top of page

Celebrating Five Years Since My Life-Changing Surgery for SMA and Nutcracker Syndromes

 

Reflecting on my health journey from five years ago, it’s almost unbelievable how much has changed. Back then, I was housebound, hadn’t been able to eat or drink for two years, and, consequently, was dependent on artificial nutrition to stay alive. My future seemed hopeless, with no prospects or plans beyond mere survival.


Exactly five years ago today, however - on June 21, 2019 - I found myself sitting in a hospital room, about to take the biggest risk of my life. I was filled with a mix of terror and hope, clinging to the possibility that everything could change for the better. That moment marked a pivotal point in my life, and looking back now, I’m amazed and grateful at the transformation that has taken place.


 

In 2018, I was an inpatient at a renowned intestinal failure unit in London. This hospital, known for its expertise in bowel health, became my refuge after I was diagnosed with several conditions that severely impaired the motility of my digestive system. My entire gut was paralysed, leading to a cascade of debilitating symptoms: chronic gastrointestinal pain, vomiting up to 40 times a day because food and fluids couldn’t drain from my stomach, and severe weakness. My condition was so dire that I had to rely on a wheelchair for mobility and experienced frequent fainting spells and pre-syncope seizures due to malnourishment.

 

Physically, I was a skeleton. At 175 cm (5 ft 9 in) tall, I weighed only 43 kg (95 lbs), giving me a BMI of 13, which is dangerously underweight. My body was essentially shutting down due to starvation. To save my life, I was put on Total Parenteral Nutrition (TPN), an artificial form of nutrition delivered directly into my bloodstream. Thankfully, it worked, and within 18 months, I had gained an impressive 15 kg (roughly 2 stone). But while TPN helped me regain physical strength and much-needed weight, it wasn’t a cure for my debilitating symptoms. Despite no longer needing food and drink to survive, I continued to vomit due to an excess of stomach fluid and acid, and the chronic pain remained relentless.


 

During this time, I stayed in the hospital as doctors tried various medications to control my symptoms. After months of these gruelling drug trials, however, one of my doctors called my mum and I in for a meeting.

 

“Eleanor,” he began, “we’ve exhausted all options. There is nothing more we can do. You’re just going to have to accept that this is your life now and learn to cope with it the best you can.”

 

Hearing those words felt like a death sentence. My future, which I had always believed could improve, now appeared bleak and unchangeable – it was inconceivable to imagine that I would remain unable to eat or drink, living in extreme pain, and facing such relentless sickness for the rest of my life. It was a crushing blow, not just for me, but for my entire family.


 

I was discharged as an inpatient under palliative care. For those unfamiliar with palliative care, it means hospice care, typically for those in the final stages of life. Shortly after my discharge, the consultant from our local hospice visited me at home. She gently assured me that being under palliative care didn’t mean I was actively dying; it just meant I had a life-limiting condition, and they could access a wider range of drugs to make me comfortable. Despite her reassurance, the label of "life-limiting" made me feel that my life was categorically over in one way or another. I couldn’t help but think of all the things I hadn’t done, things I had put off or been too scared to do based on what other people might think. I was consumed with an unbearable amount of regret.


At this point in my journey, I had nurses coming to the house four times a day. As a TPN nurse left after setting up or disconnecting my daily TPN bag, a district nurse arrived to administer a new pain drug prescribed by the palliative care consultant. After a few weeks of no improvements, they decided to try a syringe driver, a machine attached to an injection needle that administers medication continuously over 24 hours. Unfortunately, however, this decision led to one of the biggest health scares of my journey.

 

 One late summer evening, I suddenly felt my limbs lock up. My head was locked against my shoulders, and I couldn’t move my arms or legs—it was absolute agony. We panicked, and my mum called an ambulance. By the time they arrived, I was having seizures due to an adverse reaction to the drug administered through the syringe driver—an occurrence affecting less than 1% of the population.

 

I was rushed to our local A&E, where I continued to have seizures for another five hours. It was a busy weekend night, and due to limited space, my gurney was pushed up against a corridor wall in a makeshift queue of other ambulance arrivals. I was screaming and crying with each seizure, my mum was sobbing, all in the chaos of an A&E corridor on the weekend until a nurse finally administered a dose of morphine, which ended up knocking me out.

