Navigating the Maze

This post follows on from an earlier post about a chain of medical appointments that followed the discovery of a cataract and retinal tear Link: A Superfluity of Appointments

By this point I had already had one laser procedure on my right eye and was waiting to hear about the cataract in my left. I assumed things would proceed in a fairly straightforward manner from there. I was wrong.

If I thought July had been busy, the months that followed quickly proved me mistaken. What had begun as a fairly routine visit to the optometrist gradually evolved into a seemingly endless series of hospital appointments, administrative misunderstandings and increasingly surreal logistical challenges.

The first of these was another appointment with the Eye Service on Level 2 of the Outpatients building at Christchurch Hospital. At this stage everyone seemed slightly uncertain about which eye the appointment actually related to. Since the letter said nothing about not being able to drive afterwards, I drove myself into town.

I went through the now familiar routine of waiting rooms, eye tests and machines that required me to stare intently at small crosses and dots while attempting not to blink. At one point I managed to lose both my glasses and my bearings, although I was spared the dreaded dilating drops because I had driven myself. To this day I am not entirely sure what that appointment achieved.

The retinal tear in my right eye — the one that had never caused me the slightest problem — began to attract a surprising amount of attention. What had initially been described as a “small” tear seemed to require repeated monitoring and eventually further laser treatment. Meanwhile the cataract in my left eye — the one actually affecting my vision — received rather less immediate attention.

Around the same time my MS symptoms began to flare. There was dizziness, fatigue, headaches and a sense of sensory overload that occasionally gave way to something resembling panic attacks. Stress has always amplified my MS symptoms, and there was no shortage of stress during this period. Between hospital appointments, Inland Revenue correspondence and ongoing negotiations with MSD, it sometimes felt as though every branch of the New Zealand bureaucracy had decided to converge on my life simultaneously.

One episode of dizziness resulted in an undignified fall. Fortunately I was at home and I wasn’t injured, but it did little for my confidence. Because of this and the worsening symptoms, I arranged an appointment with my neurologist — not always an easy task given the shortage of neurologists in New Zealand. An MRI was organised to check whether my MS had progressed.

While waiting for the results I received a particularly formidable letter from Inland Revenue with a list of forms and paperwork I needed to provide before the end of August. By this point my stress levels were becoming unsustainable and my GP prescribed some short-term anxiety medication and referred me for counselling.

When the MRI results finally came through, they were reassuring. There were no new lesions and the optic neuritis was not currently active. My MS was stable. It was both a relief and a surprise to learn that optic neuritis can flare and settle like this. I had assumed that, like most MS symptoms I had experienced, it would simply worsen over time. More importantly, it suggested that the deterioration in my left eye was far more likely to be caused by the cataract than by MS-related optic neuritis. For the first time in months, I felt a flicker of hope.

I also phoned my optometrist, who seemed to possess greater powers than either my doctor or my neurologist when it came to shaking up the Ophthalmology Department at the hospital. Yes, I was on the list for cataract surgery. I was given the following details:

When I asked about timing I was told it could be up to four months — which would place it conveniently in the middle of the Christmas and New Year holidays. Not ideal, but at least I was on the list.

September arrived and I was due for my Ocrelizumab infusion at Christchurch Hospital. I had heard that the Day Unit, where these infusions were performed, was moving premises so I phoned the hospital just before leaving Diamond Harbour to check where I was supposed to go. I was told that due to industrial action the infusion would not take place that day and would need to be done the following day.

I wondered what would have happened if I hadn’t phoned. Would I have driven all the way from Diamond Harbour to the hospital — an hour-long journey involving parking battles and hospital navigation — only to be told to go home and return the next day? To be on the safe side I phoned again the following morning in case it had been cancelled again. Fortunately my infusion went ahead as planned.

