In last week’s blog post, I explained that I now have an accessory known as a PICC line inserted into my arm. With the help of the Mayo clinic, I explained that a PICC line is also known as a peripherally inserted catheter (also known as a long thin tube). It is inserted through a vein in my right arm and passed through the larger vein into my heart. The PICC line infuses the drug Milrinone to my heart.
I have to admit that over the years when I was searching for just that right accessory to complement my outfits, a PICC line was never high on the list – or even on the list. I reluctantly added it to the list of acceptable adornments because without it, I would probably be chained to a hospital bed until a new heart was available. This is because the Milrinone, while not a long-term cure, is keeping me up and about and in an exercise mode so I can be at peak strength when a heart becomes available. So maybe I should think of it as fitness equipment and not a fashion accessory?
The PICC line does come with a learning curve and some definite disadvantages. First there is the line itself which has two extensions on it. One extension is for the tubing that feeds the Milrinone into my heart. The other extension is used by the home health care nurse each week to draw blood. The up side is that she doesn’t have to stick me each week with a needle. The down side is that we have to keep the line very sanitary, and it needs to be flushed by me every day (except on the day when the home health care nurse is here).
Flushing is a process that involves alcohol wipes, a saline syringe, a heparin syringe, and a small turquoise cap filled with alcohol. When it comes time to flush the line, I have to take off the turquoise cap. I then use an alcohol wipe to cleanse the end piece of the extension. Then I open the package with the saline syringe and take off the cap. I attach the syringe to the end piece of the extension. I then push down the plunger one small push at a time until most of the solution is gone. I then repeat the process with the heparin syringe. Once I am finished, I place a new turquoise cap on the end of the extension.
The purpose of flushing the line is to make sure that it remains clean and clear and that no blood clot forms in the vein. You also have to be careful that you don’t flush it too quickly, or it will cause a reflux in the vein which might also result in a clot. Hence the need for the gradual, push/plunge, push, plunge cadence. I did really well with this process until about 10 days in. I was trying to engage the plunger on the syringe and it would not move. I initially thought it was a defective saline syringe and I got another one. Same issue. I took the syringe over to the sink and pushed down on it. The plunger moved and saline flowed into my sink.
I called a friend in the building who has stopped by to give me moral support whenever I perform a new task on my own. He came and waited with me after I left a message for a pharmacist to call me. I am so glad he came. The pharmacist asked me to take a picture of the blood draw extension. My friend was able to take a much better picture of my arm than I could. I texted the pictures to the pharmacist, who then informed me that the c clamp on the extension piece was closed.
Because the extension piece is in the bend of my elbow, it was hard for me to see the clamp. But my friend saw it and was able to open it up. Once the c clamp was open, the plunger engaged and the saline flowed and I was able to flush the lines. The clamp had obviously been open for the two weeks I was home from the hospital because I had been flushing the lines daily. I wondered if I could have inadvertently closed it when I was taking off an outfit with sleeves. The home health care nurse told me that sometimes people roll on top of the clamp in their sleep and that action closes the clamp.
The pharmacy sends me a supply of medication pouches to last a week and they need to be refrigerated. Each pouch lasts for 48 hours. The pharmacy also gave me two battery operated pumps. I always have one pump and pouch in operation inside my fanny pack feeding the drug into my heart. I change the pouch and pump out every other night. Approximately two to three hours before the change, I take the pouch out of the refrigerator. I set it up in the second pump.
When the 48 hours expires, an alarm briefly goes off, signaling that it is time to switch out the pumps. I unhook the empty medication pouch and the pump from the fanny pack (which is equipped with a lot of Velcro to hold the pump and pouch in place). I then put the pump with the new pouch in place and wind the tubing through a hole in the side of the fanny pack. I then take an alcohol wipe and cleanse everything before uncapping the new medication line and connecting it to my PICC line. Once it is in place, I turn on the pump, which goes through a number of diagnostic messages. I wait a few minutes and then check to see if the level of drug to be infused is moving down, signaling that the drug indeed is flowing through my body.
I had been pretty lucky with the pump and pouch working with no alarms going off until a few days ago. I was sitting around and all the sudden the pump alarm sounded. I looked at the pump screen and it said “Alarm Unattended”. Unfortunately, no instruction manual came with the pump. The nursing service typed up a short synopsis of how to hook the medication pouch into the pump. But nothing describing how the pump worked, options for carrying the pump, or a troubleshooting guide.
Fortunately, as it was beeping at me and displaying "Alarm unattended", the pump screen also instructed me how I could restart the pump. I followed the instructions and the pump resumed operations and there was no alarm sounding. But I was curious. I went on-line to the website for the pump manufacturer and found a user manual. Here is what the troubleshooting tip said for the alert: Alarm unattended: The pump will alarm when left idle for 2 minutes. Press RUN to start the infusion or press OFF to power down the pump.
