Smiling Clare

Honestly right now life feels like a merry-go-round of health problems and I wish I could make it stop and get off the ride!

It’s been non-stop this last few months with appointments for tests, physio, occupational therapy, annual reviews and both routine and emergency GP appointments. I’ve been lucky to get a week between appointments, in fact one day I had two appointments in one day; and one of those was on the phone in the back of a transport ambulance on my way home from another hospital appointment – definitely a first!! It has been quite an exhausting time.

There’s also been a lot going on in my family, meaning at times my Mum hasn’t been at home at all to help me, so it has all fallen to my Dad and sister. Obviously it would be during one of these times that I became very unwell and my Dad had to take time off work to look after me and take me to the doctors. It turns out a kidney infection is very painful, makes me feel really unwell and really knocks the stuffing out of me. I was given the strongest antibiotics they can prescribe in the community and told if I didn’t feel any better or got worse in 48 hours I should go to Accident & Emergency. Thankfully I did start feeling a bit better and avoided a trip to hospital, but it has left me utterly exhausted.

Four weeks on from that kidney infection and I spent one Saturday night in agony. I got up at 6:30am because there seemed little point staying in bed unable to sleep because of the pain. We rang NHS 111 early that morning and were given an appointment with the Out-of-Hours doctor at my local hospital. They were concerned given my history; the back pressure they found in my kidney back at the beginning of the year, and so I was sent to Accident & Emergency (A&E). There I spent the next 9 hours, with no pain relief or my usual medications (I foolishly hadn’t taken them with me as I genuinely did not expect to be at the hospital long). I had bloods taken, provided a urine sample and was then sent for a CT scan. I wasn’t at all impressed by the nurse taking my blood; I warned them I have a tendency to faint (it seemed important given I was already having dizzy spells just sitting in my wheelchair in the waiting room!) and their response was “Well you’re sitting down you can’t go far”, kudos to my Dad who held me up and then managed to move to shift my feet so he was cradling those at hip level until I felt less likely to faint after the blood test! It took about 3, maybe even 4 hours after that CT scan before we saw the doctor again. In that time I was sat in my wheelchair in the waiting room, in an awful lot of pain, shivering/shaking, getting dizzy and struggling to stay conscious. At one point I had tears streaming down my face, it was all just too much.

When I was finally seen again, I was told I needed to be admitted for IV antibiotics as my infection markers were high, and that I’d be seen by urology. I then had another long wait in a different waiting room before finally being sent to a room with a couch I could lie down on while they put a cannula in and started IV fluids. And then waited for the urology doctor to arrive; when he did I think things moved quite quickly – my memory is rather hazy by this point, I remember laying there with Dad holding my hand telling me he wasn’t going anywhere and that I could close my eyes and rest, as I was struggling to keep my eyes open – I was admitted to a ward at 8:40pm that night.

My first ever hospital admission. My Dad went home to get me some pyjamas, my medications etc. and seemed to be back in no time at all with my Mum who hadn’t seen me since that morning. I was hooked up to IV antibiotics and paracetamol, given a anti-clotting injection, had a covid test and a test for MRSA as well before one of the nurses helped me into my pyjamas. I was nil by mouth, as they planned to do surgery the next day. My temperature spiked again during the night which meant more blood tests, cool compresses & my vitals being checked more often. I can’t fault the night staff that night, they were brilliant.

The next morning I saw the urology team; I had severe hydronephrosis (meaning my kidney was very swollen) and an infection. The theory was that the original kidney infection had never fully cleared, the antibiotics had dampened it down but as soon as I stopped taking them the infection could ramp back up because there was still infected urine in the kidney which couldn’t drain away. Essentially my kidney was acting like an abscess and it needed draining. There were two options on the table: a nephrostomy (an opening between the kidney and the skin, which allows a tube to drain the kidney) and a ureteric stent (a thin, flexible plastic tube which is curled at both ends to avoid damaging the kidney and urinary bladder and to prevent it from dislocating). The team decided a stent was the best option given the urgency, and so that afternoon I went to theatre to have one fitted. I came round in so much less pain it was amazing.

