Forgive me for whining, but lately I’ve been feeling alone in my struggle with my recently placed Power-Port, the grape-sized catheter in my chest, that I need for monthly IVIG infusions. The surgery was 3 months ago, and it still hasn’t healed. When I showed my inflamed port to a doctor a month ago, I was immediately hospitalized, and pumped full of IV antibiotics(Vancomycin and Cefepim), to prevent sepsis. Once discharged, I continued to get IV antibiotics(Rosephin), at home for 2 more weeks. By now the infection should be gone, right? Wrong. Not only is the port still red, it hurts too. What am I supposed to do? Go back to ER?
Friends have asked, “Can’t you go back to the surgeon who put it in?” The answer is “No,” because he was a special radiologist in Interventional Radiology, who just does that surgery, and no follow up. He doesn’t even have office hours. So, who the heck do I talk to about my port problems?? My previous ports were put in by a general surgeon, who would gladly see me for a follow up, but a few years ago, due to insurance changes, I had to change doctors and hospitals.
I called my internist, even though he doesn’t have much experience with ports, because he has a way of calming me down and convincing me I’m going to be okay. When I showed him the inflamed port, he looked alarmed, but instead of sending me to the ER,(whew!) he prescribed another antibiotic (Bactrim) for 10 more days. He also referred me to a dermatologist. My only experience with a skin doctor was when I was a teenager with pimples. I’d forgotten they know all about wound care and diseases like leprosy, herpes, impetigo, scabies and allergies, to name a few. Then it occurred to me that I could be allergic to the darn port.
The earliest appointment I could get was in 2 weeks, so now I just have to take my antibiotics, deal with all the intestinal distress they cause, and try not to obsess about the painful red knob on my chest. If my body is rejecting it, can I just have it removed(another surgery)? Maybe I’m overreacting. Why wasn’t I allergic to the 3 previous ports?
The worst part of this whole situation is that I don’t have anyone I can really talk to about it. There must be others who have been through this. When I Google the topic, I find very little about causes for inflamed ports, other than infection. I got my first catheter in 2005 for monthly treatments of IV Immunoglobulin, to protect me from horrible infections like coccidiomyocosis (Valley Fever), which robbed me of my left lung. My condition, Common Variable Immune Deficiency, is considered a rare disease, but it’s not that rare. I’ve met people at medical conferences who have it, but not all of them have ports, and those who do, haven’t mentioned port problems.
I’m usually pretty good at finding hope and comfort, despite my illness, but these mysterious catheter complications have left me feeling beaten down and alone. Henry does his best to help, but he’d probably have to attend medical school to really provide a solution, and he’s still working on his reading and typing skills.
Again, I apologize for grumbling, but I’m hoping someone out there can relate and offer some suggestions or comfort. Many thanks.
All I can think of is this quote from Samuel Taylor Coleridge, which we learned at Juilliard as a vocal warm up:
Alone, alone, all, all alone,
Alone on a wide wide sea!