Well it’s been a dramatic few months, from moving into my flat fully on ME Awareness Day, having my stent removed a week later, landing in A&E at the end of May, to finally having much needed major surgery at the beginning of June and more drama in between!
So it’s safe to say it’s been a while – the last time I blogged I was just about to move in to my flat, and now unbelievably I’ve been here four months, and to say things haven’t quite gone to plan would be an understatement.
The move itself went smoothly, but unsurprisingly I crashed 24 hours afterwards and one of my parents had to come to stay with me for a few nights. Four days on from that crash I had to have my ureteral stent removed ready for major surgery 3 weeks later. That went well, although within a week I was getting a lot of kidney pain, so much so I needed someone to stay with me again.
Fast forward a week to the end of May, and the pain was unbearable. I made it to my GP who gave me antibiotics in case it was an infection, and increased my pain meds. However that evening it became a lot worse and I was unable to eat or take the meds as the pain was so severe it was making me physically sick. My Mum rang NHS 111 while I lay on my bed struggling to stay conscious because the pain was so bad. They wanted to send an ambulance, however ambulance control said it was going to take 6 hours or more for an ambulance to arrive so it would be best if we could get me into the car and get me there ourselves. How my parents did that I do not know, I can remember screaming/groaning, feeling sick and dizzy with every slight movement as I got into my wheelchair, every bump in the path or road and when getting in/out the car! That felt like the longest journey ever.
Once at A&E I was triaged pretty quickly and given some much needed pain relief before waiting for blood tests, anti-nausea medication and to be assessed by a doctor. I had to have a CT scan before I was discharged at 2:30am with more antibiotics, anti-nausea tablets and very strong pain relief. They concluded I had a slight infection but ultimately it was just a case of my kidney failing to drain now the stent was out. So all they could do was try to manage my pain until my surgery date the following week and they’d rather do that at home than in hospital. Although I was made to promise I would keep that all important appointment the following week – to be at Theatre Admissions by 07:30am – to be honest it wasn’t much of a decision to make as it was the only way to get rid of this unimaginable pain!
The morning of June 8th was possibly the most nerve-wracking of my life. Waiting to go down to theatre on my own, with the words of the anaesthetist going round my head – “if your heart rate or blood pressure become too unstable and we’re unable to stabilise them we might have to abandon the surgery” – everything was a bit of an unknown as it was my first ever major surgery, and we didn’t know quite how my faulty autonomic nervous system would cope.
As it turns out it has surprised us all and coped a lot better both during and after the surgery than any of us expected. My surgeon found a “big fat artery” crossing my left ureter, virtually crushing it which is why my kidney wasn’t draining without the stent holding it open. He rerouted my ureter around the artery to resolve the issue.
The first words I remember saying when I came round are “Did it go ok?” – I had been so worried they might have to abandon the surgery after seeing the anaesthetist that morning, it was such a relief to hear them say it had gone to plan!
Now comes for the surprise bit – I stayed in recovery for quite a while as they couldn’t find me a bed on a ward until the evening, but not overnight like the team had expected because my blood pressure, heart rate etc were all stable.
I was moved to a ward in the evening, and my parents came to visit for a short time which was lovely. And I managed to get some sleep overnight as well – the pain from surgery was a lot less than it had been in the week leading up to it! Whether that was because it was better managed or just because the pain had been so severe prior to it I don’t know. The next morning my surgeon came to see me and his first words were “You’re looking well, I think as long as the catheter and drain come out okay, you can go home today”.
And everything did go okay. The only delay was waiting for my prescription of strong pain meds and blood thinning injections to arrive on the ward so I could be discharged. That was a painful wait as well because it was so long I was due more pain relief but the ward couldn’t give me anything because my medication card had been sent to pharmacy to fill the prescription! But it still wasn’t anything like the pain I was in before having the surgery.
So began my recovery at home. The first week was a bit of a rollercoaster, with little things causing big worries because we weren’t entirely sure what was normal and what wasn’t, and of course being discharged on a Friday evening there wasn’t a lot of support available over the weekend either! But we got through okay, and as I say my body has handled it all much better than we expected.
Fast forward to seven weeks post-op and I returned to hospital to have my stent out under local anaesthetic. That went smoothly – a lot more smoothly (and less painful) than the previous one! And so far, now 6 weeks on from that I am still doing well. My parents have been amazing, taking it in turns staying with me for the seven weeks while I recovered from surgery and wasn’t allowed to do a lot of things.
11 weeks post-op and we had another dramatic day, this time something just gave in my hip as I got up from my sofa on a Saturday night – the first night my parents had gone out to a party in a long time – I managed through the night but had to call on my Mum to help me out of bed the next morning because every move was agony. And once again I ended up in A&E in my pyjamas, only this time it was by ambulance! X-rays showed my hip joint itself was fine, so they suspected I had torn a muscle. I was discharged in the afternoon on pain relief and my parents once again took turns staying with me until I was able to get up out of bed on my own and didn’t need a walking frame to get around. Thankfully almost 3 weeks on and it’s a lot, lot better than it was although I am still sore even with pain relief and having to be very careful.
So all in all this year has definitely been a dramatic one so far – I can’t believe it’s September already! – in many ways things have been a lot easier than expected. But that’s not to say this hasn’t been hard on my body – it really has – however I’ve not felt anywhere near as rough as I expected to and for the most part my symptoms from my chronic illnesses haven’t been as bad as expected either. There have been tough days, and everything is very much a very careful balancing act of pacing right now. It doesn’t take a lot to push me from a “manageable day” to “overdoing it”, so it all has to be carefully planned. But I’m getting there, and that’s the main thing. Hopefully now things will settle down and I might be able to get back to blogging a bit more (this post has been in the making since the beginning of July so it might still be slow going!)