* started writing this post on the 9th October 2020 and finished on 12th October 2020 *
* WARNING: people who know me, know I usually only write small posts. This is a LONG post. And I mean LONG. So grab a coffee (or whatever you drink), get comfy and enjoy the read *
My name is Zac and I am addicted to opioid pain medication. This is my story.
It all began back in 2018, around late January when I was admitted into Mona Vale Hospital on the Northern Beaches of Sydney. This was before the hospital closed for the opening of the new Northern Beaches District Hospital at Frenches Forrest.
At the time of my admission, I was homeless and had been for nearly 30 years and my health was out of control and suffering as a result. And being homeless made things even worse as you can not look after yourself too well sleeping rough on a concrete slab, in a park, in bushes, on a park bench etc.
So for this story, we need to go back before I was taken to the Emergency Department at Mona Vale Hospital by Ambulance. As a diabetic and unable to take insulin due to having no fridge to store it in, this medical illness can affect your feet, eyesight and much more. For me, at the time it was affecting my feet. I had diabetic ulcers on both of my feet. Started off really small and then just kept getting worse as it was being treated. Ended up with all this puss, blood and gooey stuff coming out of each wound and swelling my feet up to the point where I couldn’t even wear shoes. And I was in a lot of pain from it. I did have some Panadeine Forte, which I really shouldn’t take as it affects my stomach.
I shared some images of the wounds with a friend who also used to work as a nurse and she told me I needed to go to the hospital. Of course, me being reluctant due to previous issues in hospital for being homeless I didn’t go. After several days I just could put up with the pain anymore and I couldn’t even slowly walk to the other side of the building I was sleeping at to use the public toilet. Both my sweet were so swollen they looked like a pair of alien feet.
I had enough, I couldn’t put up with it anymore. I ended up calling 000 (Australia’s Emergency Number) and asking for an Ambulance. They arrived a short time later and had a look at my feet and were a bit shocked. They gave me the pain whistle and brought the stretcher around and put me on it and then it was off to the hospital I went. I didn’t want to go still, but I knew I had no choice. If I couldn’t even walk about 15 metres to go to the bathroom I was in serious trouble.
Hospital Admission – Phase 1:
After being taken into the Emergency Room by the Ambulance the nurse came and got all my details had me put into a room and not long after the Doctor came along and had a look at my feet and ordered a heap of blood tests, IV antibiotics and fluids, a morphine injection, some oral medication and the specialist surgical team to come and see me so we could work out a plan to sort the infections.
When the surgical team arrived around an hour later they took a good look and poked and prodded, which bloody hurt. They then said I need to be admitted to the surgical ward. So they made all the arrangements and had scheduled pain relief every 4 hours. This began the morphine and opioids at the start of my hospital stay. Which they expected to only last for a week or two maximum. However, this was not going to be the case.
After a week in the surgical ward, my medical team noticed an issue with my left big toe. It has turned purple and there was no feeling at all in the toe. They stuck a pin into the toe which I did not feel. Apparently, they put it in a decent length that anyone would have felt. I was transported to another facility to have a bone scan as Mona Vale didn’t have one at their small hospital. A few hours after the scans the results were back at the hospital and it turned out the infection had spread into the bone itself. So this was now the start of what was going to be an extended stay in hospital. And not something that I was going to enjoy. I didn’t like being restricted. I didn’t like not being able to move freely around when I wanted and to wherever I wanted.
My team gave the ok for me to come and go on the hospital grounds and to the beachside hilltop, which was right beside the hospital. As long as I wheeled my IV drugs and had my phone and returned to the ward to see my Doctor should they call whilst I was out. This is something I did most days, but under heavy medication as well. It was good not being cooped up in the actual bed.
They had constant issues with my cannulas as they kept blocking within 24 hours and they had to keep getting a specialist down with a tiny ultrasound machine to find my veins to insert a new one. After a short period, they decided to put a PICC line in which would make things easier. So they thought. After a week of no issues, it also blocked. So it was back into surgery to have another PICC line inserted into the arm. This time no issues. Thankfully.
Hospital Admission – Phase 2:
After being in the surgical ward for 2 weeks I was transferred to another unit in the hospital. It was the rehabilitation unit. They would move me back to the surgical ward if we were going to begin amputation of my foot at this stage. But, they wanted to continue the IV drugs and pain relief to see if they could sort the issue without having surgery. It allowed me to get the treatment I needed whilst having a bit more freedom as well as my hospital stay was going to be lengthy, they were saying maybe two to three months in total (they were right about that). And the good part, even though I was in another ward of the hospital the same medical team treated me within the rehabilitation unit. I had no contact with the rehab unit Doctors unless it was urgent and they were waiting on my team to arrive to take over. Which only ever occurred once when I collapsed and had an epileptic seizure. The only problem with the new unit was it was full of elderly people which didn’t work for me. I ended up in a room of my own which was good.
