It’s More Than a Line . . . It’s a Person

Swapna Kakani and Erik Samarpan

Control. When we are patients, we lose all agency of control. We become patients because illness has taken over us, the first evidence of losing control. If the illness is severe enough, we have to go to the hospital and if warranted we get admitted. Actions are done to us quickly. When I am admitted I feel I have lost my battle over control. I am vulnerable, exposed, and weak. Which is ironic, because it is when I am admitted into the hospital that I have to be my strongest and appear with my battle gear.

My name is Swapna Kakani. 32 years ago, I was born with Short Bowel Syndrome. Since day 2 of life, I have received either supplemental or total parenteral nutrition, to live. Consequently, I have had 31 central venous catheters. 26 of which have been infected with either bacterial or fungal infections. My first CVC infection was at 2 months old, and my last (hopefully!) infection was 4 months ago. Ironically both infections were from gram negative rod bacteria. Over the last 3 decades, I have seen all versions of central venous care inside and outside the home.

This most recent infection was unique for me and highlighted the gap with which we continue to struggle. This infection was my first CVC infection in 14.5 years. I believe one of the reasons as to why I have been able to avoid an infection for this long is because of my dedication to learning my standard of care to keep my catheter clean, safe, and secure. I became committed to learning from clinical presentations, to advocating for the supplies I needed, to improving the technique my father taught me decades ago, and to surrounding myself around a clinical team specialized in long-term TPN patients like me. I did my own catheter care, rarely letting others touch the catheter, I would ask for peripheral IVs for anesthesia, I stopped drawing blood from the catheter, and I mastered my home technique, regardless of the inconvenience. 14.5 years later I had control over an aspect of my life that brought such fear and unknown. Growing up I had at least one infection every year. I never knew when an infection would strike. Fever and chills would consume my body suddenly; I would have to be pulled out of school and rushed to the hospital. We would find out it’s an infection, and the catheter had to be removed in the operating room. A traumatic sequence I still remember today.

This infection like the 25 before showed itself abruptly. I started to have trouble concentrating and following my boss’s words during our team zoom call. I felt malaise and I knew the chills were around the corner. Within an hour, my heart rate jumped to 116. Although I have sub-specialty care, it is not local. Due to my symptoms, I had no choice but to go to the local hospital and have my care managed by my local primary doctor and my infectious disease doctor. I called my home infusion team who is out of state and went to the ER. I had a gut feeling I would have to advocate.

I did not want to relinquish my control. I had successfully kept this catheter infection free for 5.5 years since it was placed. It was in a location I liked. It gave me nutrition to allow me to thrive. In the ER, I gave strict instructions to the nurses, reading from text messages from my home infusion team, and speaking from experience. The words read in CAPS, “For blood cultures DO NOT WASTE.” Sure enough the nurses wanted to flush 10 cc of saline and waste 10 cc of blood before drawing for tests. They were used to wasting 10 cc before drawing blood for blood work. Another nurse said, “I never understood why we wasted.” I explained to them the importance of getting the blood from the catheter CONTINUED ON NEXT PAGE

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itself in case it was infected and how the protocol for blood cultures from a CVC is different than for routine blood tests from a CVC. Proper technique for drawing blood cultures was a new advocacy topic for me. I remembered I am in battle, I have to be prepared for anything. Hours later the lab called to tell us the unfortunate news, my blood cultures were positive. I had to be admitted. The entire time I was in the ER, as we waited for tests to come back, I kept telling myself internally, I am fine, I feel better. My fever is down, my chills are gone, and my heart rate is down. I maintained this self-talk because I was trying to avoid the next step, a hospital admission, where more will be done to me. I will have less control over the plethora of protocols and healthcare exchanges. I was transferred to the floor at midnight. An hour prior I had been given vancomycin. Although I warned the team, I developed red man’s syndrome as I did as a child, and I had to be given IV Benadryl. In a Benadryl slumber, I was wheeled into my new room. I purposely focused my energy to keep one eye open, listening to the ER nurse repeat my summary and transfer orders, making sure nothing was glaringly wrong. The nurse did her initial check and turned off the lights. I thought I could finally sleep for the night. She came back into the room abruptly and turned on all the lights. She shouted, “I have to change your dressing now, it is protocol with individuals with CVCs.” I am shocked! Now? I remember the power of my voice. I say, “I change my own dressings. I changed it yesterday. Please state that I am going against medical advice and denying the care.” Thankfully she accepted. At times, we must think beyond protocol and consider the patient experience. To me,a dressing change for the patient with a fresh dressing and clean site, at midnight after spending hours in the ER, was not a priority. Two days later blood cultures had to be drawn again. The nurse comes in to draw them. I ask, “Please do not flush with saline and waste the initial 10 cc of blood. Use the first 10 cc of blood you are able to draw back.” She asks why. I try to explain the reasoning, but my voice is not as strong. She responds, “But wasting 10 cc is how we have always done it.” I try to explain again. I can tell however I am not convincing. Her tone tells me her way is right. I felt defeated and lost my passion for trying. I stopped talking. The blood cultures came back positive. Because the cultures were drawn improperly and were drawn before targeted antibiotics were started, I asked if they could be drawn again. The doctor agreed. The next day, another nurse comes in to draw cultures. I ask again, “Please do not flush with saline and waste the initial 10 cc of blood. Use the first 10 cc of blood you are able to draw back.” Again this nurse asks why. He had never heard that before. I felt like a broken record. He stared at me, and asked, “Are you sure?” He left to get more supplies. At that time, I went to google. I was desperate! I needed to cite my reasoning. I told him what I found. He went one step further and looked at the archived protocols in the hospital’s database. After a few minutes, he said, “Oh you are right, it says it right here.” The blood cultures came back negative. 3 days later I left the hospital with my central venous catheter intact and a 14 day home IV antibiotic course.

