My Allograft 2018/19 – 11. 7th February 2019
By Andy Burrows, 7 February 2019
A day’s delay
Transplant day – the day I receive my donor’s stem cells – was scheduled for yesterday (Wednesday).
However, I was told on Tuesday evening that my donor had not produced enough cells in one day, and they would have to harvest some more the next day. I’d been warned beforehand that this could possibly happen, and it wasn’t anything to worry about. All they do is move the whole schedule back a day.
So, today – 7th Feb 2019 – is what is referred to as Day Zero. This is what everything gets measured from. Some people even refer to it as a “rebirthday” and celebrate an anniversary every year.
The last two days
It’s been fairly mundane here the last two days, since my last update.
More drug doses – I discovered that I have to have Cyclosporine (the one that gives me headaches) every day until I leave hospital. In fact, one of the criteria for discharge is that you’re able to move from IV to tablet form of that drug. And it’s the one they use for months to come to manage how quickly my new immune system takes over.
Because of headaches and feeling nauseous, I haven’t done as much Supercharged Finance work as I would have liked. But I have, as I’ve said before, deliberately not set targets for anything. So, it doesn’t matter.
I am now into the second of the Harry Potter books! And I’m sticking with the Grimm series on Netflix.
And I’ve done a fair amount of sleeping.
Apparently, my last “snot test” came back positive again. So, I’m still contending with this cold-that-doesn’t-feel-like-a-cold! I think they’re expecting the symptoms to come out any day now, so we shall see if they’re right!
So, I’m still in the small room, but I’m getting used to it. One day at a time. No point being disappointed over something I can’t control.
The other unfortunate thing, which I haven’t mentioned before, is that Heidi and the kids haven’t been able to visit.
That’s not anything to do with my cold-that-doesn’t-feel-like-a-cold. It’s because one of the kids came down with a cold (a real one) last Thursday night. And they don’t allow visitors if they’ve been in close contact with people who have had an infection or virus. So, Heidi has to wait until the cold symptoms have left the house before she’s able to come and see me again.
Hopefully, that’s soon.
Today started early – 5:30am. That’s when they had to start my Cyclosporine infusion. That’s because it had to be finished before the stem cell transplant, which was scheduled for some time close to 10am.
In actual fact it ended up being about 10:45am. And it took a good three hours or so to infuse, through my Hickman line.
There’s nothing particularly special about the stem cell infusion. The fluid is a pale red colour, but apart from the difference in colour it looks just like a blood transfusion.
And it doesn’t feel any different to anything else. There’s no sickness or headaches to contend with. Obviously, they take care while the infusion is going on. It’s the critical piece of the treatment and the contents of the bags are not easily replaceable. Blood pressure, temperature, pulse rate, every 30 minutes, and the nurse sitting with me, continually monitoring for the first two hours.
I still can’t feel the importance of this step. It feels just like any other day in this place. ‘Obs’, doctors, infusions, feeling tired, sick, etc…
And the subject of sickness has been under discussion. I was having three different anti-sickness pills, but I was still telling them I felt sick. At least, I was telling them more after one of the nurses urged me not to “suffer in silence”. I’d been sitting in my room, mulling over whether I really felt sick or not, and whether it was bad enough to call the nurses.
Yesterday, they tried the IV form, instead of tablets. And then, because that didn’t clear it, they gave me a tiny little pill… and that made me drowsy and I fell asleep for most of the afternoon!
This evening they’ve given me a pump, which is constantly connected to my line. That injects an anti-sickness drug continuously, which should theoretically mean that I don’t have sudden bouts of sickness when the pills wear off. And if need be, they can load it up with painkillers as well.
It’ll be fun trying to work out how to shower while connected, and trying to remember I’m attached during the night or every time I stand up!!
And I’m going to leave it there for today. I’m feeling pretty tired, and my brain isn’t at its sharpest. But I do want to post something on this most significant (if unexciting) day!
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What is a stem cell transplant?
If you want to get more insight into what a stem cell transplant is and how it works, the Anthony Nolan Trust has some really good information in its website. You can find that here: https://www.anthonynolan.org/patients-and-families/understanding-stem-cell-transplants
My 2015 transplant was an autologous stem cell transplant (a.k.a. an autograft). In 2019 I’m having an allogeneic VUD (voluntary unrelated donor) stem cell transplant (a.k.a. an allograft).
Becoming a stem cell donor
By the way, if you want to find out more about being a stem cell donor, here are a few links (UK-based mainly):
(Stem cell and bone marrow donors are amazingly kind people who offer to sacrifice their time and endure some mild discomfort to help save the lives of people like me who have a type of blood cancer – lymphoma or leukaemia.)