Monday, 31 August 2015

There Is a Light That Never Goes Out

Glad to see the back of August 2015, that's for bloody sure.

Tuesday 11th to Saturday 22nd was spent in hospital. Eleven nights in total. For the most part, the period is a blur, but through Facebook and Instagram posts, by both myself and Lee (keeping family and friends informed of my progress, when I wasn't able to), I have managed to piece together, in chronological order, more or less what happened.



On Tuesday 11th (the day after the public holiday), I went to see my GP at Northcliff NHC with pain in my upper right abdomen. He immediately suspected gallstones and referred me to a surgeon at Netcare Rosebank Hospital. A battery of blood tests, an ultrasound, and several X-rays later, the initial diagnosis of acute calculous cholecystitis was confirmed. It is a relatively common complication of gallstones (of which it appeared I had many), in my case necessitating a laparoscopic cholecystectomy, or removal of the whole pear-sized gallbladder and all its contents via keyhole surgery. I was immediately admitted, assured it was a "simple procedure", with a quick recovery time, and told I should be discharged on Friday.

The surgeon believed that the gallstones were caused by the continuous combined hormone replacement therapy (ccHRT) that I have been taking for the past four consecutive years (yes, I only just discovered that gallstones are one of the potential adverse effects of oral ccHRT), and he was concerned about me developing a blood clot post-surgery due to my increased risk for deep vein thrombosis (I also just discovered that DVT is another potential adverse effect of oral ccHRT). He told me to stop taking my hormone therapy with immediate effect, but to continue as usual with my SSRI and mood stabiliser for my bipolar disorder.

The following morning, 12th August (exactly one month shy of my four-year bilateral oophorectomy anniversary), I was taken downstairs in a wheelchair for an MRI scan. I was in that godawful coffin-like machine for about half an hour, and the entire time I had to keep my arms above my head. Pins and needles eventually turned into a dull, throbbing ache, and there was NOTHING I could do about it except pray for the whole thing to END. For some reason, I needed to go for a second MRI a short while later, as they couldn't go in and operate until they (apparently) knew the exact "length of a certain duct". (I was terrified they'd picked up something more sinister.) Thank goodness the second scan was quicker than the first. Then I had my first-ever enema. And that afternoon I went into theatre.

After surgery I was hooked up to supplemental oxygen via nasal cannula and moved straight to ICU, where they monitored me like a hawk for blood clots. My lower legs were in DVT sleeves which gently massaged my calves to enhance blood flow. The aircon wasn't working properly and I had to have a fan blowing full-blast on me constantly, as I battled terrible hot flashes as a result of the sudden withdrawal from hormone therapy.
Eventually I was moved back to the ward. The urinary catheter came out, but the biliary drainage catheter remained. A large haematoma had formed where my gallbladder used to be, which was causing me a lot of pain when inhaling, resulting in me breathing very shallowly, and the surgeon was concerned about my lungs collapsing, which could result in pneumonia. I was visited by a physiotherapist twice a day who got me up and walking, and gave me a spirometer to exercise my lungs regularly. I still needed a fan blowing full-blast on me constantly, as the hot flashes continued unabated.

The surgeon said I would need to stay one extra night. (Little did we know that that one night would end up turning into another eight nights, albeit seven of them in a different bed at a different hospital across town...)

Then out of the blue, my pain levels shot through the roof, radiating from the surgery site right up to my right shoulder. I was literally howling in agony. So much so that they moved me out of the ward into a private room, so as not to disturb the other patients, and I was pumped full of morphine and sleeping pills till the following morning. In my heavily medicated haze I vaguely remember the surgeon saying something about biliary colic and acute pancreatitis.


On Saturday I woke feeling like death. I hadn't eaten anything in three days. After the surgery, I had had absolutely zero appetite. The mere sight / smell of food made me want to vomit. When the morphine started wearing off, and the excruciating pain it had been masking returned, I think the surgeon realised he had a major problem on his hands. I was too out of it at that stage, and he told Lee that he suspected a gallstone had lodged in the bile duct, which can cause serious medical problems. A rapid decision was made to transfer me via ambulance to Life Flora Clinic for an emergency endoscopic retrograde cholangiopancreatography (ERCP) with another surgeon who specialised in this procedure.

The 15km journey was a complete nightmare. Although I was in a groggy morphine stupor, my already battered and bruised body felt literally every road surface irregularity from Rosebank to Floracliffe. It was a bumpy, potholed ride in a noisy van with no suspension and poor ventilation, set to the soundtrack of bad techno from the driver's cabin; an experience I hope NEVER to repeat.

The new surgeon assured me he had performed hundreds of ERCPs over the past 15 years, and on only two occasions had there been any complications. Well, Murphy's law, I turned out to be the third. I was told they could only do the surgery on Monday, but after a HUGE amount of begging and pleading to move it forward (I honestly didn't think I could survive another 24 hours in such agony), the surgeon rallied his troops, and I was booked in for the following afternoon.

