It’s 6:20 on my third day in the hospital. It’s very quiet at the moment, with the occasional door going and the soft cooing of pigeons just audible outside. I’ve had my first attempt at taking blood today to test, but it was a failure, so another one in a bit.
Above is my room for the stay. Luckily the Ipswich team coopted a private hospital so it’s pretty swank, and surrounded by woodland, hence the pigeon. They have to move next week but for now my stay has been a four star on trip advisor. I did ask for a double… But hey, the food is good and served on china. (Photos at bottom). Also it’s definitely better than my first year at uni halls room.
For those of you just tuning in, this trip is to finally start treatment with Rituximab for my condition. I’ve had a bit of a torrid month before now whilst I’ve had nine bags of transfusion, and a fair few tests, to get into shape for the treatment and to make sure I could have my covid jabs, which I did.
I also know a lot of you reading are due for treatment at some point. I want to show you the good and the bad, but really it’s been ok so far, so don’t worry. Just a lot of being needled, which you get used to.
I came in Sunday night and had a blood test carried out, which showed 5.3 haemoglobin and 55 platelets (they should be about 12-15 and 150 plus respectively). I felt ok though so we decided not to transfuse again. The problem at the moment is blood volume, so that first night I had three attempts to put a canulla in (this stay is the stay of many needles). We were toying with putting it into my foot but luckily found an arm vein on the last try.
Once in I had a bag of saline for ten hours and also drank lots of liquids in preparation. (A kind of weeing every hour deal)
I also started a drug called Allepurenol on Saturday. All these things are to hydrate me enough so that when my white cells break down during Rituximab, they won’t overwhelm my kidneys with uric acid, which is one of the dangers.
There were plenty more jabs on Monday. With a better placed canulla put in once my veins had been pumped up with saline. Also another blood test.
Then I chilled for a few hours and we started on rituximab in the afternoon. Yesterday was a small test and it went well. First I had piriton the antihistamine on drip. That made me very sleepy and dopey, and then steroids which had no effect I could tell. Finally I had a anti clot jab to the stomach, which I was just allowed with my platelet level.
They then very slowly gave it to me and there were no real side effects for day one. Expected ones were fever, heart palpitations, pain, crashing blood pressure and the like. It was also the slow day where we tested it.
If anyone from work is reading I did my security training whilst sleepy on piriton. I got 90% but if you do less well… Well… Maybe taking drugs helped (caveat never take drugs and do mandatory work training… This is a joke).
Today (Tuesday) will be harder. We start low and keep increasing the hourly volume to see what I can take. This will take roughly six hours. If this all goes well I can have my next three weeks of it in the day room, which is the hope.
The team has been great, and even though I am a really difficult person to take blood from, have persevered a lot.
So for this of you interested I have had 12 various needles and canullas in so far, with a few more due. The first treatment went well. The next is most of today. If that goes well I will be able to be in the day unit for the next three. That is in terms of side effects, no idea on actual results yet.
Also we decided to hold off transfusing again. I went for a mile walk late last week with a hb of 5.3 and that was fine. So at the moment we will just keep track of me and not the numbers as you should be transfused to 7 before they let you leave hospital. Which would be like 10 bags for me.
Finally I will now be immunocompromised for the next 12-18 months and so will have to limit mixing and take care with colds and the like. Stats suggest if I get covid after rituximab I have a 35% chance of dying (an American health finding). This is caveated by the vaccines, which will have unknown effect and my age, which is a lot lower than the average.
So all in all going ok. I feel like a pincushion but it’s needed so grinning and bearing it. Everyone here is lovely. The NHS is brilliant and I can’t wait for this to be done and to get home, as no bed is like your own. :).
I’ll be writing a blog soon about how to treat a loved one or driend who has just been diagnosed or is ready for treatment. I’ve got a ton of good feedback from my SMZl group on facebook, so it’s not just me. I’ll try and get it out once this is all done. 🙂
Oh and the food is really good!!