So the daily routine began with pain medication, breakfast, walk to the headland and have a few cigarettes and sit on a chair overlooking the hillside to the beach below, whilst catching up on Facebook and emails and also having a nice cup of coffee, all at the same time as wheeling my best buddy – the drip which had my IV drugs, my instant pain relief and fluids all running off it into the PICC line. After spending maybe an hour or two up there it would be back to the unit to get my fluids and IV changed and ready for lunch, unless I got called back earlier to see my team, which happened many times and at various times of the morning and afternoon, you just never knew when they would come around, but they always gave about 20 minutes notices so I could get back to the unit as they knew I would probably not be there.
The afternoons were pretty much the same. Or I would go and sit in the back of the unit outdoors at the table with my laptop, headphones, just doing anything I could find online and chilling and trying to relax as much as possible. The other thing I hated was dinner, it was so early. Always turned up before 5pm. Usually between 4.30 and 5pm. That is way too early. I hated eating that early, so I would get a sandwich added to my meal so I could have it later, being a diabetic I was allowed to do that as I had to have food and could go long periods without it.
Apart from the standard IV drugs, fluids and IV pain medication there was also a lot of oral medication I had to take and various needles. There was all the general medication they got me back onto since I was (for now) in a stable environment and also they had me on pain medication every 4 hours. They were Endone, OxyContin and Panadol to help with the other two. This began the use of the opioid drugs and it was an every 4-hour occurrence.
Above and Beyond:
My medical team went way above and beyond what they were being paid to do. Multiple times weekly there were on the phone or emailing or faxing off paperwork to get me into accommodation for when I am finally released from the hospital. They wouldn’t stop hounding people and just kept the pressure on. That is something they didn’t have to do in their duties as Doctors, they could have left it all the Social Work team, but they didn’t. They were hands-on and in the end, it worked.
They were working hard with several phone calls a week to the main place I wanted to go, which was on the Central Coast. It was a place that I knew and with decent support workers I knew and trusted (well, all except 1 of them anyway). After 3 months of constant hounding and waiting, all the while my Doctors worried I was going to self-discharge (which I nearly did many times) and being in the unit starting to affect my mental health worse we finally got news on a Monday morning that a placement had become available on the Central Coast and I could move in on Wednesday.
From there, things moved damn fast. The rehab unit team and my medical team began the process of discharge whilst getting a full months supply of all medication (which was a lot) and discussing with me things I would need to continue and at the same time linking me in with the Vascular Surgeon team at Gosford Hospital, who I knew well from previous issues with my feet in that hospital. I would need to keep my PICC line in for a couple of weeks after discharge and have a nurse come to my new home daily to change the antibodies which now ended up in me having to wear a bumbag which had the antibodies in it going through the PICC line. So I had the PICC line very visible when out in public or with people. And of course, everyone wanted to know what it was. When I showed them they couldn’t believe I was in public with a PICC line that went to just above my heart. But it was better than keeping me in hospital. Damn, I had already cost Medicare a fortune for my near 3-month stay in hospital and rehab alone.
On Wednesday morning I was fully packed and my medical team came for one final check over, to make sure this is what I wanted and to make sure all the discharge paperwork was done and completed. I thanked them for being so caring and supportive and putting up with me during some of my mental breakdowns during my stay, which they totally understood. I actually even got a hug from the inter-team, which was 5 people. They wished me luck in life and were happy that I was not going back to live on the streets, but that is only because of all the hard work they had put in and the change in mindset that I had, which was enough is enough I can’t live this way anymore. And so began a new and different lifestyle. I had got them a card and a box of chocolates each. Just a little thank you parting gift.
Now, as I was picking up my bags to go get onto a bus, a ferry and then another bus to get to Gosford to get picked up by the Coimba I found out other news which I had no idea about until that very moment. The inter 2 days I was working on bus and ferry schedules to try and get them all aligning up so I wouldn’t have long to wait at each location. But what I didn’t know, even though they knew I was doing this, they were also working on transport. I ended up being transported to Coimba in an Ambulance. From the Northern Beaches of Sydney to the Central Coast of New South Wales, which is a couple of hours drive away. They told me there was no way they were allowing me to catch public transport in my still fragile position and with an active PICC line still in full use. About 45 minutes later the Ambulance arrived (a little late) and off we went. I was comfortable and able to lay down and sleep during the trip due to my morphine shot just before I left the hospital.
