When a routine procedure becomes an emergency

An event in 2014 changed my outlook on how I approached routine medical procedures, and to this day, I still have ‘white coat syndrome’ whenever I enter a hospital. This is my story of when liver biopsies go wrong.

Post-procedure in recovery.

My scariest 24 hours in a hospital

I have been in and out of hospitals for most of my life. It became the norm from an early age. However, an event in 2014 changed my outlook on how I approached routine medical procedures, and to this day, I still have ‘white coat syndrome ‘whenever I enter a hospital.

It’s not unusual to be prodded by anyone

When you have arthritis from 10 or 11 years old, you learn two things quickly. One, testing anything and everything is a part of everyday life and two, no test or appointment ends with just a result or diagnosis.

When I was young, I used to dread going to hospital appointments—not because of pain, being paraded in front of an army of student doctors like a lab rat, or fearing all the poking and prodding. But because it never stopped at ‘just a check-up’ or consultation. The number of appointments that ended with me being admitted to a ward that same day was surreal. To the point I started taking a night bag with me to the hospital. Whether it be to monitor me, trial a new drug, keep an eye on side effects, or save my parents’ several trips to the hospital. I never seemed to be able to just walk out after an appointment.

Until my 20s, any fear or phobias I had regarding hospitals was purely that, the fear of not coming home yet again.

Cause and effect

Those with autoimmune disease will know it’s never a clean fight in our struggle. Instead, it’s a series of battles within the war. The playing field is never level, and as soon as you think you’re on top of one symptom, another one emerges.

2014 was a low point for me with my health, possibly more so than the nightmare scenario in 2019. I was in my late 20s; I had been diagnosed with psoriatic arthritis a few years prior and was still adjusting to something else being added to my complex list of health challenges. I was back on methotrexate for the first time since I was a teenager, but my condition was far from controlled. I needed to use walking aids again occasionally. I was piling on the weight, in a lot of pain and depressed. To make matters worse, the methotrexate wasn’t just not working this time around; it was physically harming me too.

Anyone familiar will know that methotrexate is potent stuff. It is a form of immunosuppressive chemotherapy that can damage healthy tissue and normal bodily processes alongside the overactive immune system cells you are targeting. When I was taking it at 14–18 years of age, I used to have weekly blood tests. I no longer feel anything when blood is drawn from my median cubital veins, given the sheer number of needles in my arm over the years. As an adult, it’s once a month, primarily to check it’s not damaging my liver.

I tolerated methotrexate well as a teenager; however, in my 20s, that wasn’t the case. I would vomit every morning before work and be doubled up with stomach cramps, but such is life with autoimmune conditions. You come to accept the unwelcome side effects as the ‘greater good’ given what state your body would be in if left untreated. However, at times, it’s difficult to tell what’s caused by the disease and what is a result of the treatment.

‘The liver of an alcoholic’

I’ve had some pretty rotten experiences on medication, so I didn’t think much of it when I felt rather unwell. After all, I juggle a lot with aches, pains and related issues due to years of damage. But when I got the ‘withheld number’ call the day after a blood test, I knew something was up.

I was told that my ALT result was ‘slightly elevated’ and that I needed another test. ALT, or Alanine Aminotransferase, is a test regularly used to monitor your liver on certain medications. ALT is an enzyme produced by cells in the liver, and a high number can be an indicator of inflammation or damage in the organ.

Don’t quote me on the numbers, but I recall the first couple of tests being in the 60–70 range (normal is approximately 25–35 units per litre, depending on who’s assessing it). A few weeks later, it was in the 100’s. Methotrexate was stopped, and I was referred to hepatology. The numbers fell when the drug was removed, but they stayed high, varying between 70–150.

I had several follow up tests and scans carried out, and strangely the damage to my liver persisted long after methotrexate was withdrawn. After an ultrasound, I recall being somewhat deflated when the specialist told me that I had a ‘fatty liver’. I wasn’t shocked as I had gained weight whilst immobile, but I was 14.5 stone at my heaviest. Although overweight, it didn’t seem dangerously heavy enough to be causing such an impact on my liver.

At one point, I was told that there was some damage but no scarring that couldn’t be reversed (the liver is an incredible organ and capable of repairing itself to some extent). However, I’ll never forget when the doctor described it as looking similar to someone in the early stages of alcoholism. That was a real wake up call for me.

I have always been super healthy on methotrexate. I know it’s a treatment that has to be taken seriously, so I don’t touch a drop of alcohol and try and watch what I eat whenever I am taking it. So to hear that was a little frightening.

The memories fade, but the scars remain

As a precaution, it was suggested that I have a liver biopsy — just to confirm that the cause was, in fact, that of a combination of drug and immune response as opposed to anything untoward.

They explained the routine procedure — a local anaesthetic would be applied. Then using ultrasound to guide a large needle between two of my ribs, a piece of my liver would be removed for testing. It sounds just as invasive as it felt, I assure you. I wasn’t looking forward to it but knowing how often something is attributed to your chronic health condition, I was pleased that they were covering all bases.

The procedure was horrible. As simple as that.

I’m used to that sensation of being stung by multiple wasps that local anaesthetic gives you. However, it felt more uncomfortable on my ribs. What I wasn’t prepared for was that once the needle broke the skin, I felt everything! It’s a hard feeling to describe, like a burning pressure deep within your abdomen. Similar to what I experienced with lumbar punctures, except for this time, there was much more pain accompanying that feeling of pressure. The best way I can describe it is just as it was — like I was being stabbed.