I have to credit the staff, particularly the theatre team who showed interest in my underlying conditions and didn’t just dismiss them. Yes I had to keep explaining that it is normal for my heart rate to be high, but otherwise there was a general basic understanding of PoTS and of hEDS.

I was kept in overnight, on IV fluids and antibiotics, given another anti-clotting injection and had another blood test at 6am the next morning. When the urology team came round that morning they were pleased with my progress, and provided the latest blood results showed an improvement on the last I would be allowed home – and I was!

Coming home was exhausting. And there have been many more challenges than I expected there to be; from being unable to sit myself up in bed, to the discomfort that comes with having a ureteric stent. But I am now slowly recovering, the bruises from the blood tests, injections and cannulas are healing (although one is still particularly painful), I’m starting to move a bit more easily and am getting used to the discomfort and strange sensations that come with the stent. I should be seeing a surgeon in four weeks time to discuss the full repair which needs to be done at a later date to fix the obstruction and get rid of the stent.

In the meantime I’m aiming to get plenty of rest and to recover enough to attend a family funeral, then my long awaited neurology appointment which I had to delay due to this hospital admission. I hope to publish a few posts I’ve had in my drafts for a while for ME & EDS awareness month too; all providing things continue to improve and I have the energy to do so. But for now, resting is my priority.

Strange as it seems I don’t usually worry about my health or test results too much; test results usually come back normal & for the most part I seem to know how to manage my health to keep it at it’s best given everything that’s going on. I worry more about having the tests than the results of them! It’s also unusual for me to hear worry in a doctor’s voice when they speak to me; confusion is common because lets be honest my body seems to be a bit of a mystery to most doctors. But worry isn’t something I usually hear.

So you might be able to imagine how worried I was when I received a phone call from my General Practitioner (GP) the day after an ultrasound scan; the scan was arranged to see if we could find a cause of the bladder pain I keep experiencing. However what we discovered was something of a surprise: my bladder appears fine in the scan. But it showed one of my kidneys is swollen, which sparked something of a panic (or at least the most concerned I’ve heard my GP sound in a long time!).

Urgent blood tests to check my kidney function had to be done that day, and I tell you it was a long weekend wait for the results which thankfully came back normal on the Monday morning. But it’s not the end of it, an urgent referral to urology has been made and we wait to see what they have to say.

The thing is though, is it time to worry when my GP sounds worried? Or should I be more worried in general?

My health throws up so many obstacles and the odd anomaly now that I don’t go to the doctor when most people would. I wait and see if it passes because nine times out of ten it seems to be related to flares in my existing conditions rather than anything else. With this I’ve actually had no real noticeable symptoms, unless they’re muddled in with my usual stuff. The things I worry about most are the tests (more fear of the unknown, or of fainting than anything else) and also meeting new doctors and having to explain my health. I’ve experienced so many different attitudes towards my symptoms, diagnoses and the way I manage over the years that I am genuinely scared when I meet a new doctor. I half expect to be dismissed as imagining my symptoms, or them just being a result of deconditioning, told to push myself to do more and stop using the aids which make life liveable. Attitudes towards my diagnoses vary, from understanding to utter confusion, since so many doctors still haven’t heard of hEDS and POTS.

I try not to worry about specific symptoms that much, because if I did I’d end up in a right state. There are far too many to worry about, and then there are things I’ve not realised are symptoms until a doctor tells me that’s not actually normal (for one thing I never knew it wasn’t normal for knees to bend backwards because mine always had done!) But my experiences with the medical profession has left me unable not to worry when seeing new health professionals, granted I now have some great ones treating me but I can’t forget what has gone before and to be honest I’m not sure I ever will be able to.

For now though it’s a case of more tests and more appointments with new medical professionals, and all the anxiety that now comes with that, along with the wait for test results. But fingers crossed for positive news soon!