I had no clue what it meant about being idle. I was with the pump all the time and was always living, breathing and often moving. The pump alarm went off one more time that afternoon when I was walking across the room – again, no idleness to be found, yet the screen said “Alarm Unattended.” When the home health nurse came the next day, I explained what happened and showed her the troubleshooting tip. She had no idea why it happened, other than to ask if I had accidentally pressed the pause button. I told her the control panel was on the side of the fanny pack facing my stomach. It was not within range of my fingers. I have concluded that I got the pump with the warped sense of humor.
I had an appointment with my heart doctor this week. My goal for each appointment is to get a laugh out of him. This is not hard because he has a great sense of humor and an infectious laugh. I told him that I've noticed a new symptom - a definite increase in my use of profanity whenever the infusion tubing gets caught on a door handle, drawer handle, or even caught inside the freezer when I close it. In fact, at one point because the tubing is so long and doesn’t always stay inside the pack, I actually stepped on it. The pump yelped at me. To be fair, I’d yelp if someone stepped on me. Thankfully, this tubing is really strong.
The one thing that wasn’t as strong was my back. I found that having to carry around the pump in the shoulder bag whenever I was up and about put a strain on my back. I tried to carry it cross body, I tried switching shoulders, I tried adjusting the length of the strap. It was just too much strain on the back for a petite woman. Several people suggested a fanny pack, but since the shoulder bag was specifically made for the pump and the medication pouch, I didn't know if any old fanny pack would do. I called the pharmacy that is with the home health care company and asked if I could use any fanny pack I found on the internet. The pharmacist said, well you could but I have some right here. So he fed-exed one to me and I've been using it since last Thursday night. What a relief!
Getting dressed and undressed is an intricate process. I have to unhook the PICC line connection from the pump so that I can put my arms through sleeves and pull clothing on over my head. Once I am read to reconnect the PICC line to the pump, I can't just connect the two ends. I have to take an alcohol wipe and carefully wipe each end so that I can assure that there are no germs, as the line leads directly to my heart. Needless to say, I am trying to minimize the number of outfit changes in a day.
Taking a shower is an adventure. I have to wrap the fanny pack with the pump and pouch inside a plastic garbage bag and tie it and then put a clip on the knot to make extra sure that no water get on or worse yet, inside the fanny pack. Then I have to put a covering over my arm. The pharmacy sent me some plastic shower sleeves in the first order but not in the second order. The home health nurse gave me some. When I mentioned this to the pharmacist, he said the sleeves were on back order until September or October. (I must have missed any media coverage on the COVID 19 run on plastic shower sleeves!)
Friends started to make recommendations of things I could use like garbage bags tied around my arm, or a product called Press and Seal. It is like a plastic wrap that sticks to the arm, but still needs to be anchored down. I had some Press and Seal but then I spotted an issue. The products like Press and Seal and Saran Wrap have a serrated edge to cut the wrap. Well recently I went to get a piece of Saran Wrap and my tubing got caught in the cardboard container as I closed it. I wasn't sure whether the tubing had just made contact with the cardboard or the serrated edge. Yikes! I couldn't see teeth marks on the tubing and there were no leaks, but I decided to be cautious.
I then searched the internet and lo and behold, I found plastic shower sleeves. I'm not sure why the pharmacy is on back order when I was able to order 25 at a time. It is a little irritating because the home health nursing company the pharmacy is part of is required to send you supplies as part of their services. The home health nurse told me that some customers found reusable shower sleeves on line. I found one and it is a very durable plastic that you can use over and over again, so I ordered it - but I still have the plastic shower sleeves to use as well. All of these sleeeves work well in the shower, but suffice it to say it will be a long time before I have a long, leisurely shower. It's and in and out job and still takes much time because of all the prep and de-prep work.
I am getting much more used to the process and the routine of having a milrinone pump and a PICC line that includes an infusion and a blood draw line. It just requires concentration and iPhone reminders so you don’t forget to perform a task. What this experience taught me is that you have to ask a lot of questions because people who work in this field every day sometimes assume you will know as much as them. That is a flawed assumption, and also misses the fact that each patient is going through an incredibly stressful time in their life. Patients need to be walked through the steps and reassured so that they can avoid the perils of a PICC line
Melanie discovered that she had heart failure in 2013. She spent the next 7 years learning how to live with the condition, and how to achieve balance and personal growth. Then in October 2020, she received a heart transplant. This blog is about her journey of the heart.