 

Thankfully, I didn’t have any lasting effects from this experience, and I was able to walk out of A&E at four in the morning, nothing more than shaken up (both literally and figuratively). We called the palliative care consultant the next day to update her on what had happened. Concerned, she decided to admit me into our local hospice to avoid a repeat of this incident as they continued to try new drugs. This point in my journey was the lowest I had ever felt. Despite the beautiful, serene environment of the hospice—with large private rooms that opened onto peaceful gardens—the reality of the place would intrude. I would be awakened at five in the morning by the rush as the person in the next room passed away, or I would find myself intruding upon a family's moment of grief in the garden. I was there for three weeks and spent my 19th birthday there. Being surrounded by so much death and illness made me begin to wonder if it was worth carrying on. The constant exposure to the end-of-life realities made it difficult to maintain hope, and I often found myself questioning my will to keep fighting.


 

Watching this prompted my mum to take matters into her own hands. Every evening, she would spend hours trawling through internet forums for hope or answers. She was relentless, combing through every possible lead and thread in search of a solution. Then, thanks to another young woman in a similar situation who reached out after seeing my mum’s message in a Facebook group, she finally found it. This girl shared her story of being diagnosed with two vascular compressions and how she was scheduled for a surgery that the surgeon had promised could be life changing. That was all my mum needed to hear. She immediately booked a consultation with this surgeon.

 

I was sceptical and resistant, certain this would be another dead end. The thought of facing yet another disappointment was unbearable. So, when the surgeon told me that he could, in fact, see I had two compressions – Superior Mesenteric Artery Syndrome and Nutcracker Syndrome – that matched my symptoms, I was in disbelief. I managed to hold it together as he explained how he had treated other young women who were now able to eat and live their lives again. But as soon as we left the room, I broke down and sobbed for the rest of the drive home—out of relief, elation, and, most of all, hope.

 

They say that hope is a dangerous drug. As I continued to undergo more tests and the surgeon and my specialist at the bowel hospital had lengthy discussions about the surgery, the certainty that this would be the miracle I needed began to waver. Each appointment became more tentative. I had numerous conversations where they said, "What if it only provides a 50%, 25%, or even 10% improvement?”. Despite these discussions, I couldn’t shake the feeling of elation and hope. If hope is a dangerous drug, then it was the most potent and effective one I’d ever had.

 

In the months following this discovery, the change in my mood was palpable. The nurses, who had seen me at my worst, were astonished by my transformation. The day after that initial appointment, one of my favourite nurses visited. She stopped at the door of my bedroom, shocked, and bluntly stated, “You’re smiling.” It was as if a switch had been flipped. The prospect of the surgery, the mere possibility of a better future, had reignited my spirit. It didn’t matter what anyone said—if I had the chance to have this surgery, I was going ahead with it, no matter the risks.


 

June 21st, 2019 – Surgery Day. Despite all my bravado about not being worried or scared about the risks, I was a ball of nerves on the drive into central London and during the lengthy wait in what would be my recovery room. It sounds silly to say - but when two of the nurses who would be in the operating room came to escort me down to surgery, I was shocked to realise I had to walk there. All the other procedures I had undergone over the years had been emergency or urgent, and I was always taken in a bed or wheeled down in a chair by a porter. Somehow this felt more daunting—this surgery wasn’t an emergency or lifesaving; it was my choice; I was literally and figuratively walking into this in the hope it would give me a second chance at life.

 

As I followed the nurses along the corridor, I couldn’t help but look back at my mum and dad standing vigil at the doorway. A fleeting thought crossed my mind: “I don’t have to do this. I can just turn around, and they will take me home.” But ultimately, I knew that this life wasn’t one I wanted to keep living, and I would never be able to forgive myself if I turned away from this chance at happiness, even if it meant there was a possibility I might not walk out of there. In that moment, I imagined a life where I could eat without pain, where I could leave the house without fear of vomiting. I pictured myself reclaiming the activities I loved, spending time with friends and family without the constant shadow of my illness hanging over me. This surgery represented a chance to reclaim my life, and so, I picked up my feet up and kept walking.

 

As they tried to put in my epidural, I was shaking so much that they told me if I didn’t stop, they wouldn’t be able to do it. Rather childishly, but honestly, I admitted that I was scared and thought I would have my mum with me for this part. I will never forget one of the anaesthesiologist nurses who, as soon as I said that, held me against her chest and soothed me so they could proceed. It was a powerful reminder of how a kind gesture can be an absolute lifeline.


