had ducks and little green ribbons on them and stuff.

I wasn't prepared to make a fashion faux pa. If you or someone you love has a PICC, you can get covers from places like PICC Perfect or Sleek Sleeves.

Let's break down this device.

Here is the end of the PICC. That is the valve you hook up to a (needless syringe) or bag of fluid.

Here is the other end - the red dot is my blood and shows where the catheter goes into my arm and up into my shoulder/heart. The stabilizer just keeps the catheter from coming out because your body automatically pushes against this weird thing that shouldn't be there.

Fail, right? Pushing out the thing that is going to save me WHERE WERE YOU WITH THE PARASITES?!

Oh, there is also a clamp, that little plastic piece that prevents anything from flowing in and out unless you slide it to stop. . mm. .clamping.

The PICC never hurt, I don't think. I was in massive amounts of pain anyway, not sure what would make anything worse. My arm was stiff for a little. Up to about three years after the PICC was pulled, I still felt pain at the entry point and sometimes in the muscles it sat over. This is called phantom pain.

It DID itch a lot. And the Tegaderm (clear, plastic like thing over my arm) did not allow skin-to-nail itching - it was pretty strong.

When my insurance would not cover weekly bandage changes, I had to move to every-other week. Then it got real itchy and I got a skin infection. And if having a PICC wasn't odd enough, now it looked like this.

It was SUPER ITCHY where the catheter goes into my vein. That one spot was like my brain telling me to itch it out.

Otherwise, it wasn't a big deal. Other than if anything got into the valve, it would go right into my blood and cause sepsis. A couple Lymies got sepsis and had their lines pulled or ended up in the ICU.

They don't call this the little white tube of death for nothing.

The Imitation of Normal
The day after the install - I attended a company picnic. I hadn't showered - otherwise, I hardly look sick at all. I know I was happy - I was happy something was wrong with me and I was getting treatment. And I was around some pretty cool people.