Beware of all enterprises that require new clothes. – Henry David Thoreau
We knew that the PICC line in my stenosed vein was going to fail, but it lasted longer than I think we all anticipated. When it did finally go, it announced itself loud and clear.
Last Monday, I felt a new pain in my right arm and in my back, by my right scapula. I assumed that it was muscle pain because I have been knitting so much and in new positions. But when my nurse Jennifer came for her weekly visit and turned off my TPN, the pain disappeared. And when she turned the infusion back on, the pain reappeared. Clearly the time had come to switch me to a tunneled catheter in my chest.
Interventional Radiology (IR) were able to get me in the next day to insert the tunneled catheter. David’s mother and stepfather were in town visiting, so I had kept the day completely clear, a near miracle given my current appointment load. Last week, in addition to getting a tunneled catheter, I had appointments with my dietician, my Stanford motility GI and my local GI. Plus TMS. And acupuncture. And therapy – my regular therapist, my pain therapist and my hypnotherapist. The dietician and GI appointments had been made months apart and were dates and times essentially assigned to me. With these doctors, you take the appointments any time you can get them. But it is annoying how they sometimes cluster like this. But I digress.
The tunneled catheter procedure itself went fine. The IR regular nurses doctors know me and they understand my situation. The nurse even adjusted my sedation cocktail to reduce the fentanyl because it slows motility. And Jennifer had kindly offered to add in a second visit on Friday to check in on me and answer my questions.
My skin can be reactive to adhesives, so back in June when we thought the PICC line’s lifespan would be shorter, Jennifer had had me trial different dressings on my chest in anticipation of the move to a tunneled catheter. We determined really quickly that the standard Tegaderm dressing wouldn’t work. The best dressing was the one that I was already using on my PICC line. I brought one of the dressings that work to the procedure on Tuesday, but the doctor said that a different standard dressing tends to work for patients who react to the Tegaderm.
Well, it turns out that I react to the dressing the doctor used. When Jennifer came on Friday, she changed my dressing to the one that works for me. But I can still see the outline of the original dressing in the hives on my skin.
There has most definitively been a learning curve as I get used to my new access points. First and foremost is the challenge of accessing them 6 times a day, give or take for meds, hydration and TPN. The lumens (access points) rest on the top of my right breast. Completely inaccessible in my usual crew neck t-shirts.
In preparation, I had purchased a couple of scoop neck tank tops to wear under my t-shirts. Those work pretty well for accessing my line, especially because I can keep my sweatshirt on to keep my arms warm. But I don’t own enough to get me through a week. I cut a scoop into an old t-shirt, and that worked pretty well. But the text/designs of most of my t-shirts sit high enough that if I would cut into them if I were to cut scoop necks into my favorite shirts. This weekend I bought 3 “double scoop neck” tank tops online and hope those will round out my accessible wardrobe. But this remains a work in progress.
I also braved my first shower with my new line. It was successful in that I got clean and washed my hair and kept my line dry. But it was nerve-wracking and not at all satisfying. It was also no where near as terrifying as my first few showers after I first got my PICC line in 2024. And by the end, I regarded showering with my PICC line as relatively easy. So I am hopeful that I will find a rhythm that works with this line too.
As mentioned above, I am still having to go into San Rafael, 30 minutes away, most days for TMS for my depression. We had originally expected this to be a 3 week booster, but it looks like I am in it for the whole 6 weeks. I wind up treatment at the end of the month.
I am frustrated that my last round of TMS didn’t last very long. My first round of treatment back in 2019 lasted for a couple of years. And there was a pandemic in the middle of it. This time it only held for a few months. I know my persistent pain and nausea and the medical trauma of the hospitalization for the pulmonary emboli and the deep vein thrombosis and all of the issues I had with my G-J tube this past summer were contributing factors to my depression resurfacing. Not to mention the underlying stress we are all experiencing living through these interesting times. But I am really hoping that this treatment cycle holds for longer.