I grew up being marvelled by movies and rollercoasters…little did I know that the last 18 months would match both of those. April 2017 – I had it all, extremely fortunate to have a successful career, amazing and loving family, nice house and car, fit and healthy and a wonderful and crazy social life with great friends. However, in a blink of an eye, I came close to losing it all and to something I had never heard of. Before I explain everything, I am happy to say that I have come out the other side, able to get back on with my life, and certainly a more appreciative person for it. I can honestly say though, that whilst nothing can prepare you for the physical pain of a Severe Acute Pancreatitis attack, the mental battles are even harder and the effect on not just the person struck down but those loved ones around you is indescribable.
When and where did you first have the pancreatitis attack?
In 2017 there were some major birthdays in the Hughes family household – my wife and I turned 40, our son 13, our daughter 10 and so we had booked a family vacation from the U.K. to New York City. I was fortunate to manage the first half of the vacation and had the major joy of taking the kids to see the Statue of Liberty and the Empire State Building. Half way through the vacation, my world imploded. I woke up in the hotel room during the night in major pain in my stomach area. Bent over double, shaking and sweating with heat and pain, I sat under a cold shower for several hours and then slumped in bed for the day. I had no idea what was going on. At first, I thought it must just be food poisoning but as the pain got worse I realized it must be something more serious and my mind was whirring.
Hours later, having been seen by an on-call doctor, I was rushed to NYU Langone Medical Center with a severe Acute Pancreatitis attack with lipase levels around 27,000. My poor wife had to juggle supporting me in immense pain as I waited for a diagnosis and treatment and having to leave two young kids in a hospital waiting room in the middle of the night. With some superb treatment I made it through the night and the next few days, however my organs had taken a bit of a battering and there was a risk of several organs failing. The cause of all this was, despite being fit and healthy and having no risk factors, my gallbladder had fired gallstones into my pancreas, blocking it initially and then bursting out like a volcano poisoning my body with the chemicals that had built up in my pancreas. Slowly as I stabilized, it became time for my family to fly back home at the scheduled end of our memorable vacation (without me) – a parting that none of us wanted.
You were in NYU Langone Hospital by yourself, in a different country, away from your family. What was that like and what went through your head during this difficult time?
Over the next few days and nights, whilst I was no longer in a critical condition, I seemed not to be getting any better – the pain had subsided somewhat but was still racking my body into spasms despite the morphine and other drugs I was on and I was banned from eating or drinking. The doctors felt that the best option would be for me to have my gallbladder removed however that would have meant 6 weeks minimum in the U.S. post operation before I could return to the U.K. Therefore, the plan was if I could improve enough, then I would return to the U.K. for the operation, however this seemed to be a far-off distant hope as nothing seemed to change. It is at this point that I think I had my lowest moment – those mental battles almost became too much.
Only now can I start to admit how much I failed and let the demons take over and in that lowest point it was not failing organs or the pancreatitis that came the closest to taking my life but my own despair. The pain, loneliness, failing body, weight of not getting better, more pain and feeling like I had fallen down a dark hole with no escape almost won. I remember looking across at all the wires and tubes coming from machines into my body and wanting to wrap them round my neck, roll off the bed and end it all as I felt I couldn’t take it anymore. The thing that pulled me through were thoughts of my family and the need to be strong for them.
The next few hours were miserable as I realised just how much I almost failed them completely and devastated their lives not through illness but my own mental fragilities. They say when you hit rock bottom the only way is up and I certainly understand that now. Fortunately, over the next few hours unprompted messages from family and friends turned giving up to fighting upwards and a fire was lit to drive me through the next few days to be close to being well enough to fly home. Each day in the hospital was filled with tears of pain and frustration as I willed my body on to escape the horror of being in hospital in a foreign land. I will freely admit that I took a huge risk on that journey home – the doctors were trying to convince me to stay a few extra days but I needed to be home and away from the nightmare that pancreatitis had brought upon my life.
What did you do to gain normalcy and did you have any more attacks?
Back in the U.K. the love and support I received was unreal and I slowly got back on my feet and tried to resume some semblance of life despite some ongoing pain and obvious weakness. I somehow made it into work, more as a show of strength to my worried family. The consultant I got referred to, (who bizarrely had become a doctor as he had lost a family member to pancreatitis), cautioned me with the words my gallbladder was like a ticking time bomb and could release a torrent of gallstones at any time and booked me in to have it removed. Stupidly, I thought if I made it through the U.S., then I could face anything and tried to put it to the back of my mind and carry on. A few days before my scheduled operation, I started to get those sharp bursts of pain in my stomach which increased in intensity quickly. Within just a couple of hours the pain was above anything I experienced in the U.S. and was rushed by my wife to Queen Alexandra Hospital in Portsmouth.
