My phone’s calendar alarm sounded this morning, reminding me that today is the 5th year anniversary of the insertion of my PICC, a peripherally inserted central catheter, or PIC line.
I set event alarms like this to remind me of what I’ve gone through, how far I’ve come, and that, like clouds, my body and mind are ever-changing. Lately, I’ve been imprinting this idea, one I learned years ago through mindfulness meditation, by saying to myself, “it’s just the weather again,” knowing that thoughts and sensations are impermanent and blow in and out like the wind. A sunny day will follow the storm, eventually.
So now, when the weather brings pain or illness or surgery, I strive for the position of observer, rather than defaulting to that of a participant in panic, resting in the knowledge that the storm will blow through and I’ll have weathered it again. I wish I had fixed the weather idea in mind long ago, as one harrowing storm was more like an insidious global climate change, so unforgettable were the events that surrounded that tempest which transformed my very being in a climacteric way.
February 2, 2007, two years to the month that my abdominal symptoms began, I was diagnosed with severe colonic inertia, a condition that stops the colon muscles from functioning. Five days later, after undergoing 10 hours in a day of further testing, I was hospitalized for malnutrition, dehydration, intractable abdominal pain, severe colonic myopathy and inertia, pelvic dyssynergia, and major depression. Forty-six pounds down from my healthy weight of 155, I weighed 109.
My medical team, comprised of doctors from three specialties, two nutritionists, and a physical therapist, strongly recommended that I have a PICC placed that day for total parenteral nutrition (TPN — vein feeding), as it was apparent that I could not nourish myself by eating. For whatever overriding reason, and knowing that long-term infusions of any kind can be poisonous, I refused, pleading for a chance to first test the newly prescribed regimen of drugs while trying to meet the minimum daily caloric intake outlined by the nutritionist by consuming three Ensures daily in addition to what I had been able to eat. My refusal and plea were met with high-browed doubts by my medical team, and astonishment along with a little anger by my better half, Danusia. Despite my mental and physical state at that time, the old (younger, actually) Cary took over, the Cary who clearly entertains no advice or comments once his mind is set.
Over the following three months, I slowly gained nine pounds, but at the same time, the new medicines were failing and my symptoms, especially my abdominal pain, were worsening fast. After weekly discussions with my GI specialist and multiple drug changes, I decided to see another GI disorder specialist, which meant I had to travel 7 hours lying down in the back of a car to Los Angeles, a daunting undertaking at best. The day of my appointment was one of the symptomatically worst days I can recall. After a 90 minute wait, I couldn’t sit up straight or hardly talk during the hour and a half interview. Nausea, pain, and mental fog relentlessly disrupted my focus, but one thing she said struck me like smelling salts: “There’s no way you can have major surgery like a colectomy in your condition, and if you don’t do something about your intake, like getting TPN, you will soon die of malnutrition.”
My back was against the retaining wall, but my choice was made easy because there was nothing else besides getting a PIC line and starting TPN that could be done at that time to keep me alive. So, back to Monterey to find another doctor, an internist, who was required to order and oversee the months of TPN I would need before attaining a nutritional status fit for colectomy and recovery. The reason TPN has to be closely monitored by a physician is because the liquid food infused through the PIC line into the superior vena cava has to be ‘digested,’ metabolized actually, by the liver instead of the GI tract. This puts enormous strain on the liver, which has to be continually monitored by blood tests to guide the rate and amount of TPN given to minimize complications, mainly those of liver and gallbladder failure, blood clots, pulmonary embolisms, and infections.
After two weeks of appointments and scheduling, I had my PIC line inserted under local anesthesia in the hospital by a radiologist May 31, 2007.
The procedure went well, lasting only an hour, and was nearly painless. That quickly changed a few hours later when the local anesthesia wore off. I thought I would be sore just in the area of my arm where the PIC line was placed, but the throbbing affected the whole of my upper arm, my shoulder, and the left side of my chest. Every breath, I had chest pain and thought it was the result of the PIC line scraping the lining of my vena cava.
Danusia promptly called the radiologist, who scheduled me for an x-ray to rule out line migration and pneumothorax, lung collapsing air in the chest from having a giant IV inserted to the deep level of the heart. Fortunately, I had neither complication, just irritating sensitivity to the foreign object in my arm and chest which the radiologist said would go away, eventually.
The following day, a visiting nurse came to change my PICC dressing and draw blood, following a delivery man, who brought the TPN pump and backpack, a large cooler containing eight 2 liter bags of TPN, and a huge box of supplies. This started a weekly routine that was supposed to last the ensuing four months. The nurse taught me and Danusia how to program the pump, assemble the lines, and schedule the infusions. It was complicated. To protect my liver and assure my glucose levels were safe, I had to check my blood glucose every morning like a diabetic and follow a tapering infusion schedule where the TPN would flow 24 hours/day for a week, 18/day the next week, 12 the next, and 8 the remaining weeks. That meant I had to caddy the pump in its backpack everywhere I went for 24 hours a day, and so on.
