Just Tell Me Where I’m Going Before I Tell You Where to Go

Living with chronic illness is kind of like living in a hospital gown: it’s not made for comfort, it’s conspicuous, and there’s always a discomfiting breeze in regions not accustomed to regular air circulation.

It’s that vulnerability that makes life interesting. You never know what the next wind will bring—pain, a fever, a serious infection, hospitalization, an osteoporotic fracture, or just a bunch of worry over nothing.

This time was a mix of everything. In mid-April, I began running low-grade fevers—99.5-100.4. After three days, on Thursday, we called my primary doc, and were called in urgently to see a colleague of his (he was unavailable). They sent me to the oncology unit (the only place besides the ER where they can draw blood from my port) for a set of blood cultures. Less than 24 hours later, we got the call that bacteria were growing, but that they suspected contamination. Needed to return to the oncology unit and get two sets (which is nearly always recommended) of cultures—one from the port, and one from a peripheral site. Then we play wait-and-see, since blood cultures can take up to (or over) 48 hours to turn positive.

So we went home, feeling fine. No more fevers, no more night sweats, no symptoms at all anymore; we were confident that the cultures were contaminated, and that this second set would prove my health. No word on Saturday, so our confidence was well-founded.

Unfortunately, on Sunday one of the sets from my port started growing yeast, a particularly formidable fungus that is hard to beat and returns easily. The good news was that the peripheral cultures were negative, so it hadn’t spread. The infectious disease doc on call had me go to the ER to be admitted, so we packed our hospital bag and headed up. However, once we got there, the ER doc said that he and the ID doc had talked, and rather than keep me just to infuse antibiotics, they would give me a double dose of the antibiotic in the ER, then send me home and I could get home antibiotic therapy for the rest. We were thrilled! Avoiding a hospital stay is better than snow on Christmas morning. So we happily headed to our wonderful haven to enjoy a night together we hadn’t expected.

Monday morning, assuming that all was to go as planned and my antibiotics would be coming from my home health company, I optimistically unpacked the hospital bag.

Bad move.

A few hours later the phone rang—my ID doc wanted my port pulled immediately and me in the hospital to make sure I was stable. They also found two bacteria (in addition to the yeast) in the port culture, so I needed three antibiotics—but my peripheral cultures were all still negative.  I resentfully repacked the hospital bag (with little rush), and we headed in for a direct admit.

So, on Thursday I had an urgent doctor’s appointment; Friday had to have follow-up cultures from two sites; Saturday got to be home; Sunday was told I was being admitted and then was sent home; and finally Monday we were called back again to be admitted for real. Our heads just stopped spinning.

At any rate, the admission process went smoothly, partly thanks to a document I keep updated for travel or hospitalizations that charts my medication regimen in detail. Two hours after we arrived, they removed the port-a-cath that I’d had for a record-breaking 20 months. My history of hospitalizations and the need for IV medications have left my arms nearly void of viable veins for IV sites; the ultrasound was called in to find a patent vein, and even that was a hard stick. It lasted for a little over twenty-four hours before forming a bruise and distinguishable hard lump, so they found another vein (rather easily, really) and took the blown IV out.

At any rate, from the very beginning we had told them that if I required a PICC that it would have to be done in Interventional Radiology—not bedside, not fluoroscopy, but in the IR. Unfortunately my peripheral cultures started growing bacteria and yeast as well, so I was full-on septic, even though I felt fine. The goal was to get clean blood cultures, insert a PICC for the IV antibiotics, nausea meds, and TPN, and then get a new port in 4-6 weeks.

So we were admitted on Monday, and by Thursday morning were cleared for a PICC and discharge. The nurse assured us we were on the docket, but time went by and still no schedule. Apparently my name was on the list but never put on the schedule. So no PICC, no discharge Thursday. The Patient Services people came by, knowing we were furious about the situation, mollified us with food and parking vouchers, agreed to not make us pay for the extra night, and confirmed I’d be first on the IR list in the morning. Begrudgingly, we agreed to wait another night.

