‘If something doesn’t turn around, you won’t make it out of here.’ I CAN’T have a 4th surgery.’: Survivor of 3 life-threatening surgeries advocates for those with invisible illnesses

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This is part 2 of Emma’s journey. You can read part 1 here.

“In July 2019, I withstood my 3rd Open Abdominal Iliac Aortic Bypass surgery at the age of 31. This entirely replaced my compromised graft. Surviving this surgery for the 3rd time has made me an ongoing ‘AAA Bypass Survivor’ because of the severe risk to life that increases with every bypass operation that is crucially required to preserve my life. The recovery period after this surgery was the most difficult recovery I have ever had.

I was hospitalized for 1 month following the procedure due to multiple complications, such as vomiting for 23 days unable to keep any food down, which caused malnutrition. Other complications included blot clots in the nutrition feeding line, paralytic bowel, and no pain medications for my freshly sown incision from my chest down to my navel. On the 3rd week of hospitalization I remember one doctor walking into my room to tell my family and me, ‘If something doesn’t turn around for you within the next week Emma, you won’t make it out of here.’ It was the most difficult recovery mentally, physically, and emotionally, that I have ever endured, to say the least.

A scar from a surgical incision on a woman's stomach
Courtesy of Emma Fitzgerald

The incision was very difficult to heal and is still currently healing underneath. But before I could fully recover, in September of 2019, my body rejected the new graft, restricting blood flow to my left leg again, only this time WITHOUT ANY surgery options or sustainable long-term treatment plan. Here I am now, 2 years later and counting, with a half-blocked graft again like in 2017, forcing myself through an amplified version of my self-created rehab in order to force my body to create more collateral arteries to support blood to flow to my legs, even if at a reduced rate. It’s my only source of self-reliant ‘medicine’ I have that is keeping me going right now. It’s a feeling like I am fighting with an open wound.

I have resorted to many avenues of healing from receiving local treatment to traveling globally for healing, but I have reached what seems like the ‘last leg,’ literally, of my journey because I am not a candidate for another ‘safe’ 4th AAA Bypass Surgery. The risks of complications are indisputably deathly high. I have consulted multiple cardiovascular surgeons who are NOT willing to operate. From their professional perspective, they feel the results would be ‘guarded,’ and the risk of further complications is too high.

It makes me feel like I only have an emergency option, like I’m living a life of subconsciously waiting for the ‘bomb to drop,’ where I experience so much pain I can’t stand up and am forced back into the emergency department, where a ‘best-effort’ would be made to save my life without any plan. I am in limbo again between waiting for a solution to present itself and pushing myself beyond physical exhaustion daily just to force the ‘survival instincts in my body’ to respond with more collateral arteries. This level of blood flow will ONLY be sufficient for a LIMITED AMOUNT OF TIME. If I leave my condition the way it is, I will slowly decline and be at high risk of heart failure, losing my legs, an internal bleed, or blood clot-related stroke/attacks.

My grafts have failed 4 times already, resulting in 4 encounters where I was in the ER racking my brain trying to make a treatment decision that could instantly end my life. With each surgery, the recovery challenges and complications increase every time. I feel I need other options that don’t require life-threatening surgeries. Our healthcare system is designed in a way where funding is directed to areas where medical breakthroughs are required for more common conditions, leaving rare conditions like mine without priority for innovative technological advancement.

A woman stands in a hospital gown and flipflops
Courtesy of Emma Fitzgerald

From the time I was born until this present day, I’ve needed to have a ‘guinea pig mindset and attitude’ and think outside of the box if I stand a chance at staying alive. While graft technology does support a wide range of conditions, it has an approximate life span of 5-9 years and hasn’t had much innovation in over 30 years. The limited lifespan is not nearly sufficient enough for a rare condition like mine, and others who cannot undergo surgery due to pre-existing underlying conditions.

I had heard of stem cell research along my journey, but I was always told there wasn’t enough research or clinical trials already done to guarantee it would be a suitable option for me. As I researched more about stem cell advancements, I came across credited articles that indicate cardiovascular as a new area of research for stem cell treatment. I have also consulted with doctors in the field at length, who have told me these clinical trials are actually being done and funding is an essential requirement, especially for a rare condition like mine, although some say I may not see it in my lifetime. I’m sure you can see how I live with mixed feelings about my future and quality of life.

I have been genetically tested for all underlying conditions ‘known’ for mutated gene associations with aneurysms, specifically connective tissue diseases and blood clotting conditions, which have all tested negative, leaving the cause of my condition and complications ‘unknown.’ I have been classified by the genetics team as a potential for being ‘my own kind of mutated gene’ (in non-scientific terms, ‘a Marvel Comic Character’ type of girl).

A woman sits on the floor writing in journals
Courtesy of Emma Fitzgerald

My continual genetic testing journey inspired me to create a comic character of myself to help with visualization in my healing process because my condition is not a condition that meets the eye. In fact, if you look at me, you wouldn’t be able to tell what I have been through surgically. I am a strong advocate for ‘invisible illnesses.’ The character shows my collateral arteries and the scars that remind me that I showed up for life and fought. It reminds me of the body’s complexity and resilience in creating ways to survive.

A comic character visualization of a rare condition
Courtesy of Emma Fitzgerald

The Misfit character has since been used as an initiative to raise awareness and funding for Cardiovascular Health and innovative treatments, through the support of my community team called the Misfit Club, consisting of friends, supporters, and other cardiovascular condition survivors. I am so grateful for my team and our continual daily growth and support all around the world. I have made a commitment to my healing, and to use my experiences to empower others, as a mentor of mine says ‘making my disability, my greatest ability.’ We pride ourselves in the Misfit Mindset, where we cultivate the belief that miracles do happen every day while choosing to believe in ourselves despite the odds against us.

I have had to manage my Cardiovascular condition that doesn’t have a diagnosed cause, nor a sustainable treatment plan but I am determined and dedicated to my recovery every single day. I admit, it does get exhausting pushing through physical pain and swelling in my limbs to force my body to its maximum capacity, trying to create pathways for blood flow. Seeing doctors all over, paying out of pocket for non-covered costly medications, therapy, consultations, and having a lack of the Government’s medical and financial support due to my condition falling in the ‘gray area,’ makes it extremely difficult to get the awareness and support for the solutions I need to persevere through this. Although I get discouraged, I can’t sit back and deteriorate without trying to find a ‘new age’ solution. I TRULY BELIEVE THAT MIRACLES HAPPEN EVERY DAY, OTHERWISE, I WOULDN’T BE HERE TODAY. ”

A woman with a rare condition who has a large exposed scar on her stomach
Courtesy of Emma Fitzgerald

This story was submitted to Love What Matters  by Emma Fitzgerald from Toronto, Canada. Follow her journey on Instagram accounts and her websites here. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories by Emma here:

‘She’ll pass away within 2 weeks.’ I was the FIRST child in the world to survive.’: Woman shares journey as survivor of rare congenital abdominal aortic aneurysm

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