WARNING: NSFW / graphic content below.
I wish that PICC stood for something fun like Party In a Cool Club or Pretty In the Color Chartreuse (I like green; I’m also not very creative). Unfortunately in this instance, it means Peripherally Inserted Central Catheter. That is what I am now sporting.
How did I get here?
One month ago I had my latest surgery: an exchange of right tissue expander to implant. Two weeks later I noticed a red spot below the incision and was put back on an oral antibiotic: Bactrim. During my follow up appointment a week later we did an ultrasound and the only thing we got out of it was that the skin layer in the area that is red is thinner than in the areas that are not red. There isn’t a mass or anything like it and it doesn’t look like there’s fluid build up either, but that doesn’t rule out an infection. We added a second antibiotic to the mix: Rifampin. After another week, this thing seems to be getting worse, not better, which tells me the oral antibiotics are not helping.
I consulted with my PS via email (including daily photos; this one is from Wednesday evening), as I was on a business trip and wasn’t able to see him in person. Based on a similar experience of a woman in the Facebook Prophylactic Mastectomy group (I ❤ this group!), I asked my doctor about IV Vancomycin. This is the big gun in antibiotic-land. He agreed that this was an appropriate next step.
Yesterday I hightailed it to the hospital’s radiology department to get a PICC put in for the Vanco infusions. As mentioned above, this is a peripherally inserted central catheter that is used over a prolonged period of time to deliver extended antibiotic therapy. I have never had one of these before and was nervous about it. The process is pretty quick and mostly painless. The nurse did a great job explaining exactly what was going to happen. We also chatted about BRCA, family history, and concerns about testing and a positive result. I shared my thoughts and experience as well as contact info and our upcoming local FORCE support group meeting details. She was right, the worst part was the local numbing injection that burned for about 10 seconds. After that the PICC was inserted into my upper arm’s basilic vein and threaded all the way to my heart. That part was painless.
I am set up to receive home care versus being hospitalized and this is all covered 100% by my insurance provider, because I have already met my deductible and out-of-pocket max for the year. However, one of the requirements is that I am home-bound while I receive this form of therapy. Not really an issue, since I work from home and have a hubby that can run errands. There are two ways I could receive the infusions:
- IV bag and electronic pump: this option is managed by the nurse and automatically pumps the meds every 12 hours, but I am attached to the bag and pump.
- Elastomeric pump (aka ball or grenade): this option would leave me free of attachments except for an hour or so when the pump is needed to push the meds, but I do the work.
Since I am very new to this and am not 100% comfortable with being in charge of administering the meds, hooking things up, and flushing lines, I chose option 1. I took delivery of all the supplies and six days worth of meds later in the day and had my first visit with the home care nurse in the evening. She explained how everything works, hooked me up to the bag and pump, and sat with me for the whole infusion to make sure I didn’t have any adverse side effects. All went well. She also explained that I am able to switch to option 2, but not until I have gone through the six day supply of meds that were already delivered in the larger bags (no returns). A nurse will visit me every two days to change the bag and dressings.
So far not seeing much of a change in redness, but I’m not expecting to at this point. The vanco makes my scalp and palms a bit itchy, but that is a common side effect. I experienced same before each surgery. Before my second infusion this morning I took a Benadryl, which helped. Next nurse visit will be on Sunday.
Bless your heart! I hate that you are having to go thru this….
Me too, Beth. Thank you.
Hi there! You were a great help and inspiration to me when I went through my PBM. It is crazy that I am more than a year out from my exchange surgery and you are still stuck! I am so sorry! However, maybe I can be a little help to you….. this summer I woke up with a staph cellulitis infection in one breast. I took oral antibiotics for 10 days, they were working, but suddenly stopped working and the infection reappeared this time in both breasts. I spent two nights in the hospital and ended up with a PICC line. I wasn’t given your option 1 and option 2 was fantastic. I had a home nurse who was the sweetest heart ever! She came out about every 4 or 5 days for blood draws and to check on me. Giving myself the infusion was not problem. My nurse gave me attachments long enough to handle it myself. My hubby and even my kids helped sometimes. But mostly I took care of it. My only problem with the Vanco is it made me crazy itchy, and made my throat burn. I took Benadryl and Tylenol with each dose. The whole process knocked me out for a few hours morning and evening. I wasn’t house bound at all. My husband wouldn’t let me mow the lawn though. I did find I couldn’t do anything very strenuous or my arm would get very sore. No one told me that would happen. Having the PICC line removed was a breeze, but I have a little scar I didn’t count on. What’s one more? And my arm had a rash from all the cleaning swabs over the course of bandage changes. Oh, by the way, Glad Press and Seal worked wonders for shower time! I was only on the Vanco for 14 days. It did work and I have been infection free since the last dose two months ago. I hope and pray this works for you! You so deserve to be done!
Your feedback IS really helpful and I appreciate it! Makes me feel better about doing this myself. I was thinking about shower time and using plastic wrap for that, so glad to see that worked well for you too. It is really encouraging to read that the treatment resolved your infection. I am optimistic!
The home-bound thing seems to be an insurance requirement. The nurse looked up my plan and then said this and made a note for the provider after I told her I work from home and it wouldn’t be an issue. I’m going to clarify if that’s just for the first option, where I’m always hooked up, or if they require it for either one and just because it is home care. Not that there’s someone watching my home to see if I stay inside. 🙂
My heart just goes out to you. You have been through so much and are so kind in sharing your journey. I truly wish you all the best and a speedy recovery. You are amazing to stay so strong and to think of all of us while you are in the midst of your own health issues. Stay strong! You are an inspiration!!!:) Caroline
Date: Sat, 22 Aug 2015 21:45:47 +0000 To: email@example.com
Thanks for the kind words and well wishes, Caroline. ❤
Oh, for the love of…!
Mogatos, as someone who’s also been force-fed shit sandwiches by the universe, I am sorry for your ordeal. You have truly been over-served, madam, and I tip my hat to your unending fortitude. Keep your chin up, and be kind to yourself, eh? You will make it to the end of this, and be stronger for it. ❤
Thank you, Lannis. I’m tired of the shit sandwiches. I’m ready for a ice cream sundae with a cherry on top. 😀 Thank you again for your continued support!
I really hope things get better for you quickly and that you won’t have to deal with this again. Thank you for keeping us posted. Please rest up and feel better. xo
So far it looks like the antibiotics are helping. The redness has gone down a bit, so that is really encouraging. Thanks, Rebecca. ❤
I had antibiotic therapy for a month via PICC line at home… No problems and great not to be in hospital… As the other lady said all good having it removed to… My nurse came each morning and evening … Had to keep the area dry where line goes in so the good old plastic bag!! I really hope that this gets rid of the infection… Also I took probiotics while on these antibiotics to help keep the gut healthy… Take care xxx
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