Looking back, I felt for the poor radiographer and nurse assisting him. Clearly, they were not used to seeing somebody in that much discomfort. I remember the nurse saying, ‘it shouldn’t hurt you this much’ with a tinge of panic in her voice. I would say I was writhing around in pain, but at the time, I was acutely aware of the very long needle deep inside me. It must have been distressing for them too.

We’ll never know what went wrong there or why it hurt so much. I remember being given the option of more anaesthetic, but I informed the radiographer, as politely as I could given the circumstances, to get the procedure over with now that the needle was already in.

The next part, I remember feeling like it was happening in slow motion and a quick blur simultaneously.

Is anyone trained to insert a line!?

Laying in a sweat-soaked bed, I was wheeled out of the ultrasound room where the procedure took place and put in a bay with one or two others who were waiting to go in for routine scans. I had been warned prior that it was standard practice for me to be observed for an hour or two before my partner could collect me. Apart from the unpleasant experience, I felt fine. I was relieved it was over.

I was placed on my right-hand side, the side the needle entered and told not to move. The forms I had to fill in beforehand outlined that a small amount of bleeding was expected. A nurse came to take my blood pressure (BP) and a few observations and asked me how I was feeling. I explained it wasn’t the most pleasant of experiences, but I felt fine now. She said they wouldn’t keep me long.

The third or fourth time the nurse took my BP, she again asked how I was feeling but this time more quizzically like I wasn’t giving her the correct answer. I remember feeling thirsty, but I still felt ok. She told me my BP was a little low, and she would return with someone. A few moments later, she returned with a more senior nurse and explained that my BP was falling and causing concern. I again said I was ok, a little surprised by her comment and then no sooner had I reassured them, it hit me.

I suddenly felt faint. Clammy. I had started sweating again and felt tired. A few moments later, I remember the initial nurse gently shaking me, asking me to not go to sleep. ‘I’m fine, just a bit tired’, I replied, closing my eyes. The next time I opened them, all hell had broken loose.

All hands to the pump

I recall hearing the nurse say, ‘it’s still dropping’, ‘it will be a bleed’ the more senior nurse replied, ‘get a doctor — is anyone here trained to insert a line!?’. By this point, I recall seeing the concern on the other patient’s faces. Soon after, my cubicle curtains were closed.

There was some panic over where the nearest doctor was, and a third nurse had taken over. I remember her wearing a dark blue uniform, so presumably a Sister. I also remember her terrifying me with her stern manner whenever I closed my eyes. I just wanted to sleep.

Around this point, I asked the first nurse if she could tell my fiance that I loved her. I can’t tell you if I thought I would die, but I remember feeling this urge to pass the message on. I wasn’t in pain, and apart from feeling faint and sweaty, I wasn’t in any real discomfort. I just remember having this overwhelming urge to drift off to sleep. That, combined with the expressions on the medical professional’s faces, I guess made me feel like it was an appropriate thing to say at that moment.

As for what happened next, I can only tell you the snapshots I recall. A somewhat nervous doctor was trying to get a cannula in. I remember waking at one point to him saying to his colleague how he hadn’t done one since his training. I chose not to fight the urge to sleep at that point. I woke again to a porter rushing me down a corridor and the Sister explaining that ultrasound wasn’t equipped for my ‘situation’ and that I was being taken to a ward.

I can’t remember getting on the ward, but I remember coming round in a private space used as a storeroom. After all, they weren’t expecting me! A few hours and a lot of fluids later, I felt lucid enough to reach to my belongings and send my partner a text to come and find me at the hospital as something had happened, but that I was ok. I couldn’t tell her what ward I was on.

I later found out that staff had tried to call my next of kin but had called my deceased grandmother’s number for some bizarre reason. The forms I filled in before the procedure in the gastro dept. hadn’t reached the ultrasound team.

After the dust had settled

Unsurprisingly, it turned out that I had a bleed on my liver. Sometimes a vein gets nicked during the procedure and causes a lot more bleeding than expected. After a couple of days in the hospital and a lot of fluids pushed into me, I was fine. No surgery needed.

I don’t remember being overly scared at the time. It was more after the event that it shocked me. Once I was back home, I realised how serious it could have been.

In the years since that event, I have had lumbar punctures, and a test where needles are inserted into various parts of your skin (hands, thighs, feet etc.) and small electrical shocks are administered to test the muscle response. Both times, I am not ashamed to say that I requested my (now) wife present to hold her hand. Both times I sweated buckets due to stress and my body going into mild shock.

I can still have a blood test and watch the whole thing. That doesn’t bother me. However, that day, that liver biopsy changed me. I now no longer see any procedure or surgery as routine. I experienced first-hand how something minor can become life-threatening. How quickly things can change. How nothing can be taken for granted.

My future, hospital tests and routine procedures are forever intertwined, I can’t escape that. It’s the hand I have been dealt with. So what I must do, is find a way to manage my fear, to regain a healthy relationship with the treatment of my conditions again. One thing is for sure, however, I will never lay on a hospital bed before telling my wife I love her again.

Joel (aka ‘Joel vs Arthritis) is an Award-Winning Arthritis & Psoriasis Patient Advocate, Writer, Content Creator & Ambassador.

Specialising in pain, parenting and the mental health impact of living with chronic illness, he works with organisations as an ambassador, writer, campaigner, diversity & inclusion advisor and patient experience consultant to raise awareness and improve patient outcomes.

You can find out more here or at joelvsarthritis.co.uk.