IVIG

Drink drink drink drink drink new blood. So we need to drink new blood. Blood!
Drink New Blood - Iggy Pop *

Cycle 13 begins (though I missed cycles 9, 10, and 11 due to indisposition)

My first month back on the sauce (cycle 12) has passed pretty uneventfully. I seem to have had far fewer side effects than I was experiencing prior to Christmas. I’m not counting my chickens, until we’ve had a few months as proof of concept (concept being: “maintenance treatment worth living on”), but I’m optimistic that this is the new way of being.

So far, as well, I’ve avoided the neutropenia that repeatedly interrupted things before. If that remains the case (again, let’s give it a month or two before getting too cocky), then it will make the process smoother, and also it means I’m going to be a little less immune compromised, which is quite a big deal in and of itself!

To that end, I’ve been approved for monthly immunoglobulin (IG) infusions (intravenous: IV so, all together that’s IVIG), which is basically regular top up with donated antibodies, beginning today. This won’t completely overcome my immune suppression, but it could help. I’ve waited months for confirmation of this because there aren’t enough donors for this, so you have to apply for access, and justify your need, I guess my recent drama proved mine.

 

I haven’t put this shout out for a while, but I’d like to encourage you to consider donating blood. Register here - assuming you pass the screening, they’ll tell you what to do. There are lots of locations for blood donation, including a lot of pop-ups in local community building and the like. You can donate as often as you can spare the time, up to three or four times a year.

Once you’re a blood donor, or if you already are one, and if you could reach one of the 25 specialist platelet donor centres, you could switch to donating platelets. Currently they’re seeking A+, A- and AB+ platelet donors. Really, they’d like platelet donors to be regular, donating every three months. You can register your interest here.

Or, if you live near one of the specialist plasma donor centres (there are currently three, in Twickenham, Birmingham and Reading), you could register here, for that. I guess proximity would be the key reason to go this route - if you live in the right place. Plasma is then separated into all sorts of specific products, including immunoglobulins. (Obviously, all those links are UK. Readers outside the UK, I’m sure the need is just as great where you are, and there’ll be a system, if you google for it.)

I’ve been dependent on all of these, at one stage or another. I needed pints of blood, to deal with anaemia, on and off all through last year. During 2019 there was a period where I needed platelets several times a week. And from now on I’ll be dependent on plasma donors, as the source of IVIG. So, donors are directly supporting people like me - and obviously all sorts of other diseases and trauma. If you can, maybe you should. (Don’t let queasiness or needle phobia be an excuse. Eleven years in I still look the other way every time they stick a needle in, which they did four times, on Wednesday alone during delivery of cycle 13.)

The rest of my story - my post ICU recovery - continues, in reasonable shape and at respectable speed. Nothing exciting to report. I’m getting there

_________________________

ADMIN - UPDATES BY EMAIL

Those of you who were receiving email updates will have noticed the service stopped working a while ago. I only realised more recently. I have set up a replacement, via Google Groups, which is now operational. Sorry for the delay in doing so. Joining the Google Group should enable you to receive future updates by email when I post them on the blog. I tried to send a joining invitation to those who were on the old service, but I can see many haven't verified, and the invites will have expired. If you want email updates, and aren't getting them, please click on the Google Groups link (top right of blog) to join the new service.

You can also simply subscribe by emailing dialmformyeloma+subscribe@googlegroups.com

and unsubscribe at any time by emailing dialmformyeloma+unsubscribe@googlegroups.com

_________________________

* My boys tell me pretty much any song worth listening to these days has parental advisory warnings on it. This one definitely proves that Iggy knew how to provoke warnings and general outrage, bridging the gap from the days of punk to the 21stC