I drew a few strange looks as I collapsed out of the car, was violently ill in the bushes and then crawled into a wheelchair. I impressed even more with my skills as whilst waiting to get checked in, I collapsed out of the wheelchair and stomach crawled to the nearest toilet and lay there shivering, convulsing in pain and retching. Needless to say, it was quite obvious that I was in a bad way and I was sped through the normal triage which turned out to be much needed. In the U.S. from initial pain to worst pain was about 15 hours, this time it was around 3 hours. Not only was I in the most severe pain but also multiple organs were in the process of shutting down. Fortunately, due to the skills and swift actions of the medical staff they managed to stabilise me and get as much morphine as possible inside me to at least make a small indent in the pain. I cannot describe the feelings I felt at this stage – it was all too extreme – feelings of individual organs setting on fire and then shutting down, the world around me getting dark and fading out, and a surreal feeling of my body and soul giving up. My consultant happened to be on-site as well and had taken over and upped the morphine above the levels that could be administered normally – a sign of how much pain Acute Pancreatitis causes and even then it didn’t stop my body spasming uncontrollably in pain but at least made me woozy enough to mean that in-between pain waves I would at least stop screaming in agony.
With your second attack, worse than your first, what was the plan of action?
As my body calmed down a bit over the next couple of days, it was decided the risk of delaying surgery was too great – even though my fragile state put me a less than ideal position to go under the knife, the risk to my life was greater from leaving my gallbladder in me in case it spewed out another gallstone. I had ever so narrowly come away from that attack without losing my life or an organ and it was highly likely that another attack would finish me off completely. Fortunately, the surgery was a success, however my body managed to collapse in recovery and so my return back to my family was delayed by a couple of hours whilst they stabilised me again! All that remained was for an ERCP operation a couple of days later. The procedure would make sure there were no more gallstones floating around that could cause another attack, however the procedure itself could cause a pancreatitis attack. In my mind, the risk was worth it as I could not going on living with the threat of an attack hanging over me and so signed the forms and had the operation. Amazingly, later that day I was released home!
Being released from the hospital, what was the prognosis of your recovery?
I will never forget the feeling of that journey home, I had to be pushed in a wheelchair and half carried to the car. At points during the hospital stays in both the U.S. and the U.K. I was told everything from I was unlikely coming out, would be coming out but not for a long time, I would be able to come home but be bed ridden, be able to get back to normal but no exercise and restrictions on eating and drinking. Amazingly I was going home with very little long-term effects from it all. Doctors told me to me steer away from full fat dairy in large quantities, expect morning sickness for a couple of years, expect odd eating habits and it was going to take time to recover but that was it.
Describe what it was like going home to your family after your surgery.
I cried with relief all the way home and then could not get out of the car. The sheer enormity of it all was almost too much – coming close to losing my life was not the hardest bit, nor was the pain but almost never seeing my kids again was the hardest thing ever. To be able to come home to them again was the best gift I could ever have. I staggered out of the car, too weak to really make it along the drive and stumbled through the front door. Hugging my kids with my wife by my side and Mum in the house – if the darkest moments of physical and mental breakdown are what hell is about, that moment was what heaven is about and I think for the next 30 minutes I didn’t stop weeping uncontrollably.
During your recovery, did you use any mantras or anything that helped further your process?
The mantra that kept moving me forward once I decided that pancreatitis wasn’t going to claim my life was: “When something bad happens to you, you can do 1 of 3 things…let it define you, destroy you or strengthen you. Get up and just keep moving.” And so that was I did. A month after being released and given the all clear, I jogged 10K (6.2 miles). Over the past 18 months I have been getting stronger physically, went quickly back to work (leading portions of developing the new air traffic management system for the U.K.).
In 2018 I’ve run over 1300 miles and counting! This is only a reflection of the huge support I have had from friends and my running club – less than 18 months from being so ill to a marathon is not too bad (seeing as the most I could continuously run before falling ill was 10K!). Life has definitely now returned to normal and I am fully participating in family life.
You’ve accomplished so much since your attack and surgery! How do you feel now and do you fight any other battles?
