Oh we’ve got to trust
one another again
in some essentials.

Not the narrow little
bargaining trust
that says: I’m for you
if you’ll be for me.

But a bigger trust,
a trust of the sun
that does not bother
about moth and rust,
and we see it shining
in one another.

~Trust – D.H. Lawrence~

I struggled to dry myself as I felt the blood drain rapidly away into my lower limbs. After three days of becoming increasingly unwell I had naively overestimated my ability to survive a shower. I had spent the previous 48 hours drenched in sweat which had soaked my hair, hospital gown and sheets. I was going to endoscopy that afternoon for a procedure and given a surgical washing sponge to make sure that there were not too many bacteria lurking on my skin.

My vision was fading fast as I threw a gown around my still damp body and figured I had just enough time to make it to my bed. Unfortunately my bed was in the process of being made! I staggered to a chair and put my head between my knees…and came to who knows how long later. One step and I flopped onto my bed, vomiting profusely. I had no idea that this was a God moment….fainting usually seen as more of an embarrassment than a miracle!

I spent the morning dizzy and nauseous, but it passed quickly while chatting to my visiting family. The miracle aspect only came to light that afternoon. While waiting for my endoscopy I was informed there was still a high chance of my procedure being cancelled. It was almost 5 pm and overtime cases were actively discouraged.

My gastroenterologist came by to see me and it was then that he was first informed that I had fainted that morning. After making sure that I hadn’t hit my head, within minutes they were taking me down to the procedure room. I was now considered urgent!! I would not have to wait until Monday. The registrar informed me the next morning that it was the best timed faint ever. I told him that it was a God moment.

I had doubted the wisdom of the Infectious diseases in stopping my antibiotics while I was still so unwell. However it was this that eventually resulted in me becoming sick enough to faint. I also doubted their decision to only give me Amoxy-Clav rather than the stronger antibiotics I had been on. From their point of view there had been no point in continuing such broad spectrum antibiotics as they had failed to get me better.

From my point of view if we hadn’t drained the infective area in my liver, antibiotics were probably not enough on their own. Without source control and a specific bacteria, random antibiotics were unfortunately only random.

But my ID registrar was on call over the weekend and on Sunday night the nurses told me that one of my cultures had come back positive and I was to be given a loading dose of Vancomycin that evening. So now we has a bacteria as well. Vancomycin was another level up from Pip-Taz and Imipenem!! Slowly things were falling into place.

I had a visit from my gastroenterologist on Monday afternoon, going through what he had found and done during my ERCP. He was honest, saying he had done everything that was possible for him to do. There was a very atypical area of duct or liver at the base of the second duct. It was soft and stretchy and able to be dilated, but there was no obvious pus. He had put a stent into this area to drain any discharge, which might be enough, but might not be. It was now I was going to have to just trust the process and let the tincture of time either heal or make the problem visible.

He planned to repeat my CT scan during the week and discuss the results with the radiologists and the surgeons so that they had a plan B in case I became unwell again.

I told him about having to sit up all night very breathlessness after my ERCP but unable to get a clinical review. He then told me about his own experience of being seen as difficult when he felt like his concerns weren’t being heard when his daughter was unwell. He had been very close to ringing the Ryan’s Rule phone number as his attempts to get answers were fobbed off. It had been a very traumatising situation for him and his sympathy and validation made me feel seen and heard. He had been where I was and he understood.

Another aspect of trust is trusting yourself…though this also has to be tempered with self doubt and listening to the opinions of others. When I started getting very unusual pain during my antibiotic infusion the nurses initially tried to convince me it was normal. I had to be willing to stick up for myself. I have had multiple cannulas and this did not feel normal. I knew they were annoyed but this was my body and I was not willing to risk complications from an antibiotic being infused into my tissues and not my vein.

Later I would find out that my very atypical pain was due to the two antibiotics I was having interacting and causing irritation of my vein. The nurses then worked with me to try to mitigate this…diluting my antibiotics, slowing down their rate, and giving more time between them. This didn’t fully resolve the pain, but it did help.

Then there was the visit from the gastro advanced trainee on Tuesday morning. He went over the plan to get a repeat CT, discussed slowly reducing my prednisone dose and then came out with the opinion that I couldn’t have an abscess because I wasn’t sick enough!! This was wrong on so many levels that it was almost ludicrous. I wondered if they suddenly became more circumspect in their opinions when the buck stopped with them once they became specialists. At the moment they were not the person ultimately responsible for decision making and so could come out with more maverick ideas.

Firstly, liver abscesses are well known for presenting subtly and therefore the patient may not appear incredibly systemically unwell. Secondly, I was on immunosuppresants and IVIGs and was more likely to present atypically. Lastly, where did he get the right to tell me I had not been unwell!! He had only seen me a few times and rarely talked to me about my symptoms. He had no idea, so him telling me I had not been unwell only made him look stupid. I rolled my eyes after he left and complained to the wardsmen about how some doctors are complete idiots.

I figured he would not be deciding my treatment or discharge and I would bide my time and be patient. If they discharge me after inadequate treatment I will just have to be self aware and not present too late. After all, there is no consensus in the medical literature on the best management of liver abscesses anyway. Everything is a best guess for each individual patient and their specific set of circumstances.

I would talk to the junior registrar a couple of days later about this statement and he reassured me that the senior registrar did think I was very unwell. He presumed that he had been merely trying to make me less anxious by telling me that I could be much sicker.

After my previous experiences of medical trauma it was often difficult to trust my doctors. Did they really think I was truly unwel, or did they think I was only stressed about the possibility of being very unwell? When my registrar told me that my gastroenterologist was very invested in sorting out what was wrong it put my mind at ease. He was interested and he believed me. When I fainted it didn’t change what he thought already but it made it possible for him to make me urgent. God is slowly teaching me how to trust other people again, as well as showing me that I can always trust in Him.

Often the hardest thing in a long and arduous illness is having trust in the process. The process of getting a diagnosis when nothing may be ckearcut. The process of deciding on the best treatment when nobody has seen a patient like you before. The patience required while waiting to see if the treatment will work. Not letting fear take the place of peace. Not letting the trauma from my past experiences colour what is happening to me now.

I can choose how I respond to what is happening around me. I can chat to my cleaners and smile at the people taking my blood and delivering my meals…one of these activities is more pleasant than the other but strangely neither of these services get many smiles. Maybe one is seen as a menial task not worthy of recognition. The other is seen as associated with pain. But both of these are invaluable in our recovery. One guides treatment decisions and the other is essential to keep our bodies as strong as possible.

Often all I can do is diffuse the fragrance of God’s love around me through smiles and words of encouragement. I educate the nursing students in the importance of their job. They will often know their patients better than the doctors as they care for them for hours at a time, rather than just popping by for a couple of minutes. Their patients may be completely reliable on them to advocate for them.

There will always be suffering in this life. What we need is to hold onto hope despite our frailty and live out the love of God in the way we live. The highlight of my hospital stay was the delightful lady delivering my meals that told me I was the loveliest person in the whole hospital. In return I thanked her for the joy she spread while providing us all with the sustenance needed to get better. Every person is important and every person can be a blessing.

But if it warms
your heart’s quick core
why then trust it, it forms
one faithfulness more.

And be, oh be
a sun to me,
not a weary, insistent
personality

but a sun that shines
and goes dark, but shines
again and entwines
with the sunshine in me

till we both of us
are more glorious
and more sunny.

~Trust – DH Lawrence~