Unanswered questions about an uncommon illness

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.

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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!

 

 

 

 

 

 

 

14 thoughts on “Unanswered questions about an uncommon illness

  1. I don’t know how to help, but I can empathize (spelling) with you. Four years ago this coming February, I had the ankle replacement. Exactly one month later, I had to return to the hospital with a staph infection. That included pics (4) and all kinds of antibiotics. Last March I was referred to the wound center at Glendale Dignity Health. Its been smooth (?) Sailing ever since. The wound isn’t healed yet, but it’s on its way. I don’t have a port, but I do understand your frustration. Hang in there and get Henry some medical books.

  2. Martha, you are not alone. I’d love to visit you and that dog and turtle and husband and bird and….. Just say when. No house cleaning necessary. I don’t do much of that. Never notice dust. Would just love to see you all and offer support. Gotta go do some research reports. Hugs. Ann

    >

  3. Oh, my dear Martha, you are not alone. So many people love you and think of you and wish they could help (like me!) Do you want me to come? I could do it after Thanksgiving , if my Mom stays stable…
    Regardless, stay strong and stay out of the abyss. Call me if you want. Love you.

  4. *BIGgenuineHUGS*
    I tried to Google too even tho I didn’t know what to ask (Google).😕 But I’ll keep searching for some useful information that could help you. 🙏😘
    ❤️❤️
    I do have a great doctor in my FB friends list (a former salon customer) but she’s a plastic surgeon.

  5. Dearest Martha, and would help if we knew what to do-

    is it so-hospitals cannot turn you away? I’d say then go to an emergency room at a top hospital with a book to read and I imagine some Dr will see and treat you?? what do you think Dearest Dear Martha? Love June Berliner I wish so hard I could help you but I have no experience with any of this!!! I sense the aloneness you feel and I just know many like me care about you

    • Thank you June. I’m trusting that next week the dermatologist will have some answers and a solution for me. I was in the hospital for 5 days with IV antibiotics and it didn’t solve the problem, so I don’t want to repeat that experience. If I get a fever I will go for sure. Thank you for caring.

  6. You have had more than your share of bum luck. You said the surgeon doesn’t have office hours, but if you contact the hospital where the surgery was performed, perhaps they can let you know how to reach him. He must know someone who can deal with the infected port, you can’t be the only patient who has ever had a problem with infected ports. Wish there were magic words to help you through this. I hope this nightmare ends soon. BTW, I just finished Giving Paws and was very moved. Good times have to be on the horizon, because there has been more than enough of the crappy kind.

    • Thank you. I appreciate your support. I saw a good dermatologist yesterday who doesn’t think it;s infected. She prescribed a hydro-cortisone cream for one week, then I’ll go back. If there is improvement, I’ll be out of the woods. She seemed to know what she was doing, so I’m hopeful.
      Thank you for reading my book! I’m glad you liked it.

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