Arriving on the Central Coast:
So I woke in the Ambulance just as we were arriving into Gosford, I don’t remember anything about the inter journey up. Which I didn’t mind. We pulled into Coimba’s driveway. which is steep and awkward. I got out of the back and fell down a small hill. The nurse got my stuff out of the back of the Ambulance, my backpack and a hospital bag full of paperwork and medication. And then when I was inside and with the workers, they got back into the Ambulance and left to head back to the Northern Beaches.
To start with I went out the back and had a smoke and a cold drink and relaxed for a little, had some medication and then I and one of the workers got the majority of the paperwork out of the way and completed. I was then driven down to the bedsits as I was being put into a bedsit unit and not in the actual refuge house with other people. This was good for me as it wouldn’t affect my anxiety living with other people I didn’t know nor trust. For me, that would have been a major issue to try and overcome and I probably would not have been able to do it.
The next day we began making appt.’s with a new local GP and getting linked into some other services that I needed. I was actually happy. Queen size bed so nice and comfortable, not something I was used to. If I am totally honest, even though I was in the bedsit I still gave myself 2 to 3 months and then I would leave and go back to living on the streets, back to my comfort zone, back to what I had known for 30 years. It was going to be a long road ahead that is something for sure.
My Addiction and My GPs (The first and my current):
Well, this is where things begin to get weird. I started by seeing a Doctor at a medical centre in West Gosford. I was seeing her for roughly 2 1/2 months. Upon being discharged from hospital I was on a massive dose of opioids many times throughout the day. I was on over 15 a day. I realized a problem was occurring. That problem was I was becoming addicted to this medication. So I made an appt. with my GP at the time and discussed this with her. And her reply was to increase the dose, get me a new government authority script and ignore my issues of addiction. I literally told her there was a problem that we needed to deal with and all she wanted was to increase it. So, as a result, this was the last time I ever saw this GP.
I spoke with my main caseworker in the program I am in and explained what happened and said we needed to find a new female GP urgently. He suggested a Doctor at the Jacaranda Family Medical Practice. I made an appt. with this Doctor and on the first visit explained what happened at the GP in West Gosford. She was disgusted. So, we came up with a plan and it was working great. But I was still in a lot of pain. We dropped from around 15 a day to 7 or 8 (depending on my daily need) and this is where we are at today. And it took a long time to get it reduced to this amount. We had to reduce it slowly due to major withdrawals and possible seizures and because of my epilepsy, we had to be very careful. And I have now been seeing her ever since, which is getting close to 3 years now.
The Problem Now:
So, a major problem now is that if I miss 2 (two) doses of my pain medication I go into withdrawal symptoms. I get the sweats, stomach cramps, have trouble breathing and get a tight chest, severe headache, the shakes (both throughout my body and in my hands) and have coughing fits on top of extremely severe pain. So I have to try so hard not to miss a couple of doses, I can usually get away with missing 1 without any major issues.
The other problem now is my new antidepressant, which is Zoloft 100mg, is making me sleep, something I don’t normally get much of. So this is making me miss doses when I sleep right through the night when I took the pill at night. So, I changed it to the morning and then I was sleeping all morning. So the new plan that was decided today (12th October) is I always have a nap in the afternoon. So I am literally going to take it about 30 minutes before I go for my nap and set an alarm for 3 hours later and hope this will solve the problem. This is something I should know within a few days.
General Comments on Opioid Addiction and Ending:
This is a horrible illness to have and something I would not wish upon my worst enemy. It is something I wish I never started. But as it started in hospital for the 3 months I was there the process had already begun. And right now we are going on 30 months later and I still have the addiction and the pain and the issues in my legs. But we have reduced the opioids by around half, so that is a big step. But due to other health issues going on, we can’t really reduce it any more right now and also it would cause some major issues with the severe pain that I am in every single day.
So, this ends my story. I apologize for it being so long, but I had to give you the full story, right from the start so you understood where it started right through to where I am today. I will also keep you posted through my regular posts as to how this reduction when we continue it again is going.
I also want to thank my friends for their support over this inter time. Even though we can never meet face to face as you are in the US, you have been a major support and got me through some difficult times in the past, but more so over the last 3 years. Words can not express how grateful I am to have you in my life and how grateful I am to call you my friends. And one of you, in particular, I classify as the brother I never had (you know who you are).