#adam at 8am the very next day: *acts like it never happened*

[veerbles]

my self indulgent dream fic is a canon divergence where adam bought an old secondhand nokia phone when he moved into st. agnes at the end of trb and ronan started texting him at random to spite gansey and declan, whose texts he never answers, and to spite adam, who has a limited texts plan and is anxious about it (although literally no one else ever texts him), and also because he's pathetically pining.

anyway. series retelling where adam and ronan grow closer through texts because being honest feels less terrifying through a screen

[crispturquoisewater]

This blog begins where the end of my journey should have been, but instead, it looks evermore likely, and evermore hauntingly, like it is in fact, just the beginning.

I had imagined that after four months of brutal illness, a multitude of infections, and endless other issues, that the turning of the new year would entail a welcome wave of freedom from hospital, god-awful doctors, and the hell that I had been staggering through in order to try and get better. Instead, the New Year has brought new challenges, the continuation of unreseolved illnesses, and even worse, a hightened sense of arrogance and narcissism from certain doctors that make this journey utterly unbearable.

Whilst writing this first post, I am passing an astonishing amount of blood, my back hurts, my bones feel like they’re broken they’re so painful, my feet are swollen and hard to walk on, and despite all of this, my doctor will not refer me to a nephrologist because it is “not his job”. I shall come to explain.

You wonder; when doctors took an oath to act within their patient’s best interest at all times, did they ever intend to adhere to that? Did they start off well and distend into a world of atrocity and cruel narcissism, acquiring a raw sense of vulgarity along the way? Either way, his leaving me to get sicker, in order to prove a point, is abhorrent and negligent.

Here’s what happened this week...

About 6 months ago, I started peeing large amounts of blood. Sometimes the urine sample would show infection, sometimes it wouldn’t. I got treated over 8 times with antibiotics, but after three months of repeated bloody urine, agonising pain in my back, swollen feet and a distended belly (in my opinion everything pointed to issues with my kidneys), and no infection showing, I told the surgery that I thought it was time that I was referred to a specialist - because constantly pissing blood is surely not normal. It’s beggars belief that after months of bleeding my doctors’ didn’t take the initiative to refer me themselves or even try to look into the issue further - instead of keep sending the sample off for cytology and getting the same results.

I got referred to Urology - even though the symptoms suggested it was my kidneys and the doctor actually asked if I had ever seen a nephrologist, they only referred me to urology - and after being throughly checked, the urology consultant sent a letter to my surgery and asked the GP to please refer me to nephrology, because the bleeding is clearly not right but is not coming from my bladder.

What happened next is, to say the least, astounding.

After spending a morning in hospital earlier this week (as many days are spent, now), the blood results showed that my white bloods, neutrophils and inflammation markers had raised from bloods taken 10 days before (I was in hospital for a ten-day follow-up because the week before I had developed a bad rash from new drugs I am taking for adrenal insufficiency). I said to the ER doctor that I had started passing loads of blood again that day (it comes and goes), and asked him to do a dip-test. He refused. He said that he didn’t want to give me more antibiotics and therefore, he didn’t want to test the urine to see if there was an infection. 🥴I don’t want anymore drugs. In fact, at this point, I think it’s probably dangerous to give me more antibiotics when they’re clearly not working. But surely, it’s not right for me to be passing so much blood and for the doctor to not even acknowledge it or try to find out what is going on. In fact, he didn’t even mention it in his discharge letter. I was happy not to spend any longer in hospital, but I left feeling slightly confused and, yet again, defeated. I find it bizarre that my bloods are showing an infection, along with bleeding profusely and yet I am told it is normal. I hate to dispute it, but I raised my questions, was told that the rise in bloods were due to my drugs (even though through multiple infections my inflammation markers have never risen and I know it isn’t my drugs because my dose has gone down, now up), and left.

