The 'NightGirl-- Immortality Delusion' continues unabated! On Thursday 31st January 2008, I left hospital, hopefully for the final time, after some major abdominal surgery. It has been the toughest 14 months of my life. And it all started so unremarkably...
It was a Thursday night, I remember, in late October 2006. I had been off work, after having some surgery, and was feeling that I was ready to return. I remember chatting to a friend online, and eating roast chicken! I had just finished eating, when I noticed a strange sensation in my left ribcage; the closest I can come to describing it, is like a stitch, but not quite... I imagined it was just the way I was seated, kind of slouched in the sofa, not sitting up straight as I should. I mentioned it to my friend, but didn't think any more about it, until after an hour or so, I noticed it had gotten progressively stronger, to the point that I was now unable to ignore it. I made my apologies to my friend, took some painkillers, and went to bed fully believing I would wake up the next day with no pain, nor even any memory of the pain. It was just "One of those things", those niggling aches and pains we all experience every now and then.
Friday came, and the pain was still there, stronger now. It felt as though someone had a blunt stick, which they were pressing into my back. Walking through the flat I felt a sick "bounce", as though something (my kidney?) was incredibly bruised and distended, and every step caused misery. This continued into Saturday, and again, intensified to the point where I was literally on my knees, on the living room floor, rolling around in agony, desperately trying to find a position which would relieve the pain!
I had (and have) never called 999 before, and was reluctant to this time. Sure, I was in a world of pain, but I never really thought I was about to die, which I thought was a pre-requisite of calling 999! So, I called NHS Direct. I first spoke to a nurse, who once I had described what I was going through, suggested it sounded like a Kidney Stone but, as I had just come out of hospital a little over a month before, she thought she should check in with a Doctor. In the meantime, I should take painkillers and await his call.
Around an hour later, he called. "Can you pass urine?" I could.. "Oh well.. I wouldn't worry about it then..." Gee, thanks! "Take some painkillers, and if it doesn't get better, come down to the 'Harmoni' clinic at your local hospital."
I pumped myself full of painkillers, and got through another night, but on the Sunday, the pain was so bad that I found myself crying because of pain, for the first time since I was a naughty child who fell over and scuffed her knee! As an adult, I had never experienced any kind of pain to force me to this kind of emotion before. I called my family to tell them I was going into hospital, as I couldn't take the pain any more. They suggested calling an ambulance to "get seen quicker" but my resolve was still strong. I walked (every step pure agony) to the local hospital, and got seen by a really nice Doctor. He wasn't too sure what to make of it, but a urinalisys did show I had a Urinary Tract Infection (U.T.I.), and he wrote out a prescription for some Anti-Biotics, and pointed me in the direction of the nearest, open-late-on-a-Sunday-night pharmacy. I walked (every step causing that sick "bounce" in my lower back) there, got my presciption filled, started to walk back but realised I just couldn't make it. I turned around and walked to the bus stop and, luckily, a bus came straight away. A man on the bus was looking at me and smiling, but I was just in too much pain to reciprocate; every tiny bump the bus went over caused me to whince in pain. I was trying to sit whilst supporting my body with my arms to create further "suspension". It was, thankfully, a short bus ride (hence my reluctance to use the bus) and I got off, bought some fluids and more painkillers, got home and collapsed on the floor, crying loudly as much through frustration and self-pity as the pain.
So, that was the first weekend! I went to see my GP during the week, and explained everything that was happening, and so the investigation process started out in earnest. Kidney stones were still the main suspects, and thus I was sent back to the local hospital for an Ultrasound scan, and then an Xray to try to find one. A week or so passed before I saw my GP to discuss the findings. They had found something that might be a small "calcification" in my Kidney, but it was basically inconclusive. My GP seemed to be losing confidence in me now, as though I were exaggerating, or out and out lying about the pain I was in. He suggested, somewhat dismissively and with humour, that the only thing they could do now was an "X-Ray UVI"; another Xray but this time with a "Contrasting" agent injected into me which would better highlight the internal organs, thus showing any stones, or other problems in my Kidney. I took him up on this "Offer" and credit to him, though he seemed to believe this was beyond the pale, he promptly filled out the forms to make the appointment for the IVU, and also another Ultrasound Scan. In the meantime, he advised, if I were to find myself in immense pain once again, I should go to A&E.
