As my one year anniversary on SCIg approaches, I thought it would be appropriate for me to do a post about what life has been like these past 12 months, and how doing my own subcutaneous immunoglobulin infusions (which is what SCIg stands for) at home has impacted my life.
You may remember that prior to SCIg I was on regular IVIg, which I had in hospital once every four weeks, and was truly amazing and improved my life in so many ways. But you may also remember some of the pitfalls- having to spend one day every month in hospital, having nurses and doctors digging around for a decent vein, bruised arms, headaches afterwards unless I’d managed to drink the required 2 litres of water during the infusion, and of course the inevitable dip in my mobility and increase in symptoms in the last few days of each month before my next infusion was due.
Well…with SCIg, there is none of that! It’s been fantastic. I used to have 80g of Privigen every four weeks, so initially I was started on 80g of Hizentra (the subcut version of Privigen) across the month which I have been doing as two infusions a week (i.e. 10g twice a week over a month= 80g). However in December I had a massive increase in symptoms, and although it could have been coincidence (fostering-related stress, being run down and having a cold virus etc) I was really worried that I was relapsing. So my lovely neuro specialist nurse increased my dose to 12g twice a week, which I know doesn’t sound like much of an increase but that equals 96g of immunoglobulins across the month, which is an extra 16g on top of what I was getting before, and already just two months in to the new prescription I am seeing results from that- with an increase in energy and a reduction in nerve pain, tremors and jerks (all good things!)
There are downsides of course, like there are with everything. Instead of someone else jabbing a needle in my arm or hand once a month, I am stabbing four tiny needles into my belly with every infusion- so stabbing myself 32 times a month. But there are people on insulin and other medications jabbing needles into themselves every day, so I try to keep it in perspective. Also, being the one in control of when the needle hits, and having an abundance of flesh to choose from (haha…boohoo) is preferable to someone else rooting around in the crook of my elbow for a viable vein.
We’ve had to find ways to store my medication and all the associated STUFF that comes with it (and there’s quite a lot).
I get a delivery once every 12 weeks and it takes me maybe an hour to unpack and check that and put it all away, making sure to rotate the remaining stock so that I don’t end up with out of date human immunoglobulins stuffed at the back of a drawer. I had some issues in the summer with not being able to keep the room cool enough (Hizentra needs to be stored at room temperature) but a fridge thermometer and a fan have helped, along with moving the drawers that my medication is house in, into a shadier area (as in out of the sun, not further along the A6).
Some nights when I realise I need to do my infusion, which takes about two hours from start to finish, I just feel like I would rather do anything else on earth. That proper petulant child part of myself that I rarely allow to the surface comes stomping out, and I just want to fling myself on the sofa and say I CAN’T BE BOTHERED and possibly even whine WHY ME? But I always shake myself mentally and remind myself that back in the early days of my diagnosis, this is what I dreamed of. Seriously, to be almost symptom-free most days and doing my own treatment in my own home at a time that suits me (usually in the evening, watching TV in bed) that seemed like a FANTASY. Now it’s my reality, and it’s easy to slip into taking that for granted and seeing only the negatives (it stings, it’s time consuming, I would rather be doing x, y, z etc) rather than the positives (it works, it has almost no negative side effects and it’s goddam FREE on the NHS).
So overall- my first year on SCIg? It has been life-changing, and I say that without hyperbole (for a change). I feel so lucky. And no, I don’t always manage to hold that feeling, when one of my infusion sites blows and I have what is essentially a mix of thousands of other people’s sticky immunoglobulins seeping out of my belly and all over my clothes and/or bed sheets then yes I think “FML” because I’m only human. But the majority of the time, I feel incredibly blessed and grateful because I know how fortunate I am to have this treatment freely available and that it works so well. So well that there will probably even be people reading this who had no idea I even need it 😉
So here’s to a year of FREEDOM, and if not good health then at least well-managed illness, and may there be many more!*
(*Providing the tories don’t dismantle the NHS that is…but that is a separate blog post ENTIRELY)