Around this time the MS Society were calling on people receiving Ocrelizumab infusions — currently about a thousand patients in New Zealand — to support their submission to Pharmac to fund a subcutaneous version of the drug. The new method would take around ten minutes to administer rather than the near full-day infusion currently required, freeing up nurses, space and time within the hospital system. I submitted my support. It seemed a win–win situation all round.

The following day I had my first trauma counselling session and, to be honest, I felt like I needed it.

At the beginning of October I was back at Outpatients once again, this time on the fourth floor seeing my neurologist. Despite the fact that my back hurt, my legs felt as though they had been attached to my hips by someone who hadn’t read the instructions properly, and I could hardly see out of one eye, he seemed delighted with the MRI results. There were no new lesions and no evidence of active optic neuritis. He explained that MS-related optic neuritis often clears within two or three months as inflammation subsides. In my case I simply hadn’t noticed the improvement because the cataract had probably begun affecting my vision at the same time.

I had another appointment at the Eye Clinic a couple of weeks later. Once again I drove myself into town. The letter did not say I wouldn’t be able to drive afterwards and I assumed that even if they wanted to use those appalling dilating drops, the appointments usually took so long that the effects would probably wear off before it was time to drive home.

After yet another extended Eye Clinic visit through the second-floor maze — during which I did receive the dilating drops — I underwent further laser treatment on the supposedly “minor” retinal tear. Then, without a trace of irony, I was told that my cataract surgery had been declined because the vision in my right eye was too good. If I hadn’t been so angry I might have laughed. What sort of health system decides eligibility for surgery based on the good eye rather than the bad one?

At the beginning of November I received two appointment letters: one for the Eye Clinic on 19 November to review the retinal tear, and another for a phone consultation with my neurologist on 2 December.

This time I arranged a lift from Diamond Harbour with a friend. I realised that I probably shouldn’t have driven home after the previous round of laser treatment and suspected that more drops — and possibly more laser work — might be involved.

I left Diamond Harbour at 9:30 a.m. for my 11:00 appointment. Evidently further laser treatment was required. By this point I had undergone three procedures on a retinal tear I would never have known existed had I not failed my driver’s licence eyesight test because of the cataract. Afterwards I could barely see. My friend dropped me home at around 4:00 p.m., by which point I felt dizzy, nauseous and unable to eat. Not that it mattered much because I had developed severe toothache, which did little to improve matters.

On 30 November, after writing to the Eye Service outlining the impact that the imbalance between my eyes was having on my daily functioning and MS symptoms, I received a phone call telling me that I had been placed back on the waiting list for cataract surgery.

A visit to the dentist on 2 December revealed that approximately three and a half thousand dollars’ worth of dental work needed doing. More angst and more negotiations with MSD — none of which I will go into here. I rushed home from the dentist in time for my scheduled phone consultation with the neurologist. Nothing happened. After waiting an hour I phoned the hospital and was told that someone had mistakenly entered the appointment as 2 December 2025 instead of 2026.

Around this time I also returned to my optometrist — the one who had initially described the retinal tear as “minor”. If it was minor, I wondered, why had it required three rounds of laser treatment? She explained that the equipment at the hospital Eye Clinic would be more sophisticated than what they had, and that the specialists may simply be seeing more detail. I briefly entertained the thought that perhaps they had recently acquired new machinery and were keen to test it thoroughly.

On 16 December I had another appointment at the Eye Clinic. Once again I drove myself, reluctant to ask my daughter — who has young children and a part-time job — or friends to give up most of a day during the pre-Christmas rush. They were unable to administer dilating drops because I had driven, but the appointment effectively became a pre-surgery consultation for the cataract. That felt like progress.

On Christmas Eve I received a letter scheduling yet another appointment for 6 January. I chose to ignore it. It appeared to be another review of the eye that had never caused symptoms, and I could not justify involving others in holiday-season transport logistics for something that seemed increasingly unnecessary.