A couple of weeks passed. Much pain, huge amounts of discomfort. A couple of times the pain was just too much, and on one of these occasions I took my GPs suggestion and went to the local A&E. They were sympathetic, but when asked what my GP was doing, and having been told of the scans and UVIs that I was waiting for, agreed that this was the best course of action and that therefore there was really nothing they could do to help me, other than prescribe a stronger painkiller, Codeine.
Thankfully not long after this, I finally got dates for the scans; The Xray IVU was to be followed the very next day by a "full bladder ultrasound". Both procedures meant going to the hospital with a full bladder; having to drink a litre of water an hour before the procedures, and No Peeing allowed until afterwards! Ouch!
I laid out on the xray table, they injected the dye into my arm, and then we had to wait, as it made its way through my system, into the kidney it needed to highlight. After fifteen minutes they had a look with the Xray; the dye hadn't yet made it, though it should have. I was told to go away for half an hour, without peeing! After this, I came back, more xrays were taken, still no dye in my kidney. Frustrated, they sent me to the CT Scanner to see if anything was visible. After this I was finally allowed to empty my now-bursting bladder, and head home.
The next day, I was back for my Ultrasound scan but once there, they decided this would be superfluous given the ultra-hard-core CT scan I had been through the day before. Instead, they decided to perform yet more Xrays to see how the dye was doing. It should have been well out of my system by this time. The xray showed it was all still lodged in my left kidney. They also noticed something that no-one else had on the previous scans; the kidney was HUGE! Swollen, bloated, obviously not expelling any of the waste it is designed to do. So, this was the cause of all my pain! What was the cause of the swelling? A further look at the xray showed a "Constriction" of the Ureter, which is the tube that runs between the Kidney and the bladder. The Kidney's job is to filter waste out of the bloodstream. This waste is then mixed with fluid, and sent down the Ureter into the bladder where it becomes Urine. We then, obviously, rid our body of this waste through the Urethra and, hopefully (unless you are one of those people) into the toilet! My Ureter was blocked, like a hosepipe that is being trodden on. One end close to the bladder was narrowed and closed up. I was sent immediately to the Urology department, where I was quickly sent for some blood tests, and told to report back to the "clinic" the next morning.
I had already called my place of work to tell them I would be back to work that evening, so I called them to inform them of this new development; I was due to see the Urologist in his "clinic" in the morning, but I would still be back to work that night (I work permanent nightshift).
The next day, I got to the clinic to find that I was being prepped for surgery. Wha..?! No-one had mentioned anything about me being put under general anaesthetic before! I had to make a very embarassing call to work, to tell them that I would not be back to work after all. They were very understanding.
I was to undergo what is called a "Rigid Ureteroscopy", whereby a fibre-optic device is passed up through the Urethra, through the bladder, and all the way up to the kidney. Ouch! I am SO grateful that I was under general anaesthetic for That!
I woke up (or was woken up by a nurse) later that same day, and was allowed home. The surgeon came to see me before I left, but I was still so groggy and disorientated from the anaesthetic that I didn't really hear a word he said. But afterwards I discovered he couldn't get the device past the "stricture" in the Ureter, and that he felt it was something outside the Ureter pressing against it, causing it to close up, very similar to my previous analogy of someone standing on a hosepipe, blocking the flow of water! He inserted a "J J Stent", a tube with metal coils at both end, which runs between the Kidney and Bladder, to force it open and thus help with the flow out of the Kidney. He also said that I was to be transferred to Charing Cross hospital's Urology department for more investigation. I guess they are a more specialised department than my local hospital's. No matter!
