Lyme – PICC Line Installed

Last post, I finished 4 weeks of treatment with a PICC line prescription. I scheduled the outpatient procedure at a local hospital, but I was a little worried that it might not happen or might not be covered because my doctor is out-of-network and not affiliated with any hospitals. That was my worry, much more than whatever would happen with the actual procedure.

I got there on Monday afternoon, and was called up to the registration desk. There was a little moment when I thought, “Is it going to go through?” because the clerk couldn’t find my doctor’s name from a list. But then she added him to the computer, and that was that. She did have to call my doctor’s office and get another prescription faxed to her because the one they had given me didn’t have a diagnosis on it, but thankfully my doctor’s office answered and sent the prescription in a few minutes.

So I was in! A nurse came and brought me back to radiology and did the procedure. At this point, I did have a few nerves about getting a tube stuck through my arm into my chest, and the nurse was a little off-putting, teasing me that he should be the one who was nervous because he had never done this kind of thing before. But it truly wasn’t that painful, just a needle, and I was good to go. I had to wait a while before I could get a chest x-ray to show that all was in place. Some of the reason why it took so long to get an x-ray was that my doctor still hadn’t been put in the computer. “You shouldn’t be able to get this done if your doctor isn’t affiliated with our hospital!” But it was already done, and I felt fairly certain they weren’t going to pull it out. Lo and behold, after a few minutes and some phone calls, he was added and I was official.

While I was waiting for the x-ray technician to come get me, I started reading over the booklet they gave me about my PICC line. Lots of information about how to keep the PICC line clean, lots of information about all the things that could go wrong (!!!), and – one page that I couldn’t help giggling out loud about – “is it okay to have sex when you have a PICC line?” (I don’t know about you, but sex doesn’t involve my upper arm too often.)

I asked about changing the dressings, and the hospital staff assured me that the nurse at my doctor’s office would be able to change the dressing. They told me to have her change it the next day (“But I won’t be at their office again till Thursday.” “Well, it can probably wait till Thursday.”) and then once a week after that. But they said she would know what to do and what to use. Finally, the x-ray tech showed up, took a chest x-ray, and I was allowed to leave. I went straight to my doctor’s office, feeling pretty good that this at least would be an easy treatment.

But guess what? It wasn’t easy. The nurse at my doctor’s office flushed my line, then connected the IV. And it wouldn’t drip. Then it finally began dripping, and it was soooooo slow that I would have been there for 6 hours getting my IV. (I was actually supposed to have 2 IV’s that day, but because it had taken me so long to get the PICC, the 2nd IV was rescheduled for Thursday.)

The nurse decided to take the cap off of my PICC and connect the IV directly to the tubing. This scared me because the literature I had read had advised never to remove the cap as that was a barrier to prevent anything that might cause infection getting into my line. However, connecting the IV directly to my line did cause the drip to go faster. Still slower than usual so that my IV took a good 2 1/2+ hours, but at least it was dripping.

While waiting for the IV to finish, I had a discussion with the nurse about changing the dressing. She told me they did not do that at the office, and that I would have to arrange for a home health nurse to come to my house weekly to change my bandages. The office would flush the line with saline before and heparin after every IV treatment, but they would not change bandages. She told me to call the hospital back, and see what they recommended.

This is a huge long story about calling the hospital, my doctor’s office and another doctor’s office, just trying to find someone who would change my bandages. All to no avail. And in the meantime I was also told that routine blood work that I needed to get done at one of my doctor’s offices couldn’t be done now that I had a PICC line, and that I’d have to find a lab somewhere that could do it for me. I thought this PICC line was supposed to make life easier for me!?!

I finally called a friend who is a PT to ask if maybe her mother-in-law, who is a nurse, would be willing to change the bandages for me. She suggested a mutual friend who is a nurse might be a better choice. I called the friend, and she told me she would do it, but I would have to get the needed supplies first. Another round of calling the hospital and several medical supply stores ensued, and I was able to get stuff to change the bandages.

The next day I went to my friend’s house and she changed the bandages for me. My arm was very sore that whole day (and for a few days afterwards), but after seeing the bandage changed, I knew that MM would be able to do it from then on (though my kind friend did offer to do it weekly for me if I needed it).

After my Thursday treatment, I had a night where I had difficulty breathing and almost thought about going to the ER, but my husband convinced me to just try and sleep. I was worried that air had gotten into my PICC, but when I called the hospital the next day, they assured me that I would have to get like 10 cc’s of air into the line before I would have to worry about the clot. Apparently, I was just having another HERX reaction.

To be continued… again…

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One thought on “Lyme – PICC Line Installed

  1. I just had to leave a comment – I,too, have Lyme disease and have been having rounds of I.V. treatments (no PICC line though). I can completely relate to the feeling of not being able breathe as a Herx reaction. I’ve been getting treatments at the West Clinic in Pocatello Idaho – for the first time in five years I know I’m not dying and am returning to who I was and who I really am (before Lyme began taking over). I wish you luck with everything!

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