treatment

All about PIC lines

A PIC line allows repeated doses of intravenous (IV) fluid to be administered without having to repeatedly stick a needle in a vein. This is helpful when one has been told to administer IV antibiotics daily for six weeks. That much I knew when I arrived at the hospital at 9am on Tuesday morning. What I didn’t expect is that it would take almost 8 hours for this line to be inserted! Luckily, I spent much of that time with a wonderful neighbor in the bed next to me. Not only was she a sweet woman (she and her husband bought me lunch as I was unprepared with cash and had no way to go get it!) and a reminder of how much I have to be grateful for (a grandmother to many, she also was on her 6th chemo treatment), but she had a PIC line of her own and was full of advice. Here is what I learned about PIC lines and IV antibiotics both from her and from my own experiences over the last six weeks:

  1. Make sure the PIC line is inserted in your non-dominant arm! This will make it easier to deal with showering, administering medicine, and so on
  2. Ask that it be inserted about 2 inches above your elbow. This will avoid problems such as the dressing being in the crack of your elbow where the PIC line may get bends and kinks in it
  3. Be sure that everyone dealing with your PIC line keeps the insertion area very sterile. Do not be afraid to speak up and ask people how they are making this happen, and what to watch for or do yourself.
  4. Make sure that you are happy with your dressing. My PIC line’s dressing had to be changed every week. I was lucky enough to have a nurse very experienced with PIC lines most weeks, and I could really tell the differences on the week that a substitute changed the dressing. Even so, in the first two weeks, I had to ask for an “emergency” mid-week dressing change to ensure that the line wasn’t kinking, the tape wasn’t causing my arm to break out in hives and so on. If you are uncomfortable with something, speak up.
  5. Be sure to ask for an extension so you can reach the line with both hands. It was an invaluable aid that allowed me to administer my medication alone when my husband was busy with the kids or traveling
  6. Also ask for a shower bag. I used a combination of an ACE wrap, two rounds of saran wrap and a shower bag (a plastic bag with a drawstring at the top and bottom), and pulled the drawstring so tight it almost cut off my circulation. Even with all of that, my ACE wrap sometimes got wet while I showered.
  7. An ACE wrap or the top of a sock (cut off the foot) both make great covers for your PIC line. This helps the line from catching and pulling (you don’t want it to pull out!) and also provides some privacy if you are in short sleeves
  8. If your meds normally infuse by gravity (as mine did), and nothing’s happening, check if there’s air in the line. I made the mistake more than once of pushing the saline through so far that the bubble of air in the saline tube ended up in my line and then nothing would infuse. Once I discovered the cause of this problem, I didn’t have any further troubles with gravity-based infusion.
my story, symptoms, treatment

Beginning treatment — oral doxycycline and then IV ceftriaxon

It took a week for us to decide which doctors to see and make appointments, and another week before I could actually see the doctors (partly because I was going out of town for my only trip since deciding to cut out travel and focus on healing, an important work trip).

I left town on Wednesday 11/7/07 not having yet decided on a treatment option and having only seen one doctor, the one who encouraged me to go on antibiotics for an unknown length of time and gave me a 4 month prescription. My husband and I had decided to wait until we got a second opinion before deciding whether to follow his advice. However, I was becoming more and more concerned about my symptoms, which included the beginning of pain in my knees (we had been amazed to see that I had bags of fluid the size of baseballs behind each knee when visiting the doctor) and increasing clumsiness.

I arranged to fill a month of the prescription (oral doxycyclin, 200mg) at the last minute and picked it up at a pharmacy near my destination. I began taking it immediately. The next day I continued to feel worse (jerky movements, clumsiness, fatigue, and, thanks to the antibiotics, extreme nausea at times). However I woke up the following day without back pain. It wasn’t until the pain went away that I realized just how constantly painful my back had been. Unfortunately the relief only lasted a few hours, but occasional pain free hours have continued to occur ever since.

After returning and seeing the local infectious disease experts (the other two doctors), my husband and I decided to switch to IV antibiotics (ceftriaxone, also called rocephin) which we began on Tuesday, 11/13/07 after my PIC line was installed. The clumsiness, etc made us want the strongest possible treatment. This continued for 6 weeks, ending on 12/24/07.

During this same period, I took sacromyces (shown to help the gut flora survive antibiotics, though who knows how effective it is for treatment this strong) and ate yogurt regularly. I also tried to avoid sugar in my diet to help reduce the chance of a yeast infection, and generally ate lots of whole grains. I also continued to receive regular massages.

Finally, I began a daily diary of my symptoms so that I could give better information to my physicians and better track changes. My hope is that this will provide some objective evidence of improvement (or lack there-of). For example, looking back over how many hours I’m sleeping may be a better measure of fatigue than my subjective estimates, which are strongly effected by how optimistic/pessimistic I’m feeling about the situation.