This post will be bits and pieces from my original post on September 12, 2008.
Upon being diagnosed in 2007, people asked me if I would be needing a PICC Line. I knew a little bit about central lines, but did not know what they had to do with Lyme Disease. Very quickly, I discovered that many people with Chronic Lyme wound up with a PICC Line for antibiotics. Many Lymies call it the PICC Line Club. I realized that people either wanted to be in the club or they didn’t. At the beginning of treatment, I did not want a PICC Line. However, as time goes on, the PICC becomes either necessary or desirable depending on the condition of your veins. Starting February 2007, I had been going to doctors once a week or once every couple of weeks to get IVs. At one point, the frequency was twice a week.
I chose not to do antibiotics through IV, but alternative therapy. One of the IVs I received, I could drive afterwards, but not much else. I decided to do a new treatment. These treatments render me of doing anything. The first few treatments, I even needed help going to the bathroom. Sometimes I couldn’t stop drooling after the treatment. I couldn’t control the muscles in my throat to swallow. July 17 (2008) was supposed to be an ordinary day for me. There had been talks of getting a PICC, but we weren’t supposed to discuss it until the end of July at my follow up. That day, I got dropped off at my IV appointment.
My nurse proceeded to look for a vein. I got a bunch of “Oh honey” and “I’m so sorry” and “I just can’t find one.” Still she stuck that needle into my arm trying to find a vein. The first one she prodded for what seemed like 15 minutes, but it probably was only about 2. That one hurt, but it wasn’t any more painful than usual. The second vein she prodded we both thought she got. It was painful, but once I got the heating pad on it I knew it would be fine. UNTIL, she turned on the IV itself. I screamed out in pain. She stopped the IV quickly and pulled it out. She grabbed my other arm gently and said “what about here?” she touched on a spot that almost made me jump out of my seat. So she tried one more spot and at this point I am full of tears. The pain of the three tries and three failures was more than I could take. So she sent me over to drink more water and heating pad my arm some more. She went away in private to talk to my doctor.
They immediately went to the PL discussion because that’s what we were going to set up at my next appointment at the end of July. He comes out and looks at my arms. His eyes are filled with compassion and he asks me how I’m doing. That’s a loaded question there. I fill him in with all the details of the last couple weeks and he decides he’s going to set up the appointment for next week. I broke down saying that I was missing a lot of work and that I needed something that day because I was going downhill fast and I just did not want to get back to where I was because that spot wasn’t pretty. I did not even enjoy life in May of 2008. I was fed up with everything and I just was done. If waiting another week for a treatment was going to bring me back to where I was 2 months ago, I felt like screaming “put a fork in me I’m done.”
He left the IV room again saying he was going to see what he could do. So he called over to the hospital and came back. Once he returned, he said something about doing a miracle. I had to get over to the hospital right then and the doctor over there would do it immediately. Then after it was inserted for me to come back for my treatment. This was the time to heal, build, embrace, mend and love all in one moment.
So I called my husband and told him everything. He started driving to pick me up. I called about 3 people that I knew had picc lines to help calm me down, but no one was answering. I had nervous energy so I just started walking to the hospital and my husband picked me up – I hadn’t’ made it very far. It was still almost in the parking lot at my doctor’s office. So my husband and I trotted over there. After a lot of “go here” and “go there” and “you’re not in the right place,” we finally found out where we were supposed to be. We walked into the hospital at 9:15 or so and walked out at 11:45. A strangely looking man came out to get me. I told him I was extremely nervous and he said that there was nothing to worry about and that they would go over every step. (I will refer to him as Funny PICC line Guy aka McJeff in future posts)
Throughout the 45 minutes I was in this sterile room, I continually made jokes so that I could put myself at ease. It’s my coping mechanism. By the end of the procedure, the doctors were also making jokes. I think they could sense that was what I needed and not a step by step instruction of what they were doing. I got a “this is gonna pinch a little” right before a sharp pain hit and I said, “My husband would say that’s doctor speak for it’s gonna hurt like Hell.” They all laughed. Really only two parts hurt. Now I don’t know exactly what they did, but I’m assuming that the parts that hurt were when they gave the shot of lidocaine and when they punctured the skin for the PICC. I was covered in all sorts of dressings so I couldn’t see what they were doing, but what I could see was the monitors that had the picture of my insides on it. I watched the tube in my chest. I saw my ribs. He said .. and there’s your heart.
If I had known I was going to get this procedure done, I would have worn a different shirt. the shirt I wore was very tight and very difficult to put on once they had done the insertion. You may wonder – What’s a PICC line? In laymen’s term, a picc line is a tube that enters my vein and goes up my arm and into my heart. Then the medication will go through the tube instead of my veins and my heart will pump out the medications. There is about a 3 inch tubing that comes out of my arm and the end of the tubing there is a white thing. The white thing is what all my medication attaches to. There is a “clamp” that I have to undo for medications and as soon as medications I have to clamp back.
What will this do for me? I will no longer feel pain of a weekly needle stick. I will no longer feel pain when the medications go up my arm because my veins are protected by the tubing. It will take less time to do the medications because they’ll be able to drip it faster because it doesn’t hurt.
What was I worried about? I was told no lifting and I was very cautious about moving my arm much at all. Besides the pain from having a tube shoved up my arm .. I am very worried about bacteria getting into the tube. I was worried the clamp will pop open and I’d bleed out everywhere. I was worried about how it looked to other people when I walked around with what’s essentially a cut up sock on my arm. It’s either that or walk around with the worry out bacteria getting into the line or being bumped into or them seeing the actual picc line itself.
After a month, the massive pain went away. I felt like it was apart of my body, but if I lifted too much or moved my arm too far out I felt a lot of pain. I also am allergic to something they are using to clean it with so it’s causing lots of blisters, rashes and oozing.
What would I tell others that were considering this as an option?
1. The procedure itself is essentially painless. It was fast and easy and if you have the right picc line staff, they tell you what’s going on so that you’re not scared.
2. The pain comes about 30 minutes after and the pain of the PICC ends 3 weeks later, but if you have allergic reactions to the cleaning agent .. the pain returns. 😦
3. Go to dick’s sporting goods store .. buy soccer socks for women (or men if you have a huge arm). You can cut the socks up easily. I made 4 picc line covers out of one pair of pink Umbro socks. There is another sock that dick’s sells that did not work as well. As soon as I cut it, it deteriorated.
4. apparently GLAD press-n-seal is your best friend. I actually wound up buying a Dry Pro Picc line cover. You have to cover the picc when you shower/bathe because you can’t get it wet. Now the benefit of the Pro Picc was that I never worried about my arm getting set, but the con was that it was so tight that I needed help to shower. If I needed to bathe/shower without my husband’s help, I used saran wrap and tape. Google ways to keep your picc dry on youtube. There are several options.
5. Bring deodorant with you to work. Sometimes it’s hard to get it good – and you wind up sweating.
“There is a time for everything, and a season for every activity under heaven: a time to be born and a time to die, a time to plant and a time to uproot, a time to kill and a time to heal, a time to tear down and a time to build, a time to weep and a time to laugh, a time to mourn and a time to dance, a time to scatter stones and a time to gather them, a time to embrace and a time to refrain, a time to search and a time to give up, a time to keep and a time to throw away, a time to tear and a time to mend, a time to be silent and a time to speak, a time to love and a time to hate, a time for war and a time for peace.”- Ecclesiastes 3:1-8