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My Diagnosis ( so far!): Stage 3 Chronic Kidney Disease - Part 2

Rachel Adam

Insta: @rach_hels88

Read Part 1 of Rachel's story here.

How did medics respond to your symptoms?

Initially, doctors treated me for what they believe was the problem ( and what I believed was the problem!).

The issue came when they were unable to explain why the symptoms kept reoccurring. Every A&E visit was the same - turn up, tell them the whole spider story, explain I didn’t think that was it - have an ECG, have a chest x-ray, have bloods done- sent home. They also referred me to Cardiology to have more tests on my heart- nothing.

How did the medics' attitudes change over time?

As time went on, doctors started to mention the words ANXIETY and PANIC ATTACK. I had never experienced any symptoms of anxiety , as far as I knew. 2019 had been pretty rough and I had recently gone through some difficult personal circumstances - was I just having a delayed reaction to these events? Were they manifesting physically and making me feel this way? From there on in, that was the narrative - what I was experiencing were ‘ just panic attacks’, it was in my head, it was nothing dangerous. Ok I thought - if this is the case - I can definitely beat this! I was prescribed a number of anti-anxiety medications and was referred for 8 sessions of CBT.

CBT was great- I recommend it to ANYONE! My therapist gave me strategies to manage my ‘ episodes’ - and I started to believe this was working. I do recall the therapist saying that he wasn’t fully convinced that my ‘attacks’ were a result of anxiety and that I should continue to pursue the medical route . We started to talk about ‘health anxiety’ and how it sounded like I had developed this as a result of what was happening - I mean who wouldn’t!? It still didn’t explain everything.

How did things develop?

Around the same time, my GP wanted to repeat some blood tests ( I think this was related to the medication I was on). Now, when I had blood tests in A&E, I never physically saw the results. They also weren’t available on the app I had that had some of my medical history. However, after this particular set of results (I think this was August/ September 2019) I was able to see the results myself.

I scrolled through the results, googling as I went to understand what each number meant and whether I was in ‘normal range’ or not. Everything seemed ok, until I reached a number labelled ‘GFR calculated abbreviatd MDRD’ it said ABNORMAL result and my result was well below the normal range. I quickly googled what this meant (yes, I had been told repeatedly not to google- but what choice did I have?) The result related to my kidney function and how well they were currently filtering- it didn’t look as though mine were doing much filtering at all!

I continued to look through the results - a few others in the same category were showing as an abnormal range.

I assumed (very wrongly!) that the GP would soon call me to discuss the results - no such call came, so I requested an appointment to discuss them. I was told there was no need and there was nothing to discuss. I said I had looked into the results and was worried - at this I was told in not so many words that I ‘ wasn’t a doctor and wouldn’t know what I was looking at.’

Ok I thought, fine. If they were really concerned, they’d surely be taking action. So, from there on in, I just lived my life as though I experienced bouts of anxiety and had ‘panic attacks’. I became really interested in CBT, even qualifying as a practitioner for young people myself and generally just became mindful of my mental health and did all I could to look after it.

I still had ‘ episodes’, they were less frequent, but I am honestly not sure if I was maybe just ignoring them more and, therefore, not taking such note of when they occurred.

Then lockdown happened. I loved lockdown! I loved being able to stay home and not have to worry about feeling unwell whilst at work or out and about. Strangely, the threat of a global pandemic didn’t trigger my ‘ health anxiety’ at all.

How were you eventually diagnosed?

Fast forward to July 2022. By this point, I had met my partner and we had moved in together. We were on holiday in Spain, when my feet and legs started to get really swollen. ‘It’s probably the heat’ I thought - although I’d never had an issue tolerating heat before.

The day we came home, I started to feel really unwell. It was an episode like no other. I stood in the queue at the airport panicking at the thought of getting on a plane and feeling so unwell. ‘It’s my kidneys, I know it is’ I said to my boyfriend.  I made it through the flight and was so relieved to be back home. The next day, I went back to my GP. My legs and feet were still swollen, but not as bad as they had been in Spain. I explained to the GP ( note- this was a new surgery as I had moved) what had happened at the airport and showed him photos of my swollen feet and legs during the holiday- ‘it sounds like a panic attack’ he said ( after skimming through my notes). Anxiety can cause leg swelling? That was a new one on me! I was prescribed ANOTHER anti- anxiety medication - I was now on 3.

I left baffled, frustrated and annoyed.

Fast forward the January 2023 - I had started to experience really painful and heavy periods - I went to the GP for some advice (if I am honest- I wasn’t too worried - periods can get worse with age!) The GP I saw was a trainee doctor, being supervised by a more senior GP. She ordered some blood tests to check a few things and I just liked her vibe a lot.

A few days later I got a call asking me to come back into the surgery to discuss my results - I was scared but also hopeful.

I saw the same lovely trainee - she said they were really concerned about my kidney function and asked if this had ever been flagged before. I started to explain my medical history from 2019, all of my symptoms, how I had been told it was ‘nothing physical’, but also that I has always been worried about my kidneys! She then did a urine dip test and asked if anyone had ever done this before- they hadn’t. The test showed very high levels of blood and protein in my urine- definitely not normal. In essence, my kidneys were not working properly at all, and had around 59% of the function they should have. Now, kidney function does very slowly decline with age, but I was 34 and this was not normal.

I was referred to a nephrologist - finally I was getting somewhere, finally the dots were beginning to connect. I loved the way my consultant nephrologist worked - she was so open, explaining everything and her thought process along the way. For anyone who has ever watched the medical Drama ‘ House’, I very much felt like I was in an episode with Hugh Laurie trying to deduce the cause.

At this point, the diagnosis was simple - stage 3 chronic kidney disease.

What was the next dilemma?

They had found the diagnoses but the CAUSE was what we were now looking for - what had caused this damage to my kidneys? There were no environmental or life style factors that could be the cause so my consultant started looking at auto- immune diseases.

In the background, I was, of course, doing my own research! Auto-immune really seemed like a likely culprit and a lot of the symptoms of some of these conditions matched up.

My blood pressure had always been a bit of concern - but no medic had ever done anything about it. I was put on blood pressure medication, because high blood can cause kidney damage ( and kidney damage can cause high blood pressure!)

I asked my consultant if she was able to see if my kidney function was abnormal in 2019. IT WAS!! It had been all along. The medical negligence I experienced is probably another story for another time…

Very quickly, I had a biopsy on my kidney. It revealed the suspected damage, but the cause was still a mystery. The sample has been sent for some further tests and that brings us to today.

How are you now?

My kidney function has stabilised, thanks to the medication I am now taking. It won’t ever get ‘better’ but it can be slowed, managed and kept stable. I am still waiting for the results of the further tests and really hope this will give me even more answers.

Do I still have ‘ funnies’? Yes , I do. Are they less frequent? Yes. But, since having a diagnosis and knowing the medication I am taking is actively helping the cause, I do feel so much better.

I do not doubt that some of what I experienced was anxiety and I do not doubt that I absolutely have developed ‘ health anxiety’- but I think anyone would who has battled trying to get a diagnosis- don’t beat yourself up over that!


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