I finally went back to work a week after this procedure, and thanks to constant painkillers, carried on as best I could. I never went out socially; I merely went to work whenever I could (and I took a lot of night's off work where the pain was just too much), and when off work, laid up and rested. One of the common results of having a JJ Stent inserted is many U.T.I.s and so anti-biotics were added to the cocktail of medication I was already taking.
I finally got a date for another "Rigid Ureteroscopy", this time my first at Charing Cross. So once again I was to be put under General Anaesthetic. I had been thinking that, previous to the first surgery in September 2006, I had never been put under general anaesthetic, and now it was happening almost monthly!
I was brought round after the procedure, and this time I was a little more aware when the surgeon came to see me. He disclosed that what he had seen with the endoscope, was a lump, a tumour, in the Ureter. The good news was, that he couldn't see a kidney stone!
To hear the word "Tumour" should be a scary moment I guess, but to be honest, I was just completely relieved! I had been in constant pain and discomfort for a few months now, with no explanation and a GP who was a little bit suspicious. At last, I could finally say what the problem was, what the cause of all the pain and discomfort was.
And so, the year rolled on. The pain and discomfort continued. The lack of a social life continued! Painkillers, work when I could, nights off work sick when it was too much. I underwent another 6 Ureteroscopies as they kept taking biopsies and reviewing how it was all going. Work were very understanding, thankfully, although there were a couple of times where they were, understandably, frustrated at my continued absence.
In one of my clinics with the surgeon, he discussed the probable surgery he would perform to solve the problem. Called a "Boari Flap repair", this involved cutting off the end of the Ureter that contained the tumour, rather than cutting out the tumour itself. Because the Ureter would now be shorter, a new hole would need to be cut into the bladder to accomodate the shorter Ureter, and the old hole sewn up. I asked if this could be done using keyhole surgery. "No", he replied with a smile. They would cut me down my middle, and open me up. I just hoped it wouldn't be too big a cut, or too bad a scar afterwards.
A further complication of all the kidney problems was my blood pressure. Because the Kidney wasn't functioning properly (although the kidney itself was still in good health; it just wasn't able to expel waste because of the blocked Ureter) my blood pressure raised. It had always been higher than it should be, but was merely monitored rather than medicated. However, as I went to hospital for yet another Ureteroscopy, my blood pressure was checked and was found to be dangerously high; 220/120 (a normal healthy BP reading is 120/80). I felt absolutely fine! But the anaesthetist was kind of freaking out, asking me if I had any tightness in my chest, any dizziness, any funny taste in my mouth? She was convinced I should be having a heart attack or a stroke, which was a bit scary! I was told I could either go to my GPs, or to A&E - she offered to walk me to A&E right there and then! I opted to go to my GPs. After all, it was likely I would just be prescribed even more drugs to control the BP, and my GP could probably get this done a lot quicker than an A&E department.
I went home, and went immediately to my GPs with a letter from the hospital "Fast-tracking" me in. And my GP... promptly sent me to A&E! Bah!
I spent most of the evening there, and they finally prescribed medication to bring the blood pressure under control.
Fast forward to September 2007. They are planning to remove the tumour in October, but decide to perform one more CT Scan. Unfortunately for me, this shows that the tumour has grown, and they now fear it is once again possibly cancerous. So, the surgery to remove the tumour is cancelled, in favour of yet another Ureteroscopy and biopsy to rule out cancer. Bah!
There then follows a huge silence. I hear nothing for a couple of months. Worried, I speak to another doctor who sends a letter on my behalf asking the Urology team to "get their act together!" Bless!
And finally, I get a date for the surgery: 23rd January 2008. I can expect to be in the hospital for "5-6 days", and can expect to be off work for "5-6 weeks". It's major surgery, and I am eager to get it over with, and get healed, and get on with my life. But I am nervous. It IS major surgery, and it's going to hurt...
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