The New Year brought further appointment letters — one for 17 February and another for 9 March. Assuming duplication, I phoned the Eye Clinic. The staff, as always, were helpful. The February appointment was for the retinal tear; the March appointment was a pre-surgery review for the cataract. I made notes on both letters, including two questions I had forgotten to ask: would I need someone to drive me, and hadn’t I already had a pre-surgery consultation in December?

The only actual appointment I had in January was with my dentist to get my painful tooth looked at. It thankfully turned out to be something minor … until it wasn’t. A week later it was as sore as ever, but I couldn’t get another appointment until 12 February.

February brought some unexpected “women’s problems”, which turned out to be caused by my HRT patch falling off. The symptoms disappeared soon afterwards, though not before my doctor organised an ultrasound. I still intended to go until the moment I phoned to confirm the appointment and was told to arrive with a full bladder. I explained that since I had MS and was somewhat incontinent this might not end well. I was advised to “do my best”. I cancelled the appointment.

On 12 February the dentist extracted the tooth next to the one they had filled the previous month. It was the first adult tooth I had ever lost (wisdom teeth excepted). I left the clinic dribbling slightly from the anaesthetic and feeling rather sore afterwards, but also oddly proud of my long-standing dental integrity.

On 17 February a state of emergency was declared in Banks Peninsula after relentless rain caused slips and fallen trees. The road out of Diamond Harbour was closed in three places, effectively cutting us off. Unfortunately this was also the day of my appointment at the Eye Clinic to review the third round of laser treatment.

When I phoned to cancel I was asked whether I was absolutely certain I could not attend. I explained that a state of emergency had been declared and residents were being advised not to travel. Given that I wasn’t supposed to drive anyway, attending would have required asking someone to disregard that advice and drive through slips and fallen trees in order to spend three hours reviewing a “minor” retinal tear. That did not seem reasonable to me. I was able to reschedule the appointment for the following week.

A week later my daughter drove me into town again. After the usual sequence of tests, eye drops and waiting rooms, a senior doctor reviewed my notes and confirmed that the retinal tear was stable and required no further treatment. I took the opportunity to ask about the appointment scheduled for 9 March — the one I had been told was a pre-surgery consultation that I believed I had already attended. He studied my notes with a furrowed brow.

“I can see why you’re confused,” he said. “Because so am I.”

He offered to cancel the March appointment unless I particularly wanted to meet the surgeon beforehand. By this point I didn’t especially mind who performed the surgery — within reason, of course — and left with a sense of relief that someone sensible had finally reviewed my case.

By then my daughter was starving and announced, “I think I need a drink.”

I had heard someone else say the same thing earlier in the waiting room — though I’m not entirely sure whether it was Waiting Room 3 or Waiting Room 5 — and I couldn’t help but agree. We went to a nearby pub, where we were unsurprised to see a vaguely familiar man in sunglasses enjoying a beer. We had a quick drink before leaving to catch the ferry back to Diamond Harbour.

Unfortunately we hadn’t accounted for the traffic. We arrived in Lyttelton just in time to see the Diamond Harbour ferry pulling away. The next one wasn’t due for another hour. We went to a nearby pub to pass the time. Bad mistake. The sun was shining, the harbour was beautiful, the drinks were good, and a jazz band arrived to entertain the growing crowd.

Eventually I did make the ferry — at 8:30 p.m. — only to realise that I had left the keys to both my house and my car in my daughter’s car. Thankfully a very kind person drove me from the Diamond Harbour jetty to a friend’s house, where a spare key was waiting.

The following morning, feeling slightly thirsty, I checked my emails. My heart sank when I saw an abundance of Health NZ appointments. Then it lifted again when I saw that one of them was confirmation of my cataract surgery on 10 March, along with two telephone consultations — one beforehand and another a month afterwards.

After everything that had happened over the previous months — the appointments, confusion, laser treatments and administrative merry-go-round — I finally had a date for my cataract surgery.

All that remained now was the surgery itself.

Next: Part Three — Surgery (At Last)