If there is one way that this horrendous period of illness has made me feel, it’s defeated. As well as a feeling of being gagged and silenced and as though I could be screaming into the abyss, telling the doctors what is wrong, whilst being patted on the head, with a derisive smirk plastered across their faces, as they snigger and repeat, ‘there, there’. It’s been emotionally, physically and psychology horrendous.

After my midweek morning in hospital, I spoke to my GP that afternoon. I needed to ask him to make the referral to the nephrologist, as requested by the urologist in the letter. Nothing is ever done off the surgery’s own backs - even blood results that require attention takes for the patient to call up and prompt them to be looked at. I had called earlier in the week to ask for the referral to be made to the same hospital that I had been seen at for Urology, but I was told by the secretary that I would have to speak to a doctor for the referral to be made. Queue the 8am rush, and over 100 phone calls to try and get an appointment.

So, after three days, on the afternoon of the morning I had spent in hospital, my GP called me. Immediately, his tight, clipped tone was ready to bite. I explained that the Urologist had asked the surgery to refer me to nephrology in the letter and asked for the referral to be made. However, before I could finish my sentence, he told me that there was no letter on the system. He clearly had not looked. I explained that there was definitely a letter on the system because I get a copy and the secretary had printed their copy two days before, on the Monday. He looked again and miraculously, he found it, but not without making comment that it was in the “wrong” format. Of course, that was the reason.

I sat quietly whilst he read. And then, with an outraged scoff, he angrily spat that the referral should have been made internally and that it was solely down to “abject laziness” from the hospital that it had not been done. He told me that it was not his job to do it and, despite me bleeding heavily from what looks to be my kidneys, being in excruciating pain and feeling very sick, he told me that he would send the letter back to Urology and tell them to do it themselves. I was dumbfounded. But as ever, as with many who have had to undertake the constant battle of dealing with doctors through complex illness might be familiar with, I had to be the one to keep the cool head and stay calm.

I told him that when I had the conversation with my urology consultant, that she said it was for the surgery to make the referral, so I understood it was for them to do. He replied “absolutely not” before accusing the hospital of “workload shifting” and telling me that patients “choose to believe” that it is for the surgery to make the referral to another specialist. As it stands, I’m pretty sure that when one specialist has finished with you, the discharge letter has to come back to the surgery and the surgery has to be the coordinator, to refer you to the next specialist. But my GP was adamant that the hospital was lazy and useless and that they were the cause of any delay I might suffer.

Given how ill I have been, the amount I have been through, being immunosuppressed and any infection potentially being critical, I was flabbergasted that he was refusing to make the referral because he wanted to prove a point. I explained that whilst the two (the hospital and the surgery) disagreed, I was the one stuck in the middle whilst getting more sick. He said “I know” but told me that they had to learn to do it right.

I emailed the hospital the next morning, telling them his opinion and begging them to please make the referral. I followed up this email with a phone call on Friday morning, but as yet, have heard nothing. It’s always such a battle, and that, along with the already horrendous and draining existence of illness and constant hospital, makes everything so much worse. Multiple times I have told the surgery I am struggling with the stress of all of this, but despite offering help, or even acknowledging my concerns, they continue to play me like the ball against their two bats.

It’s Saturday evening and I am bleeding so heavily that I’m having to wear a sanitary as if I’m on a period. I feel sick. I’m in pain. And I have absolutely no idea where to turn anymore. Family have told me to go to ER but they will simply tell me that I’m waiting to see a specialist, which, currently I’m not because the referral hasn’t even been made.

The day after speaking to that GP, I spoke to another one. I told him that I needed my urine dipped. I handed in my blood-drenched urine and got told there was no infection but that it would be sent away to cytology anyway, just in case. I wonder what the protocol for these doctors is, when a young female patient is bleeding continuously, at times of no infection, with raised white blood counts and inflammation markers? Because all I am being faced with, is silence. I don’t even have the confidence to go to hospital anymore, because I feel as though I will be ignored.

And so, I am sitting here, desperate for the bleeding and pain to stop, but with no idea how.