Living with Central Lines and Chronic Hives
We all know chronic hives are so difficult to live with. It's frustrating, and at times agonizing. Finding out triggers, and a treatment plan to manage our flares isn’t the easiest. It takes time, and unfortunately flares to find what’s causing them, and what works to help manage them. For me, one trigger is adhesives. I discovered it years ago.
So what specifically do I want to talk about regarding adhesives? Well, let’s talk about living with a central line and chronic hives. How do they “interact”?
Having a portacath
I have a portacath, and I have a colostomy. I have an adhesive wafer around my ostomy 24/7. In the beginning I hated it. Trying to figure out what system worked. What I didn't react to. How to minimize the reactions. I struggled for the first few months after getting my ostomy. It was hard to try a new ostomy supply and have no idea if it’ll cause a flare or not. It was like rolling dice. Eventually we found what worked for me. The worst though, is I still get itchy at times, and it’s so frustrating.
My portacath is honestly a love hate thing. I love it, because it’s how I get my nutrition, TPN. However, the dressings have proven to be extremely hard to navigate and figure out. I’ve tried so many dressings. So many times i’ve suffered flare ups, which resulted in my having to take time off from being accessed, to give my skin a break to heal. Central lines are a risk, a big risk. I know this. I’m well educated on protocols and central lines. However, my chronic hives add to the risk. Making sure I stay on top of my treatment plan to minimize my reactions to my dressing is honestly kind of annoying.
I recently had surgery. A quite large surgery. It left me with a 7” incision down my abdomen. We discussed various things. The entire surgical team knew of my issues with adhesives. I woke up from tegaderm on the pain catheters. Surgery was on a Friday. By the next day I was already blistering.
To make matters worse, the pharmacist wouldn’t approve my doses of antihistamines that I take at home to manage my hives. As a result, I was without MY meds for 3 days. Just 3 days… THREE days sent me into a flare that lasted over 2 weeks. My surgery was July 8th. I was finally able to be accessed to run my infusions on July 25th.
So what can we do in these situations where adhesives are a trigger, but we need treatment that involves it.
- Communicate your adhesive trigger to your medical team.
- Come up with options/alternatives. For surgery, discuss if dermabond is an issue. If so, what are the available options to close the incision?
- KNOW what dressings work for you. It’s also good to have one on you for hospital stays.
- ADVOCATE for yourself. If they’re trying to use a dressing you know will cause a flare, speak up. Don’t let them increase the risk of a flare.
- Have back up meds with you.
Living with chronic hives, and having to have a dressing on all the time gets draining. Having to deal with a big trigger daily is absurd. I’m on such high doses of antihistamines just for the bare minimum of help. I also use clobetasol foam to help when I'm not accessed.
Frustrated doesn’t even begin to describe how I feel. This is a real issue. Central lines already come with high risks. Withholding my medication, that in all honesty can affect my port, is unacceptable. Being accessed in the midst of a flare, is not a fun time. We as patients, especially those with central lines, ensure protocols are followed for our line care. We need to keep a close eye on our lines, and our hives.
Just know, you’re not alone. I’m always here if you need to reach out.
Have you tried biologics as a method of treatment?
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