SELF-ADVOCACY SAVED MY LIFE

SELF-ADVOCACY SAVED MY LIFE – THE DREADED SVC CLOT

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Living with a terminal disease as a young adult is sort of like trying to fight off a lion.

Imagine having to fend off the attacks of a lion all-day, every day. You don’t know a thing about lions, so you seek out the best lion tamer around. You find a lion tamer to help make the beast leave you alone, and you trust the professional to do their job. You follow the lion tamer’s instructions, but the lion isn’t backing off. In fact, it’s getting more aggressive, and you feel that at any moment the lion is going to decide you are a great meal and gobble you up. The lion tamer insists that the lion is not as aggressive as you think, stating that you are tired from working to make it go away, and brushes off the things you are observing. You seek out information on how to tell if a lion is becoming more dangerous and find that you are indeed correct in your experience – and that this lion is very close to eating you for dinner. You rush to find another lion tamer who listens to your observations and gives you the tools you need to survive the increased danger and finally get away from the lion for good.

As a two-time cancer survivor and bereaved cancer mom, I lived through this type of scenario, in a few different ways.

When you have two family members going through cancer treatment, you quickly learn how to live with central lines. I was terrified of getting a port at first, but once I did, it was one of my favorite tools for managing my medical care. Managing a PICC line and a central line in a toddler, on the other hand, was a bigger challenge – one that I had to solve so that we wouldn’t have any delays in treatment or extra challenges on our plate. After my Hodgkin’s Lymphoma was in remission, and Saoirse had died of neuroblastoma, I embarked on a mission to make the line securement devices I developed for our family available to hospitals and patients alike who needed them. Running a company focused on vascular access care from a patient perspective led to connections and friendships that allowed me to have knowledge about my access needs and wants when my Hodgkin’s relapsed just two years later.

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(To learn more about Fitzgerald’s cancer story, the safety devices she innovated, and her company CareAline, visit CareAline.com)

After two years of living with stable disease, and another two years of multiple failed immunotherapies, I had to start chemo again – and I refused to start without a new port. I knew my veins well enough to know I needed central access to avoid major discomfort and complications. Of course, any line comes with risks, and I would need the potential for multiple access points, so my doctor ordered a double lumen port. I needed a double power injectable port for my imaging and treatment, so I chose that option.

The new treatment helped some, but after a few months, it was clearly not going to finish off the “lion.” I sought out another doctor’s opinion and learned about a few newer treatments, and one that had the potential to work. After nearly 6 months, I convinced my primary team to give it a try. It banished that pesky “lion” in two treatments. Eight months, two additional triple lumen CVCs and an ASCT later, I was at last free from working hard daily to evict my “lion.”

My reliable port was still working, and it was nice to not have to get a PIV every time I needed labs. I no longer needed it two years after placement, but the COVID pandemic meant I didn’t want to brave the hospital just to have it out – especially with the immune system of a “newborn” posttransplant. A year later, I was in the middle of a big move and decided that I would deal with it sometime, just not right then. It wasn’t giving me problems, so I figured I would get around to it, eventually.

A few months later, in the middle of a cross country road trip, I started to notice my face was puffy. It honestly felt like moon face from steroids. I asked all my clinical teams if there was something that could be causing the swelling and fluid retention in my face. I wondered if it was the hormone replacement therapy I was on. I wondered if it was potentially a post treatment cardiac issue. No one had an answer (except to say that it could be my weight gain).

One day I woke up and couldn’t swallow my food. I won’t lie, it terrified me. I felt like my neck and face were swollen more than they had been the day before. I flashed back to my “lion,” and the first thought was my cancer was back (my neck nodes were always a problem). Quickly I wondered if I had a blood clot in my port lumen. I reached out to my doctors, told them what my symptoms were, my suspicion of a possible clot, and asked if it would be safe for me to fly home to have an in-person appointment. After asking a lot of questions, and having lab work done, my doctors didn’t believe it was a clot, and ok’d me to fly and check in when I got there. With an adjustment to my hormone prescription, the throat swelling seemed to taper off some between then and my flight home a month later, but I was still puffy. My appointment was uneventful – they flushed and drew labs from my port without much trouble – and I was referred to a nutritionist to talk about my post treatment weight gain. Still, no one investigated my suspicion of a clot.

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spacing. The feeling in my face wasn’t weight gain, but I thought maybe it was a reaction to being on the hormones. Because my dosage had recently been changed, I figured I would give my body time to adjust. I thought maybe this was just some of the long-term side effects that I would have to manage my life around post-transplant. And my port had drawn blood – how could it be clotted off?

About two weeks later, after flying back to our RV on the west coast, my whole family came down with covid. We were vaccinated and boosted, so luckily had very mild cases, and were feeling better in a few days with lots of fluids and rest. About 5 days after testing positive I was feeling well enough to take a short walk on the beach and get some fresh air.

The following morning, I woke up and couldn’t walk across our camper without stopping to catch my breath. My heart was racing. My face, neck and even chest were swollen and full of fluid. Then my husband saw my ears – any amount of movement, and he watched them turn purple. I knew something was horribly wrong. I started searching and realized I had been right about the clot – and now I knew where it was. I had a clot in my SVC – right where the tip of my port catheter sat.

