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To Port or Not to Port
So many of us have immunoglobulin in our treatment plan for Lambert-Eaton. For me it’s incredibly impactful in mitigating the muscle weakness. However, IVIG is anything but like taking a pill orally. It’s invasive. It requires the services of an infusion nurse in most cases. An IV has to be set for the infusion. This can be an easy procedure, or it can be difficult and stressful, both for you and the nurse.
When I started IVIG, I got one IV set for one infusion each month. Mary, one of my infusion nurses, never missed. There’s an art to setting IVs , and she was an artist. That changed. My dosage changed to a two day infusion, and I was sent out to an infusion center. No more Mary, my IV artist. This is where I learned not every nurse who sets IVs has the knack (apologies to my nurse friends). Now we were getting misses and retries. This time it took three tries to get that IV set. And now, with that problem, do I try and take the IV home with me overnight now, so as to avoid doing this all over again tomorrow? I tried that and didn’t like the discomfort very much. After a couple of months of this, the really difficult infusion day happened. Over two days we took 10 tries to get two IVs. Enough.
Because LEMS is a progressive disorder with no cure, it’s fairly safe to assume, without other factors, IVIG is a long term treatment. You’re going to get infusions ongoing and IV access is going to be part of that (unless you do Sub Q). As the head of nursing at the infusion center told me, “Your veins aren’t going to get any better.” That was enough for me. After a discussion with my neurologist, we quickly decided a Port should be placed for easy ongoing access. She understood immediately what I was going through, as did the surgery team who placed the Port. 10 days after my Port placement we used it for my immunoglobulin infusion. It’s been a wonderful addition to my monthly routine ever since! -
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