The physical side is only half the battle, the mental scars are still ever present. The first family vacation post my illness went well, however there were a few tears during the week and the kids were pretty overcome with emotion on getting on the plane to fly home at the end as the time before that they had traveled back without me as I was still in hospital. There are nights where I would lay awake panicked that another pancreatitis attack would happen (even though the root cause had been removed) and more so I suffered from bouts of mild depression about how much I felt I had let people down by being ill, how I felt vulnerable and self-conscious of my scars and being someone who had suffered from a disease.
All of these feelings were irrational, but nobody can convince you that at the time. It took a lot of support from those around me and some wise words to constantly be pounded into my ears: “No matter how down and broken you feel, your family and friends will love you no matter what….don’t ever feel you are letting them down” before I could begin to believe in myself, feel normal and not feel like I was a failure to my family. The other thing I had to come to terms with was being affected by a disease I had never heard of – there seemed to be little guidance as to timelines for recovery, how to act, how to feel, etc and so having had such intensity of focus whilst in hospital. I now found myself drifting in a mire of uncertainty and no guidance on how and when to claim closure and move on.
How did you find out about the National Pancreas Foundation and how has that changed you?
So what is there: there are forums on Facebook and other online platforms where those suffering or having suffered from pancreatic diseases come together, however these tend to be full of emotion and conflicting advice. Charities giving help and support are few and far between. However like a lighthouse in the darkness I came across the National Pancreas Foundation (NPF). Whilst this is a U.S. based charity, this is an organization that not only raises much needed funding and awareness to help fight pancreatic diseases, medical advances, support to those affected and their families but also opened me with welcome arms even though I am on the other side of the Pond. I have learnt more about pancreatitis and pancreatic cancer and how this affects others and learnt I am not an oddity and it is not a failure to be struck down with a disease. Inspired by their work and their desire to help others, I without too much hesitation signed up to run the 2018 Marine Corps Marathon with Team Pancreas and a whole new chapter on my life began.
I am proud to say October 28, 2018 I ran and finished the Marine Corps Marathon for the NPF (and extremely proud to say my wife ran the 10K). The emotion of running such a distance, in such an inspirational event for such a great cause was amazing. Add in the journey that I have made, being able to prove to the family I was ok and meeting some others on the Team who have been affected by pancreatic diseases meant that at times I felt light as a feather, however that I also cried for many miles in joy/relief/inspiration (not a good look with photographers around). For me, it wasn’t just 26.2 miles of tarmac, but 26.2 miles of redemption and feeling like I was breaking free from the horrors of what I had been through with every step.
Not only did this light a passion inside me to raise awareness and raise some money (my kind friends had helped us raised over $2,600 for the NPF), the group of runners and organisers involved have truly inspired me. I am truly lucky to have survived my ordeal relatively ok, as I have bonded with this group the level of support amongst us all is all consuming as much as finding out how others themselves or their loved ones have been affected has been heartbreaking. I have often cried tears at some the events that they have endured over the last few months and then some more as I have felt guilty that I in some respects have been so lucky. What it has done is made me more determined to seize any opportunity I can.
Why was running the Marine Corps Marathon so important to you and where are you now mentally post marathon?
So why was the Marine Corps Marathon so important to me – I am driven massively to raise as much awareness and money as I can for the NPF, to help others who may find themselves in the same position as me and my family. But for me personally, I hoped for some closure, to be able to put to bed some demons and perhaps feel less failed and vulnerable and perhaps a bit more invincible.
I wanted to do well for all the friends and family that have supported me on my rollercoaster and my running club and local running community that have helped my running get to this stage. Most of all, and the thing that kept me sometimes crying as I run, I want to do my family proud and perhaps repair the damage my failing body did to my wife and kids. The pain and emotional turmoil I put them through by being so ill I can never take back and will regret forever (even though that inability to forgive is all in my mind not theirs). Hopefully I have proved to them that I can be the strong Dad and Husband that I was before and maybe show that through love and resilience no matter how far down a hole you fall, you can come back out and achieve great things.
Mentally now, I feel stronger to face the future and am no longer embarrassed to have suffered a disease. I still don’t feel I have fully overcome the guilt, feelings of “why me”, the fear of another attack occurring, but I feel my lust for life is stronger than ever and I know I am blessed with an amazing group of people around me that means I will never be alone no matter what life throws at me. I also feel mentally strong enough now to not only talk about my experience but a desire to help others through it all, and am hoping to stay engaged with the NPF and perhaps get the opportunity to help someone else in the way the NPF has helped me. An acute disease or chronic illness is one of the hardest things to deal with, has certainly re-shaped my life over the last 18 months, but with the help of others you can make it through….and maybe like the movies even run a marathon!