My Arthritis Story

When a routine procedure becomes an emergency

My scariest 24hrs 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 the age of 10 or 11 years old, you learn two things quickly. One, testing of 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 fear of 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 and keep an eye on side-effects or to save my parents a number of trips to the hospital. I never seemed to be able to just walk out after an appointment.

Until my 20’s, 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. 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 that played out in 2019. I was in my late 20’s, 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 was needing to occasionally use walking aids again. I was piling on the weight, in a lot of pain and depressed. To make matters worse, the methotrexate wasn’t just simply not working this time around, it was physically harming me too.

Anyone who is familiar will know that methotrexate is potent stuff. It is a form of immunosuppressive chemotherapy which means it can damage healthy tissue and normal bodily processes as well as the overactive immune system cells you are targeting (note, I am not a doctor or medically trained). When I was taking it at 14-16 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. As an adult, it’s once a month. This is primarily to check it’s not damaging my liver.

I tolerated methotrexate well as a teenager, however, in my 20’s 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, I admit, 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 when I felt rather unwell, I didn’t think much of it. After all, I juggle a lot with aches, pains and related issues as a result of 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 to have 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 lots of follow up tests and scans carried out and strangely the damage to my liver persisted, long after methotrexate was withdrawn. I recall being rather deflated after an ultrasound when the specialist told me that I had a ‘fatty liver’. I wasn’t completely surprised as I had gained weight whilst being immobile but at my heaviest, I was 14.5 stone. Although overweight, it didn’t seem dangerously heavy enough to be causing such an impact on my liver.

At one point, I was also 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). I’ll never forget when the doctor described it as looking similar to someone who was 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 whenever I am taking it, I don’t touch a drop of alcohol and try and watch what I eat. 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. Although 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. In fact, the best way I can describe 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 at both the same time.

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 beforehand that it was standard practice for me to be observed for an hour or two before my partner could collect me. Apart from the unpleasent 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 right answer. I remember feeling thirsty but I still felt ok. She told me my BP was a little low and she was going to come back with someone. A few moments later she returned with a more senior nurse and explained that my BP was falling and it was causing concern. I again said I was fine, 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.

It was around this point that I asked the first nurse if she could tell my fiance that I loved her. I still don’t know if I fully thought I was going to die but I do remember feeling like it was the closest I had ever come to it. 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 rather nervous doctor 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 to not 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 that was being 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 Anita a text to come and find me at the hospital (I had no idea what ward I was on) as something had happened but that I was ok. Apparently staff had tried to call my next of kin but had called my deceased grandmother’s number. The forms I filled in prior to the procedure in the gastro dept. hadn’t reached the ultrasound team.

My wife (fiance at the time) took his photo in the hours after the procedure

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. A couple of days in the hospital and a lot of fluids pushed into me and 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 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.

My future and hospital tests and routine procedures are forever intertwined. I can’t escape that. It’s the hand I have been dealt with. 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 certain, however, I will never lay on a hospital bed before telling my wife I love her again.

9 Comments

  1. Sounds absolutely horrendous, and I hear you with ptsd with doctors and hospitals. When my fentanyl didn’t work after having my femur lengthened 2inches and pelvis broke in 3 places, was not a good way to find out pain relief doesn’t always work on me.

  2. Joel, that sounds truly awful. I hope that experience is not repeated.

  3. Wow. Scary. All the best to you Joel.

  4. Strong Joel 💞💞💞💞

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.

About the author

Joel Nelson

Joel Nelson

Joel has lived with numerous forms of arthritis most of his life, with the onset when he was just 11 years old. In 2019, Joel created his blog, JoelvsArthritis to share his experiences, raise awareness and to be an advocate for those with arthritis and other autoimmune conditions. In his short writing career, Joel has written for a number of leading autoimmune and disability charities and is a community advocate and writer for Psoriatic-Arthritis.com. Read his arthritis story here: https://joelvsarthritis.co.uk/my-story

View Full Profile →

Subscribe

Like the content? Become a supporter and help keep the lights on:

BMC logoBuy me a coffee