Here I go yet again 🙂
Yesterday morning while I was relaxing in a La-Z-boy at Hutt Hospital’s Medical Day Centre, I was hooked up for another dose of Rituximab for my health condition (Scleroderma & Interstitial Lung Disease).
Again it was pretty much smooth sailing for the most part, although the first attempt that the nurse took to get the line in the inside of the elbow of my right arm didn’t go so well.
I was recounting an experience I had in Wellington Hospital a year or so ago when suffering from a bout of Covid. Explaining that I’d fainted from the nurse trying to dig for the vein in my arm.
When all of a sudden I started to get a bit sweaty, and as the nurse put the infusion needle into my arm it did not engage properly. She tried a couple of times to get the blood to flow back but to no avail.
So she ended up having to put it in the back of my left hand instead as the vein was standing out well there – thankfully I didn’t pass out this time 😆
The rheumatologist in attendance at the hospital mentioned something about one of the kidney and liver markers from my blood test, which I’d had on Friday morning, being a bit of a concern as it was slightly higher than my ‘normal’. But it could quite possibly be due to being slightly dehydrated and they were not elevated enough to prevent me from having the infusion.
After being advised to start drinking more water throughout the day and into the coming weeks to help flush out any toxins from the liver and promote the natural cleansing process – we were good to go. And within a few hours I was done and discharged with no further worries.
Unfortunately, in the month prior to my infusions I’ve been experiencing a few extra bouts of fatigue and breathlessness than what my ‘normal’ has been in the past.
This tends to happen as the benefits of the medications wear off over time. However, this time round I’ve had them in the weeks between too.
I’ve had days where I have felt more worn out more than normal, and not really feeling the benefits of the medications that have been pumped into my system than what I’ve experienced previously. This may be because of the changeable weather that we have been having of late, fluctuating between extremely cold and windy weather and beautiful clear warmer days.
Or it may even be due to the fact that the body is hanging out for the medications more than it has in the past due to further progression of symptoms that I haven’t been acutely aware of – Definitely something to keep an eye on more closely I think going forward️☹️
On Friday, as well as having my bloods done, I had a follow-up respiratory appointment which went well. Annette and I inquired about a study that was being done down in Otago for Scleroderma with underlying Interstitial Lung Disease patients. This has been spoken about at the Scleroderma New Zealand Conference held in Invercargill earlier this year. From his perspective though it wouldn’t necessarily help my situation at all, which is a bit of a shame.
He seems to be reasonably happy with where things are at at the mo, and in the next month I’ll be having another Lung Function Test and CT Scan to see how things are progressing, or not as the case may be.
This is more exploratory to some degree, mainly due to the fact that I’ve had Covid a few times since the last tests were done, which were just over a year ago.
It’d be interesting to see if Covid has had any effect on my lungs, or if the medications have helped in preventing any further fibrosis scarring.
Obviously we won’t necessarily be able to tell either way, but it may helpful in assessing how things are going and provide further confirmation of the way forward.
Also it may help in putting one’s mind at rest to a small degree on the course of action we have been on 🙂
Talking about Covid, it doesn’t necessarily get a lot of air time of late, but just over two weeks ago I posted about a ‘Significant’ COVID wave that was likely to hit our shores this winter driven by the FLiRT subvariant.
Well, in the past week ‘reported’ numbers have dropped off slightly from the previous week, but remain over 5,000 per week. They also remain higher than what they were 18 months ago, which means for those of us that are immunocompromised we need to stay vigilant and careful when out and about.
I’m aware of a number of schools that have had to close due to the infection rates of students and or teachers, and many colleagues have been off sick from work due to increasing levels of illness. Some of which may well be attributed to Covid, but the testing is quite sporadic these days 😦
Rates of Respiratory Syncytial Virus (RSV), a virus that infects the lungs and breathing passages and cold and flu cases are steadily increasing as well. Unfortunately, our grandson Jack down in Invercargill managed to contract RSV recently and my mum and dad in Oxford have also just gotten over a pretty severe case of the flu 😦
![](https://braypa.wordpress.com/wp-content/uploads/2022/07/keep-safe-and-stay-healthy.jpg?w=300)
So, to help protect those within the rare disease and disorder community and those who have invisible disabilities, we can use basic health measures;
Ensuring that your vaccinations are up to date, using high-quality masks when around others indoors, socially distancing when out and about, testing and staying home if you are sick.
These four things are reasonably simple to do to ensure others feel safe and remain healthy
After all… Everyone’s life matters – doesn’t it?
The thing is, you don’t know who you’ll interact with this winter that could potentially get really sick if you don’t do your bit to help protect them. As they may not be able to fully protect themselves.
Others just like me, need your help so that we can reduce the chances of infection, or reinfection and get seriously ill. Will you do your bit?
Blessings ’til next time 🙂
Wow, I am sorry that you are getting put through the wringer with your ILD and the infusions. I once was a fainter when my blood was drawn, and I discovered that if I had a sugary drink on hand to chug while my blood was being drawn I would be okay. All you need is a couple of good experiences to get you over the hump, hopefully. I’m okay now, no matter how much trouble they have getting the stick. I had an infusion last month and my veins are so stiff they kept causing the infusion pump to alarm. Nothing but fun, huh.
I am still wearing my mask while out in public in most situations. I caught a virus last October that put me into a flare that lasted about 5 months. Ironically, it was a new Covid booster that caused me to pop out of the flare. I started iron supplements at about that time too, so maybe that also was a factor. I’m a little shocked to hear that the Covid numbers are so high in your area. As a fellow SSc-ILD patient, I’d like to urge you to stop catching Covid! Stay safe, and I hope that this latest infusion helps your breathing.
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I’ve had plenty of good experiences over the past few years, as I’m currently needing to go and have the infusions done on a 4 monthly basis. So, all in all one bad experience every now and again is to be expected I suppose. Once the line was in, it was all plain sailing 👍🏻
I certainly don’t plan on catching Covid at all and will remain cautious and vigilant as I get out and about for sure 🙂
Hope you’ve been getting plenty of time out in the garden and enjoying the fruits of your endeavors.
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Mostly I’ve been knitting Emotional Support Chickens lately. It seems there is a big need for emotional support in my scleroderma group. 🙂
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Must be the making of a new post in the coming days 🙂
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