Earlier this week, I was hooked up to a ‘new’ machine, getting the first round of my four-monthly Rituximab infusions, for Scleroderma with associated Interstitial Lung Disease. However, to get to this point, has been a bit of a rigmaroll 😦
Initially we had to explain to the Rheumatologist, via email, that my treatment protocol had been changed, about a year ago, to four-monthly.
Then, to top things off, it took an extra week and a half to get the prescription to the chemist as it had been sent, via snail mail, to our house 🤔
Just when we thought that the appointments with the Medical Day Centre at Hutt City Hospital could get confirmed, I needed to reschedule my proposed appointment for a week later, as the medications were taking longer than anticipated and compared to how long they had previously taken to get here, due to the fact that there weren’t any in the country for the supplier.
A week later (Monday morning), I was on the verge of having to reschedule my appointment, yet again! As the Rituximab hadn’t arrived in Wellington. The chemist assured me though it was now in the country and that they should be here in time. If needed, he offered to deliver them to me personally on his day off to the hospital, now that’s service.
This all meant that I’d have to go to the Phlebotomists again, for the second time in a week, to get my blood sucked out, by one of there vampires, so that it could be sent away for testing 😆
Nah only joking, in reality, this was a breeze as the testing centre was empty, the phlebotomists were friendly as, and I was in and out of there real quick – all but another bruise and plaster to show for it.
Over the past few months or so, I’ve noticed that the bruising appears very quickly where they insert the needle and it takes a lot longer to heal.
So, I alternate which arm they take my bloods from each time I visit them.
In the past, this was something that didn’t tend to happen at all – maybe my skin is getting tired of being prodded and stabbed so often 🙂
Later that afternoon, I got a phone call from the chemist to pick the meds up, as they’d arrived in the mid-afternoon delivery.
So here I was scampering down Cuba Street, with walking stick in tow at 4:45pm, picking up my meds before they closed, en route to pick up Annette from the airport.
She’d been away in Invercargill for the 140th celebration of the Corps for the weekend, and she’d used the opportunity to catch up with Christina & Jonny and our grandson Jack, along with Patrick and Delana. Emily had also been down for the week, so all the kids were together for some much needed family time (excluding me 😕)
Anyhow, you’d think that after being at the Medical Day Centre so often in the past few years, I’d get used to seeing familiar faces and facilities.
But it would appear that they’ve not only had a few upgrades in equipment, they’ve also got a lot of new faces, there were only one or two faces that I knew from my last visit.
However, for the most part they were a much younger team and they provided excellent friendly service to me and the others that came and went throughout the day who were getting infusions for a variety of different ailments. I must say though, that some of the nurses, and even the doctors, looked a lot younger than my own children 😳 Am I really getting that old?
The procedure itself went reasonably well, yet again, which I’m forever thankful. To date, I’ve not had any adverse effects from the meds, and although it knocks me for a day or two afterward, (generally tired – but what’s new) 🙂 I do bounce back reasonably quickly feeling a tad better, and can breathe a bit easier, with my O² levels improving as well.
Settling into a comfy recliner chair, I finished writing a post entitled ‘Season of Creation‘ while I was infused with Rituximab and I listened to a progressive rock project, ‘United Progressive Fraternity‘ (UPF).
I’ve recently been introduced to this group through Spotify and have come to really enjoy their music and the environmental message that they are trying to get across, which is timely as we are in the ‘Season of Creation‘.
I ended up listening to both Planetary Overload Part 1: Loss, and Planetary Overload Part 2: Hope. Both albums by the UPF project fulfil a lifelong ambition and passion of Mark Truey Trueack (Unitopia); to bring people together under a common love of music and concern for humanitarian issues and the environment.
Why not check them out for yourself if you enjoy progressive rock music 🙂
Anyways, in another two weeks, I’ll go through the whole infusion process again to get the second course of Rituximab into my system. This time, it should be a lot smoother, as they’ll have the vials stored in the fridge ready to mix.
The things we go through to help prolong the deterioration of our lungs, or any other organs for that matter, beggars belief at times. Those with rare disorders, invisible disabilities, and autoimmune diseases know all too well the daily struggles and challenges that one has to go through – but go on, we must!
Sometimes it can feel a bit like deja vu going through the infusion process and also having to navigate a health system, which at times could make things a lot simpler for the ones having to access their services. Maybe that’ll happen in time – we’ve gotta hold out hope right!
Ironically, the third Interstitial Lung Disease (ILD) Day was celebrated in the US this week, and I’ll be writing an additional post about it in due course, which should be out in the next week. So keep an eye out for that.
You can also keep up to date with my health journey here. It has a series of other posts related to Scleroderma that you may be interested in reading.
Blessings ’til next time 🙂
The life and times of Perry... 