 

The surgery I underwent was a Roux-en-Y gastrojejunostomy and left renal vein transplant. As I lay on the operating table before being put to sleep, the enormity of what I was doing washed over me. I was putting my life in the hands of these surgeons, trusting them to help me achieve a future free from the constant pain and suffering that had defined my life for so long.  

 

The surgery took roughly seven hours, and I don’t remember much from those first few days in the ICU. One clear memory stands out: right after I got out of surgery, my mum appeared by my bedside, and I started crying as she held my hand. All I could manage to say was, “I did it.”


After five days, I was moved to a regular ward. At the time, we thought I was finally over the initial recovery hurdle, but it all came crashing down.

 

I remember feeling overwhelmingly sick as they wheeled my bed to the new ward. Little did we know that this was the onset of a nasty infection that would leave me passing blood from both ends continuously, hallucinating, and fluctuating between cold and hot sweats. During this period, I wasn’t just going day by day; I was watching the clock at the end of my bed and trying to get through minute by minute. My wonderful mum was my constant support - She ‘slept’ (although, in reality, we probably only got an hour or two of sleep the whole time) on a hard wooden chair beside me for the entire week. She was there to pick up the pieces and clean up when things got particularly hard.

 

Eventually, the infection began to subside. Surviving those harrowing days was a significant milestone, but the journey to recovery was far from over. I remember my surgeon's words before the operation: "You’re going to hate me for the first three months and question why you did this. And then one day it will get better." If I didn’t know better, I would have believed he had some kind of psychic powers.


The first three months were particularly brutal. I couldn't hold down any food or water, and lying down made me unbearably sick, so I had to sleep upright. The incisions across my abdomen and a six-inch cut on my right thigh left me only able to walk short distances, hunched over as my muscles recovered. There were many times during this period when I thought, "What have I done?". Then one day, just as my "psychic" surgeon had predicted, things began to change…


It started with small victories. I remember my mum bringing me the tiniest portion of bolognaise sauce, maybe a teaspoon, with a handful of plain spaghetti. I managed to finish that tiny amount without feeling sick or in pain. At the time, it felt too good to be true. Then there were those early mornings when pain woke me, and my mum would sit with me with her cup of tea. I would dip a ginger biscuit into her tea until they were soft enough to melt in my mouth and easy to digest, a ritual we shared until I could eventually manage to have my own tea and (non-soggy) biscuits.

 

 

In the last five years, I have come so far and have continued to build a life for myself that once seemed impossible. I have learned to drive, travelled to places with family, friends, and even alone—destinations I thought I would never see. I started this fulfilling project and am currently studying with the hope of attending university next year.

 

I know that not many people who are in the position I was five years ago are able to make the recovery that I have, which is why I will never take for granted how lucky I am to have been given this second chance at life. However, while I do believe I am in a fortunate position, I also know that I have had to work incredibly hard to get to this point in my journey, pushing the limits of my health to advance my recovery, both physically and mentally.

 

Which is why I am very happy to share that at my last consultant appointment, I was able to reduce my TPN to one bag a week—a huge milestone. For the past five years, I have been working diligently to reduce my reliance on artificial nutrition as I try to build up my appetite without making myself unwell. This has been one of the biggest obstacles in my recovery, but in the past year, I have made a concerted effort to prioritise my eating and my hard work is now beginning to pay off.


I am really excited to continue documenting this journey as I work towards eventually coming off TPN completely, something I have relied on to sustain me my whole adult life.


 

For the past week, I have been on holiday in the New Forest with my family, a time that has been incredibly special and poignant with this anniversary looming. Very kindly, my lovely mum treated me to an afternoon tea at the beautiful Chewton Glen Hotel, where we celebrated with tea, cake, and champagne.

 

Eating is a privilege and a joy. Even after all these years, I still wonder if I will ever get used to never needing to be hungry again! I don’t think I will ever forget what it feels like to be starving for two years. This makes me profoundly grateful, not just to be able to enjoy food but also to share the experience with my loved ones. Sitting down to enjoy afternoon tea at Chewton Glen was more than just a treat; it was a testament to the hard work and resilience that have brought me to this point.

 

As I move forward, I am filled with gratitude for the second chance I have been given, the support of those around me, and the resilience that has carried me through. I am excited about the future, ready to embrace new opportunities, and eager to share my journey with others through this project who might find hope and inspiration in my story.


This new chapter is just beginning, and I am ready to live it to the fullest - here’s to another 5 years (and many more!) of health and happiness!



Comments


Comments

Share Your ThoughtsBe the first to write a comment.
bottom of page