The first night with my unwanted companion was turbulent. After plugging the battery into an outlet, untangling the lines so I could lie in bed without crimping them, and turning off the light, I noticed the pump bathed my room in a pulsing green glow and emitted a continual clicking against a continuous mechanized whine. My arm still throbbed, and the break in my usually dark and quiet room was going to make my insomnia that much worse. Little did I know.
Somehow, two hours passed before I was abruptly awakened by the extreme urgency of an overfilled bladder. I shot out of bed, only to be tethered by the PIC line yanking my skin at the suture line. Desperately squeezing my thighs together, I uncoupled the pump from the charger, gathered the line, and rushed with the backpack to the head. Freeing the machine and successfully making it to the bathroom proved to be too much, so I placed a plastic bucket by my bed so I could simply stand in the middle of the night for relief without incurring further risk of another race.
The mornings consisted of a usual routine: prick finger and check blood glucose, piece together IV line with air filter, spike new TPN bag, fill new line with TPN without collecting any air bubbles, install line in the infusion pump, program pump for the next 24 hour cycle, sterile-flush PICC and connect it to infusion IV, start pump, stuff TPN bag and pump into backpack, gain weight.
The evenings had their usual routine as well: while I unhooked from the pump, Danusia would warm the shower for me since I was perpetually freezing after having lost all insulating body fat. She then would cover my PIC line arm in plastic food wrap and tape the ends to create a waterproof seal, which, whatever we might do, would invariably leak. She would shower me as I stood with my arm held above my head. The showers were short, but they marked the longest time I could stand in a day. Nausea, dry heaves, and dizziness were common, and I often needed Danusia to hold me up. After the initial week with the PIC line, I decided that a shower every 2-3 days was enough.
The visiting nurse would come change my PICC dressing weekly. Fortunately, I had a very good one who understood that I didn’t have the energy to see her in and out or engage in conversation. She patiently taught Danusia how to change my dressings and she would always ask if she could bring me my pain and nausea medicines. I was saddened and apprehensive when she told me she was moving to Hawaii.
I long awaited the new nurse like a child awaits a shot, and my apprehensions and fears weren’t wasted. The substitute nurse didn’t know the first thing about what she was doing. She kept asking how the other nurses did things while syringe sucking the PIC line so hard that it would repeatedly collapse, making a blood sample impossible to obtain. I swallowed my nausea and tried to carefully guide her through the simple procedure, but she continued to collapse the line while talking over me. My impatience and fear intensified as I watched her contaminate the field repeatedly. Moreover, she was using up way more time than I could handle. My nausea was peaking, and I almost lost it when she nearly ripped out the PIC line by carelessly tearing away the ‘sterile’ dressings which she had taped to my PICC. That evening, I had Danusia call to request that she never return. From that day on, unless a blood sample was required, only Danusia would change my dressings with the little help I could offer her with my free hand. I have no idea how anyone might manage a PICC and TPN alone.
The four PICC months were some of my darkest. The beginning marked my lowest weight as an adult and the closest I’d come to actually dying, and the end marked the colectomy, my first major surgery and first compulsory organ donation to this inexorable, inscrutable disease. Retrospecting, Danusia says those four months were some of her darkest too. At the time, she was in constant “do” mode: taking care of me and all the complexities surrounding my illness, working full-time, essentials shopping before and after, cooking, cleaning the house, managing the bills, taking me to all my medical appointments, and everything else. There was little time for her to absorb and work through the many traumatic impacts she was collecting, much less laugh, relax, exercise, read a book, or sleep peacefully.
While discussing the events for this post, Danusia told me that she’s been having triggered moments of seeing us in those months, thinking she must be witnessing someone else’s life or recalling a story of fiction. But then she feels the painful, sad emotions from that time and realizes that they are hers . . . and mine. She realizes she’s finally mourning those dark days.
By the time of my colectomy, September 28, 2007, I weighed 140 pounds. My PICC was removed the following day after I had a few bites of jello. I was relieved to shed the lifejacket, but considerably uneasy not knowing where the shallow end gave way to the deep end. After 10 days, I was released home, where Danusia had given me my most recent shower.
Soon, I reached and struggled in deep waters. I quickly lost the 22 pounds the PICC had pumped into me, and one month to the day after my colectomy, I found myself in the ER from unbearable pain under my diaphragm. Diagnostic obituary: dead gallbladder, poisoned by TPN. Then, after 11 days, 4 gallbladder attacks, an ultrasound, CT and HIDA scans, and an MRCP, I had laparoscopic gallbladder removal surgery, my second compulsory organ donation, which took my surgeon all of 16 minutes, skin to skin. And that medical ratio, 11 days to 16 minutes, spoils any dining ratio one might find from preparation through consumption and clean up of a major holiday dinner, including the evening ‘digestion’ walk.
These days, I’m maintaining good nutritional status and my weight around 125 pounds without the aid of a PIC line and TPN. It’s counterintuitive, but some poisons save lives. Many cancer and chronic illness patients know this well.
Like the weather, dark and bright, reality brings change, and sometimes your only option is having to PICC your poison.
Just be sure to take your windbreaker along.