I cannot help but think how powerless I am in a hospital bed. At the end of the day during a hospital admission, I will always be the patient. Everything I mastered for almost 15 years, was almost gone in a second because of statements such as; “That is what we have always done.” Or “It is protocol … I do not know why” instead of statements such as; “What is the patient’s goal?”, “How can we work together?”, or “What is the reason behind this action?”

26 central venous catheter infections are grained into my head. The trauma from the collection of hospitalizations can be overwhelming. As a child, I cried uncontrollably before every trip to the operating room. Even as a child, I knew I would lose all agency of sense and control. And wake up with pain. As a result, I have learned to cope by focusing on how I can minimize chaos, the unknown, and fear. I try to be part of the medical team. I actively engage in filling the gaps of healthcare delivery. I want to be able to look at myself in the mirror and know I did CONTINUED ON NEXT PAGE

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everything I could regardless of the outcome. As an adult, it gets harder to be the advocate with the big A because now I am the patient and my own caregiver. I must balance the exhaustion of illness with speaking up, alongside taking care of myself to live for tomorrow.

It is my healthcare experiences that motivate me to continue to advocate and speak up despite how hard it is in hopes of making another child or adult’s experience better than mine. It has been an honor to join the Association for Vascular Access as a board member and a member of the Beyond Acute Care Special Interest Group (BACSIG).

By growing BACSIG, sharing our stories, and initiating change, we hope stories like mine and Jose are anecdotes of the past. Jose’s story was previously described in IQ (“Best Expectations, Worse Outcomes: A Patient and Family Experience with Rural Home Infustion”, November 2020, February 2021, May 2021).

Today we have an update on Jose. As an adult who knows the child’s vascular access experience intimately, I admire Jose for his actions.

Recently, Jose, who has Muscular Dystrophy, was admitted to a major, world class pediatric medical facility for Partial Ligament removal and insertion of partial plates into both feet. In pre-op, you could hear from a mile away, “STOP!” As the Anesthesiologist was getting ready to access Jose’s peripheral IV, he swiped the injection cap quickly, with one pass, with an alcohol pad, completely ignoring the process of scrubbing the hub for at least 5-10 seconds. The physician, startled at Jose’s reaction, asked “What gives?!” The entire operating room staff were puzzled and as shocked as the physician. Jose, only a child, had been trained for such an event repeatedly by his home infusion staff. Instead of a text message he had the instructions already ingrained into his head. He knew the correct process and the reasoning behind the action. The physician did not let Jose speak. He looked at his colleagues instead. The colleagues shrugged in confusion. The physician proceeded to scrub the hub again with one pass. Jose was then put to sleep for surgery. Jose received a doll after the surgery. He named the doll “The Bad Doctor.”

Jose spoke up, he was his strongest advocate, and of all places, in the operating room. But for Jose, his awareness and knowledge of correct protocol, his armor, was not enough. Actions were done to him quickly and without much acknowledgement of the patient experience. It is time for us to change how we engage about vascular access between providers, patients, and family members. We, as healthcare team members and vascular access specialists, must take ownership of every line at every access point.

*We welcome your comments and feedback. If you are interested in joining the Beyond Acute Care Special Interest Group please fill out the volunteer application on the AVA website and reach out to Gwen Coney, chair of BACSIG, at gconeyrn@gmail. com.