There are many resources out there that tell us to make sure we know our options post diagnosis. Usually with an acute diagnosis we have days, maybe even hours left before we could experience a hemorrhage that will end our lives. In fact, there is any number of case studies that can be found on sudden death, which upon autopsy determines a person had undiagnosed leukemia. The fact is, there is no time for someone with a new acute diagnosis to seek out options. This can lead to intense feelings of helplessness. As a person who has spent her life as a chronic control freak, this was a really quick lesson in letting things go. That said, there are certainly things that are within your control, like caring for your central line and keeping others accountable for their part also.
Depending on the treatment plan and needs of each patient, you may find yourself with a Peripherally Inserted Central Catheter (PICC) or a Hickman. A Peripherally Inserted Central Catheter is an IV line that is usually inserted into the large vein of the bicep and drains from a large vein near the heart. The Hickman is inserted through the chest wall and drains over the heart. It’s both a blessing and a curse for anyone needing extended treatment. A blessing because frequent, repeated use of regular IVs can be irritating and damaging to veins. Also because it’s no longer necessary to be poked for chemotherapy, antifungal, antibiotics infusions or for withdrawing blood for testing. A curse because you will now have to navigate life with lumens (the end of the line where medication is infused) hanging out of your arm and maybe grapple with a fear of complication or infection.
Here are a couple tips and things to be very aware of while sporting your line. Being armed with this information could save your life:
It is VERY important that you understand proper procedure for PICC dressing changes. During the time I was admitted to the hospital, my amazing nurses cared for my PICC doing dressing changes every 7 days (plus an extra when I got it wet the first time I showered after insertion). They were amazing, meticulous, and never for one solitary second did I worry about the care my PICC was receiving. Once discharged from the hospital, I was told that I would have to attend a clinic in the next town over for regular PICC care. It is important to note that you will be assigned a care coordinator from the Local Integrated Health Network which is an organization, divided regionally across Ontario (here is a complete list for the equivalents across Canada), to act as a one stop shop for your medical needs. They then contract out to local businesses to assist with the various services they provide, such as PICC care. The first nurse at my local clinic, Betty, who changed my dressing was awesome. She was thorough and talked her way through the whole process. The second was also thorough. The third nurse, I noticed, did not change into sterile gloves once the old bandage was removed. Then, I noticed the fourth did not change gloves either. She even snapped at me when I asked whether she should be using sterile gloves. I had spent enough time in the hospital to learn of the repercussions of incorrect PICC care and even met someone who had been re-admitted after almost a full year of being discharged, because he got an infection in his PICC after a dressing change. He had to be treated for sepsis. The thing is, with a compromised immune system, sepsis can be quite damaging to the body and even fatal, if not treated in time.
This is a link to very informative guidelines that teaches you all things PICC, including exactly how a PICC dressing should be changed. Here they are again:
Take specific note of step ‘R’. This is paramount in preventing infection. You have a right to advocate on your own behalf or for the person you are caring for if you feel procedure isn’t being followed. You can refuse care!
Note: Some materials may change depending on availability but the process should remain the same.
SOMETIMES COMPLICATIONS ARE UNAVOIDABLE
Ain’t that the truth! The fact is, you and your medical team can take every precaution to avoid trouble with your line and you still may run into complications. A few things to keep in mind when donning a PICC or Hickman:
- They might hurt so make sure your medical team is aware of what you are feeling. They aren’t supposed to hurt but lets be real, you’ve got a tube in your vein. You’re also being pumped full of stuff for hours a day, every day, for a long time. I found by the end of the first phase of treatment, I couldn’t even lift my arm above my head. Take it easy on yourself and keep a record of any swelling, pain, skin color changes, etc. so your medical team has as much information as possible when determining how to attack a challenge.
- Although I never had the misfortune of dealing with blood clots, I met many patients in the hospital who did. You see, a flap forms at the end of the line, kind of like a scab and if it breaks lose, it can cause a blockage. If you notice any swelling or tingling in your arm, or anywhere else for that matter, let your health care team know immediately. It seems easily resolvable if caught before travelling to the heart or brain.
- Not having to shave your legs isn’t the only benefit of going through treatment, your skin may also not react to allergies…right away. My PICC had been in place for about 6 weeks before my skin started reacting to the chlorhexidine. All of a sudden one day, I had a rash.
As it turns out, many people seem to react to the ‘go to’ bandages and cleaning swabs. Be on the look out for any early signs to avoid complications with boils and possible infection. There are several different options if you do have a reaction. You may use saline instead of alcohol to swab the insertion site during changes. If your skin is super sensitive like mine, you may need a barrier spray like, Cavilon, to create some added protection. These options can be discussed with your medical team. Please note: All supplies should be provided by your clinic!
Having a shower can be pretty challenging with a PICC or Hickman. Getting it wet must be avoided to prevent complications with bacteria/infection. How might you shower without getting your arm wet you ask? Well, it’s a little tedious but it can be done! While in the hospital, I protected my PICC with small Ziploc bags and PAPER tape. Break a hole in the bottom of the bag and slide over your arm then tape the bag securely at the top and bottom. Using a drug like ATRA will make your skin very sensitive and it may even tear easily (mine certainly did). I used masking tape (in a pinch), cloth tape and paper tape. I found that the paper tape was most gentle on my sensitive skin. When I got home, I traded in the plastic bags for Glad Press n’ Seal. Since it’s sticky, it makes putting tape over your bandage a little easier.
If you intend on swimming at all during treatment (you may want to check with your medical team if this is wise from an infection standpoint), there are special sleeves you can get that will basically vacuum seal your arm. You can search online for waterproof PICC protectors. There are a number of companies who make them. For parenting hacks for PICC care for small children, click here. If you have a Hickman, you may be out of luck for swimming. I did find one mention of a one piece dry suit that might help if you’re really hard up for a swim.
I hope this information will help you gain some of your power back as you go through your journey. If you have any tips you’d like to share, please reach out to me at firstname.lastname@example.org, or through the Contact button on the menu bar.
Until next time, keep up the good fight. You’ve got this!