We were traveling from the central Oregon coast to Portland that day, so we drove – about 3 hours – and my husband dropped me off at the closest ED to our campground; a satellite facility. I told them what I suspected, and my extensive medical history, and they took my case seriously and got me in quickly. They did a workup – labs, cultures, heart monitor, etc. – and sent me for a CT scan. It confirmed I had a clot in my SVC. They consulted with their vascular surgery team by phone and put me on oral anticoagulants and sent me home.

The next day I woke up with more swelling than the day before. My neck was bigger, I still couldn’t walk far, and my arms were heavy. I called the on-call nurse from the ED and asked what to do. She suggested I go back as the increased symptoms were very concerning. Assuming if I went back to the same ED, they would escalate my case faster, I returned. After trying to advocate for myself for hours with the “middleman” hospitalist who was taking direction from the vascular surgery team over the phone, I was again sent home without additional intervention. Exhausted, frustrated, uncomfortable and scared, I hoped that I would be at least a little better in the morning.

I was worse. I could barely lift my arms, and my neck was even larger than the day before. I needed someone to take down the “lion” before I became its dinner. After phone calls to the team who had suggested I go home, I decided I needed a new team to take me seriously. My husband drove me into Portland to OHSU – where interventional radiology was developed. I knew I was in the right place. I was immediately taken in and rotated through doctors, nurses, techs, and specialists. They sent bloodwork, checked monitors, and ordered a more detailed CT. It showed occlusive thrombus of the SVC extending from the inferior right brachiocephalic, left brachiocephalic and left subclavian veins – as well as a network of collateral veins that had been growing to try and compensate for the fact

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that blood flow was constricted for so long. As I had suspected, this clot had been there for a while. I was put on a heparin drip overnight and scheduled for a thrombectomy the next morning.

The IR physician could see that I was a well-informed and involved patient. He talked me through the possible options and listened to my thoughts. We were on the same page. I needed everything removed. It was a two-day procedure. The first to remove as much of the clot as possible, and the port itself. Overnight I had a lysis catheter to drip medication directly into my SVC to try and dissolve the clot they couldn’t remove. The next day they removed the lysis catheter and placed a stent in my scarred and narrowed SVC. The relief was immediate. Fluid was draining quickly, and I finally felt like there was progress toward feeling better. One more night in the ICU, and I was able to go home safely.

The most amazing part was that I hadn’t realized how long I had been feeling terrible until I felt better. I hadn’t been able to walk an incline or up a flight of stairs without being breathless for months. I had such chronic fatigue that I attributed to post-transplant life, until I was able to be active and mobile without fatigue just days after surgery. My face was going back to normal, and I started to look like myself again in the mirror. The symptoms and changes had happened so slowly, I didn’t notice how severe they were becoming. My body had tried to compensate, so I didn’t see the changes clearly. It was only when they were retreating that I saw how much impact the clot had on my everyday life. what is happening in my body – I am the only one inside myself feeling exactly what is going on. I have to listen to my intuition and gut and push for answers. I’ve been close to death three times in my life – twice from relapsed cancer fighting past treatments, and once from SVC syndrome. Each time the “lion” crept up slowly, steadily, and then charged at the last moment. I was the first to feel the symptoms but couldn’t always convince others – or even myself – what was really happening. Each time I had to speak up and ask for better options, second opinions, “special” considerations, and sometimes just to be heard. And each time a clinician had to hear me and take action.

I can’t fully describe the emotional roller coaster that is self-advocacy as a long-term patient. Even during my active treatment for cancer, I was living a full and busy life with motherhood, business ownership, marriage, home repairs, school pickup, and more. Cancer and treatment had to fit into my life – I wasn’t going to change my life to make it fit around cancer. I spent years advocating for myself to make the schedule work, to have treatments that I could drive to and from on my own, to fit appointments in during school hours. The world of cancer treatment isn’t built for an active young adult, but I would have missed 10 years of living if I had let it control my time.

Without confidence and a strongwilled personality, I think I would have been taken by a “lion” long ago. For now, I’ve locked him in a cage and shipped him far away, hopefully never to be seen again. It’s time to focus on experiencing life, and helping others gain freedom from their own “lions,” big and small. I hope my experiences can help another person speak up, advocate for, and receive better care. And I hope clinicians will take a moment to step into the mind of their patients and truly hear them when they share their experience with their “lion.” We live with our “lion” daily, so we know him best.

ABOUT THE AUTHOR

Kezia Fitzgerald’s unique view of healthcare and talents for innovation have spurred the creation of new products and designs to improve quality of life for patients and caregivers and meet the needs of ever-changing hospital staff workflows and hospital safety protocols.

CareAline® Sleeves and Wraps are supported by evidence, FDA registered medical devices, used as part of safety bundles in hospitals, and loved by thousands of patients and caregivers worldwide.

Kezia has won multiple awards and was an Alumnus in Residence and a Healthcare Industry Mentor for the 2018 MassChallenge cohort, where she drove CareAline to win a gold award in 2017. Kezia is a developer of the Young Innovators Workshop for iSPI’s Pediatric2040 conferences.

When she is not innovating in healthcare, Kezia is first and foremost, a mother of two to her daughter – Saoirse – who died from Neuroblastoma in 2011 at 18-months-old, and son – Lochlan – who is a curious (and healthy!) nineyear-old. Kezia is a two-time young adult cancer survivor, bereaved cancer mom, and is currently in remission from Hodgkin’s Lymphoma. 25