So I spent one more night in the hospital because the jackass doc didn’t want to take the twelve minutes to place a stupid PICC line. But I did get it Friday morning, so we headed home on a heavy IV antibiotic regimen with a plan to put in a new port in a few weeks.

It’s important to know that I despise PICCs. They get wet in the shower no matter how hard you try to protect it; they’re impossible to access when you need meds; and I have had nearly twenty, so numerous veins are impossible to use for a temporary line.

So I got my PICC and went home. New port was placed May 27. From the very beginning, it was very tender, and every time I deaccessed, sero-sanguineous fluid flowed from the site. After six weeks, I woke up with a notable sore and swollen catheter site. My Infectious Disease doc wasn’t in that week, but her colleague had me come in to culture the fluid that was leaking. We started antibiotics immediately, assuming infection was present. I’m a yeast factory, so I had three antibiotics: one anti-fungal, two anti-bacterial.

Sure enough, I had E.coli growing in the pocket around my port. The port itself was not infected; neither was my bloodstream. But the seat of my port was raging—red streak up my neck, swelling so bad my collarbone wasn’t visible, and a side order of pain. At the vascular surgeon’s office, he decided to remove it. Then he decided to page my ID doc and see what she had to say. Fortunately, she wanted to try a six-week course of IV antibiotics with an antibiotic lock for the port after use.

Today I had my follow-up—and no sign of infection! No surgeries, no PICCs, no hospital stays, no ER visits, no complications.

Sometimes, I guess, things actually do work in my favor. Thanks, God.

About Jenn

While pursuing my literary and professional goals, I managed a severe form of gastroparesis (paralysis of the stomach) for six years, now complicated by full GI failure and a nonspecific autonomic failure of unknown etiology. In August of 2010, I finally had my stomach removed (total gastrectomy) to stop the 24/7 nausea and to lessen the risk of spreading infection to my central IV line (port-a-cath), as both of my gastric tubes (one G-tube in my stomach; one J-tube in my small intestine) were chronically–and extremely painfully–infected for longer than a year. I couldn’t possibly have survived the six-plus years of TPN (IV nutrition), surgeries, new (and unrelated) diagnoses, and being forced to go on disability without my amazingly supportive, encouraging, adoring, patient Care Partner and husband, Greg (married 1999)… Who reminds me of the unconditional, perfect love of God as shown through His Son, Jesus. My writing credits include The Da Vinci Code Adventure and Two Roads Through Narnia as well as several movie review compilations. Not all of the entries are health-related. My conditions have finally settled into a quasi-normal routine. There will be ebbs and flows, but I am still active, and plan to live as long as I’m alive.
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0 Responses to Just Tell Me Where I’m Going Before I Tell You Where to Go

  1. Jenn says:

    UPDATE: After twelve weeks of antibiotics, we thought things were clear; in December, however, the port site flared up again and I ultimately had to have it surgically replace January 16, 2012. My new site is extremely healthy and well-placed–and it’s going to last a LOOOOOOOOONG time!!!

  2. Karen Simons says:

    I’ve just spent the last few hours reading through your life’s challenges. I was referred to your page by one of my friends who is friends with somebody who is friends with your husband. I’m not positive I got that correct, but it really doesn’t matter. I must say first off that your testimony is breathtaking. I love to hear how God takes a life that is broken and turns it around for His glory! I share the gastroparesis diagnosis. Mine was caused by long-standing type 1 diabetes. For the last year I have battled numerous line infections and full-on septic shock. Even as I write this, I’m trying to fight another bout of sepsis. My wonderful infectious disease doc is trying desperately to save my port. I’m told that if I lose this port I’m stuck. Im told I no longer have any venous access left. Kind of freaks me out! I’m not going to bore you with the details of my health adventures. Just wanted to thank you for sharing your story. I’ve been blessed!

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