It seems to be a universal law that as soon as you find yourself ‘comfortable’ with a situation, that situation will change.
When it comes to regular IVIG therapy, perhaps ‘comfortable’ is not the right choice of word but it’s fair to say that 4 months after being diagnosed with CIDP and 3 treatments in to my regular IVIG routine I felt like I had the situation all figured out in my head…
Chris requests the Monday and Tuesday off work.
I pack a little bag of stuffs to keep myself entertained.
I endure the horrors of rush hour traffic to arrive at Salford Royal for 9.30am.
I’m shown to a bed (which I never actually lie on).
I’m cannulated and I spend the day hooked up to an IV.
I have my arm bandaged up to protect my cannula.
I battle my way through rush hour again to get home in time for tea and to put the boys to bed.
And then it’s just a case of rinse and repeat the following day (but without needing to be cannulated obviously).
So of course when I turned up this morning, bright and breezy despite the pins and needles and tremors, with my bottle of water and library book…instead of being shown to “my bed” I was instead told to “take a seat in the waiting area”.
Well now, this is different, I thought, still smiling.
I was then told that there were no beds and I was one of several people waiting for one.
At this point, I must confess my smile was faltering as I tried to quell the rising panic. You see, something you may not know about me, is that I am a drug addict.
Yes indeedy. I’m all sweetness and light until I can’t get my ‘fix’ and then I’m all tears and tantrums (internal- I have yet to smash up an NHS waiting room. Frankly, by the time my IVIG is due, I don’t have the energy!)
Clearly I am physically dependent on the immunoglobulins. Not chemically, and I certainly don’t get withdrawal symptoms, but without it I’d be in a mess. In addition however, I have also become mentally dependent on it. The idea of life without it is so terrifying, that I can’t help but be. Knowing that my treatment is booked in and coming up is such a relief. It makes the final week of my month, when my symptoms increase and start interfering with my day-to-day life bearable, knowing that my boost, and ‘normality’ is just around the corner.
So there I was. Serene on the outside but on the verge of freaking out internally. I decided the best course of action was distraction, so I struck up a conversation with a fellow patient also waiting.
By coincidence, his story matched mine almost exactly…well…I say almost exactly. He had at least 25 years and about 100lbs on me, plus he’d had some heart surgery to boot. But his CIDP journey was very similar, initially having been diagnosed with GBS as I was.
We were still chatting when my name was called, only instead of being admitted to the ward I was shown to the Chair Bay.
You can probably guess what that is from it’s title. Yes, it’s a room full of chairs. I’d heard about this place but never seen it for myself.
Its actual title is “Infusion Bay” as it’s strictly for patients who are in for infusions (whereas the ward is a mixture of people needing infusions, biopsies, and a variety of neurological investigations) and it operates to a pretty tight schedule so in theory you sit down, get your IV infusion and then get out of there.
I am still a relative newbie to this whole business (not that I feel it, but today I sat next to a guy who has been coming here for treatment for over 3 years, so that gave me some perspective) and therefore my infusion rate has been pretty slow up to now, meaning I am not an ideal candidate for The Bay.
But since there was no bed for me I was MORE than happy to be a Chair Hog for a couple of days.
I was then visited by one of the neuro specialist nurses who was reviewing my treatment regime, and wanted to know why the hell (my words, not hers) my rate hadn’t increased beyond 150mls/hr when my maximum safe infusion rate is over twice that. The answer is partly due to individual nurses being over-cautious and partly due to staffing, as often a nurse will say “I’ll be back in half an hour to increase the rate” and I don’t see her until 2 hours later. It’s no biggie as far as I’m concerned. Regardless of how slow or fast it drips through I get the same amount and it has the same effect, so if I’m stuck in hospital all day for 2 days out of the month then so be it.
I must admit it would be nice to spend less time hooked up though and it was always my consultant’s plan that I eventually have the full 80g in one day. So when she suggested we give it a whirl today, since I’m in The Bay anyway, I thought “Why not?!”
So here I am. My second bottle of Privigen is currently being pumped into a vein in my right wrist at a rate of 200 mls/hr and I have 2 more lined up ready and waiting.
The side effects of an increased infusion rate can be high blood pressure, headaches and flu like symptoms, some of which can be combated by keeping well hydrated (hence me currently drinking water like it’s going out of fashion.)
It would be great if I could have the full 80g in one day but if I can’t, well then just knowing I will get it at all, is enough for the addict in me.
I did ask Santa to bring me one:
The larger, fluffier, all-black male is Loki.
The smaller Dutch female is Amora.