I was told the op should take about 40 minutes, but afterwards Lee explained that the team had to stop halfway through as I started to bleed and the surgeon could no longer see what he was doing. Apparently I was the first patient he had seen bleed in 15 years. Thankfully, he had managed to open up the bile duct, to drain properly into my stomach, but when I heard that he would be giving me some medication to thicken my blood before going in AGAIN the following day to insert a stent, I started freaking out. The prospect of a THIRD op in SIX days was just too much for me. What had started off as a "simple procedure" with a three-night hospital stay, had turned into an ordeal I wouldn't wish upon my worst enemy. 

But when they did a CT scan the following morning, everything looked normal, and they decided not to operate again. I was sooo relieved! Not just because I didn't have to go into theatre, but because I could finally try to eat something, and put an end to the pounding headache I was sure had developed as a result of not being able / allowed to eat - for five consecutive days at this stage. When they brought me some jelly and custard, however, I could only stomach two spoonfuls before I started to retch.

On Tuesday 18th, my 41st birthday, I was woken at 4am by a lady from Lancet who needed to take blood. She was just one of MANY vampires who visited me at least once, sometimes twice a day for the duration of my hospital stay. Later that day I got my second enema. And a new physiotherapist arrived with a new spirometer, and made sure I got up and walking again.

I was scheduled to be discharged the day after my birthday, but my last blood report came back "abnormal", and I was put on another intravenous course of antibiotics. I was absolutely gutted I couldn't go home. I was desperate to get out of there and start the healing process in the comfort of my own home. The hospital was starting to do my head in. Much like prison, I would imagine.

Several hours later, shortly after midnight, I found myself wandering the corridors like a manic ghost. My hormones were by now completely out of whack, and the stress of the past several days had pushed me to the brink of a severe and very dangerous mixed episode. I was a hair's breadth from catching the lift downstairs, walking out of the building to the N1 highway nearby, stepping out of the darkness in front of a truck, and ending it all. I couldn't eat, I couldn't sleep (the sleeping pills they were giving me didn't touch sides), I had refused to take any more pain meds because they made me feel so nauseous and constipated, and at that moment in time, it just felt easier to end it all than fight another day.

If it wasn't for the thought of leaving a little four-year-old without a mother, I probably would've done it. Instead, I found a chair at the far end of the corridor, past the nurse's station, phoned Lee (thank God his phone was on), and begged him to bring me my anti-psychotic medication right away. I needed to silence the voices inside my head and knock myself out before I did something really stupid. Half an hour later, at around one in the morning, in walked my husband carrying my sleepy child. Within a few minutes of taking the tablets I started nodding off, and my boys (angels) disappeared as quickly as they had arrived.

The following morning I remembered very little of the night before. A hospital psychiatrist came to speak to me, and told me I needed to change my meds, but after taking whatever it was she prescribed, and suffering a raging headache straight afterwards, I decided to ditch her advice and continue with my own meds as normal.

By this stage I had pretty much lost all track of time. I didn't even know what day of the week it was anymore. Nine days, and counting, in a hospital bed - only able to lie / sleep in one uncomfortable position thanks to the afore-mentioned bile drain on my one side and IV site on the other - forced me into a zombie-like state, and I found myself just going through the motions.

The next two days dragged by, and I started losing all hope of ever being given the all-clear to go home. But on Saturday 22nd, the surgeon suddenly breezed in and announced that my discharge papers were ready and waiting to be signed. I was ecstatic! After the drip and the drain came out, I couldn't escape fast enough. Lee came to fetch me, and a couple of hours later, after a hot shower in my own bathroom and a long nap in my own bed, I started to feel half-human again. It was official: The REAL healing process had begun.


Tomorrow I go for a follow-up appointment with my first surgeon. I am still suffering from shortness of breath and can barely talk above a whisper. There is something not 100% right with my lungs. I also need to visit my gynae and my psychiatrist over the course of the next couple of months, to get my body back to functioning as a well-oiled machine in terms of the perfect balance between hormone therapy and psych meds. Otherwise, I am in a very good head space, and loving being back out in the REAL world. If I never see the inside of another hospital (or ambulance) as long as I live, it'll be too soon

PART 1 - Netcare Rosebank Hospital

Just a portion of the mulberry-shaped gallstones they found inside my gallbladder. The rest were sent for testing, or chucked away. How utterly vile!!

PART 2 - Life Flora Clinic

Above: The view from my room. That string of amber lights is the N1 highway.

Above: The disgusting bile drain in my stomach.

Below: One of the 'Dinner' options on the prescribed 'Light Diet' menu, I kid you not.