Owwieeeee. Sigh. I should be used to this by now. Sorry if anyone out there got a little queasy looking at tonight’s photo. This is a PICC-ture, heehee, get it? OK, that one was a stretch. This is a picture of my PICC line (IV) in my upper left arm. I had the distinct pleasure of going to the hospital today to have it replaced with a new line. Same site, same hole, same arm, same PAIN, new little purple line. This fabulous piece of equipment has been in my arm since December 18, 2012 and after ruining my comfortable sleeping positions, making my skin itch and not allowing me to take a relaxing hot shower for the past six months, the decision was made that I could NOT have it removed yet but that I needed a new one instead. Off to the hospital I went for more torture…
I originally got this line placed to undergo IV antibiotic therapy for my Chronic Lyme Disease. After two years of oral antibiotics, herbal supplements, antibiotics via injections, IV Vitamin C (through a peripheral IV in the hand or lower arm), acupuncture, microcurrent therapy, RIFE treatments and dietary changes, I finally agreed to try IV antibiotics at home. I hesitated to go this route for a long time because I was aware of the potential complications of possible blood clot, site infection or worse yet blood infection (bacteremia). I was finally prepared to move forward with it in order to keep fighting my disease.
Throughout my illness, I have always been willing to do “whatever it takes” to get well and if things were not working in my treatment plan, then I was always willing to change our course of action. Well, the time had come to get more aggressive. The first line went in on December 18, 2012 and it fared me well throughout two weeks of rocephin (which did not agree with me) and then three months of vancomycin which handily kicked my butt, especially in the last month. Unfortunately, my heart did not like vancomycin very much so it decided when the IV antibiotics were going to end.
It turns out that I needed to keep my little purple friend, Barney, for the long haul because in addition to IV antibiotics my body is starving for magnesium. This is a common occurrence in Chronic Lyme Disease patients but in most cases people can take oral supplements to replace their deficiencies. No such luck for me. Two attempts at oral supplementation taking the lowest dosage possible, with the “kindest” versions on the market had me chained to the bathroom which meant that my intestines were never going to absorb what I needed to increase my critical levels.
Add magnesium deficiency to the list of medical issues ~ check. Call insurance company and get approval for IV supplementation of magnesium ~ check. Get bags of magnesium delivered to house from infusion company ~ check. Hang a bag of IV magnesium and run into arm every stinking day for Lord knows how long ~ check. Get frequent blood draws to check RBC magnesium levels only to find out that it is not improving at all ~ check. Run out of nurse visits so we have to change the dressing every week at home by ourselves ~ check, check, check…whoa…wait a minute! What?
“You only get 20 nurse visits per year with your plan Ma’am so after this next visit I am afraid you are on your own unless you want to pay cash for that. It will be $98 per week.” Excuse me? So, you mean to tell me that you shoved a line into my arm that runs nearly into my heart that I have to hook up to bags of fluid everyday, which is bad enough in its own right, but now you want my caregiver to be responsible for doing a sterile procedure every week on an unsecured line that can be easily pulled out? “That would be correct Ma’am. Don’t worry, we will show her how to do it.” Oh, that is reassuring.
Let me remind you of a previous post where I mentioned that I am currently on disability, I have spent my entire life’s savings fighting this disease, I have moved in with my retired mother and I have NO MONEY. I sat there weighing my options, knowing that on one hand I had personal safety to consider, desperately wanting to prevent infection and keep my IV line intact. While on the other hand, I could not afford the $400 a month they were asking me to pay for a nurse to come to my home to change my IV dressing in a sterile procedure that I felt was a service they should be providing for my monthly fee of $500. If you add the $500 monthly premium I pay to have insurance to the $400 nursing fee every month for my dressing change that equals 2/3rds of my monthly disability check before I even start paying for my pills and office visits. What would happen if I lived alone and didn’t have a caregiver to change my dressing? Would I then be obligated to pay the $400 per month for the nurse to come simply because I can’t change a dressing on my upper left arm single-handedly? Why is it that they could put me in this predicament five months AFTER they had agreed to put the line in my arm knowing that a PICC line can last in someone’s arm for up to 18 months if necessary? If you are going to agree to pay for a PICC line to be placed in someone’s arm, then you should agree to pay for the services to care for that PICC line as long as it is in the patient’s arm and weekly dressing changes happens to be one of those services.
Due to my financial situation it really didn’t matter how much I desired my personal best interest, we were going to have to do the best we could on our own. My PICC line had already migrated a little bit out of my arm since its initial placement just from the frequent dressing changes. A couple of centimeters is nothing to get too excited over. However, once we took over dressing changes it had a mind of its own and decided to go on a walk-a-bout with each weekly adventure. It doesn’t matter how well you train a caregiver to change a dressing site there will always be complications because they do not do the procedure as frequently as the home nurse who is doing this for a living. Years ago they used to stitch these lines in place so they wouldn’t come out but the patients were getting infections at the site of the stitches so now they use a removable locking device called a STAT-Lock to hold it in place. That’s great when the line is IN the device but you have to remove the line from the device and change out the device every week, leaving the line free to roam around at will during this process!
Every week, I watched more and more of Barney show himself and I knew that he belonged in my arm, not on the outside. A decision had to be made. I tried to go a couple of days without the magnesium to see if the leg cramps would return (an indication that my magnesium level was still too low) and sure enough they came back with a vengeance. There was no way around it, I needed to have the line replaced. This morning I placed a call to my doctor’s office and asked them to make the arrangements at the hospital to change out my line. Thankfully, I used to work there so they could fit me in today. I went over to the surgery center this afternoon and they changed out my line. It’s simple really, they thread a guide wire into the existing line, pull this one out, thread a new one over it (into my arm and up into my chest) until the Sherlock 3CG Stylet System sitting on the surface of my chest beeps that it is in the right place, they confirm it by watching my ECG tracing on the heart monitor, pull out the guide wire, attach the ports to the end of the line, connect it to the STAT-Lock, finish the dressing and voila…a new line is in place! Obviously, it’s a bit more technical than that but if you want to watch a video there are plenty of them on youtube.
As I was leaving the hospital, I was thinking to myself this entire episode could have been avoided. The line was still running well enough. The red port was a little sluggish but I still had the purple port wide open and had never shown any signs of infection in the past six months. I had done remarkably well taking care of Barney and his only problem was that he wanted to migrate out during dressing changes ever since he missed his weekly nurse. Instead of the insurance company covering the weekly cost of $98 for a nurse to come change my dressing they likely just paid over $3,000 to change out a perfectly good PICC line because they refused to grant me extra nurse visits. It serves them right for not taking Chronic Lyme Disease seriously. It serves them right for making bedridden, homebound patients and their caregivers do more than they should have to do. It serves them right for putting money over the best interest of a patient’s well-being. I chuckled as I thought to myself… Payback is a ST~itch!