PICCing up Steam, Part 3: Line Life

Living with the PICC line has its challenges, but has gotten a lot better over time. At first, my arm was quite sore, sleeping was a bit tricky, and I was really scared of showering (it is important to keep PICC dressing completely dry to prevent infection).

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Covered and (kinda sorta not really) ready for my first PICC’d shower

After a couple of weeks, the soreness subsided, and I became more confident in keeping the line dry while showering. (No mishaps!! Phew!)

An adjustment I made about a week in was to change the time of day I infuse. I was infusing in the afternoon, while my son was at summer camp, and then it would hit me like a ton of bricks in the evening, making it hard to get through dinner and bedtime routine. I decided to switch to evenings, in hopes of sleeping through the crappiness. It worked! I now start to infuse either after my son goes to bed, while my wife and I are hanging out chatting or watching tv, or I start it during my son’s bedtime, and infuse while we read stories.  It’s working out pretty well.

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Lounging on the couch for a bedtime infusion

While it may sound like everything’s going swimmingly (and really, it mostly is!!), the past several weeks have also been quite hectic.

One day per week I have to wait for my visiting nurse to come and change my bandage…and I do mean wait. With a job that takes her door to door dealing with medical issues in the greater Boston area, my nurse has a little trouble pinning down her arrival time, which results in a LOT of waiting around. Once she does arrive, the dressing change process is a little unpleasant.

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It feels so weird when it’s hanging out of my arm all naked!!

Sticky things need to be removed from my skin and my arm is thoroughly cleaned – while a tube is dangling out of an open wound in my arm…that travels to my heart. In addition to being uncomfortable, it can make me a little woozy to think of where the other end of that tube is!! And because the insertion point of the line is a wound, it sometimes gets a little…yucky, and needs to be cleaned more vigorously…which is how I ended up breaking out in a cold sweat and almost fainting that one time. Between the waiting, and the way I often feel after dressing changes, I always consider that one day each week to be mostly lost.

Not directly related to the PICC, but happening concurrently are my physical and cognitive therapy appointments, which happen twice weekly, and once weekly, respectively. I am so happy to have been referred for these therapies, as they are supplying me with invaluable information and tools to help rehabilitate myself physically and mentally from this illness. That said, exercising my brain and body at these appointments can be really exhausting, so the rest of my day after these appointments is often spent resting.

My last weekly appointment (for those keeping track: #4) is my supportive infusion therapy at my Lyme doctor’s office. These IVs have mega-doses of vitamins and glutathione, which help the antibiotics work better, me feel better, and my immune system stay stronger during treatment. One plus about the PICC line is that both the infusion and the blood draw I get at the same time can go right through my PICC line, saving me from needle sticks!

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My IV nurse drawing my routine labs

As usual, life goes on in spite of my treatment. I have even taken this infusion show on the road to visit family. While infusing at a hotel, I came up with a hoodie hack for staying warm despite  air conditioning and carrying my medicine balloon!

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Infusion fashion at a hotel

The most important news to report is that this antibiotic treatment is WORKING! It was slow going at first, but in time I started to have some very good days. At some point, I looked at my symptom notes and realized I was not having joint pain or neuropathy any more! Let me just linger on that for a moment – MY JOINT PAIN AND NEUROPATHY WERE GONE. GOOOOOOOOOOOOOOOONE!!

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Feeling especially kick ass on this day

Now of course, this being Lyme treatment, nothing is straight forward. Other symptoms still persist on moderate/tough days, and with pulsing five days on, two days off, herxing can hit at any time. This week, for example, ALL my symptoms have been flaring, including that joint pain and neuropathy I thought I had said goodbye to. The lows can be tough. When my joint pain came roaring back with a vengeance, after a really good stretch of feeling pretty well, it hurt in more ways than one. It’s amazing how quickly one can forget how bad the bad days are. There were definitely some crying nights, from the pain, from the realization that the fight continues, and from the sensation of looking back on how many days of my life have been lost to this pain.

With the treatment showing great signs of working, and the herxing continuing periodically, my doctor and I have made the decision to keep the PICC line and continue IV meds for an additional 4 weeks, bringing my total to 12 weeks by the time I finish in October. I am so glad to be able to do this treatment and really hopeful about where I will be in another month.

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