I have to say it's been a busy time since Part 13; I’ve transitioned from Leukaemia care to Pure Red Cell Aplasia (PRCA) treatment. I’ve completed my month on a heavy dose of steroids and I’m now running that down - I do have one little problem as you will see.
Steroids
The steroids did what they were supposed to do and stopped my immune system preventing red cell production. As I recall this was a test to see if it was worth moving me onto the Ciclosporin (there are various spelling s but this is what it says on the side of my box). In his letter to my doctor my consultant referred to my PRCA as idiopathic, which basically means it has arisen spontaneously and the cause is unknown.
A brief word about steroids - they certainly reach the parts other beers cannot reach. I'd perhaps recommend that you keep off social media while you're taking them. You feel as if you can answer every tweet, respond to every post and comment as your mind buzzes from topic to topic. As this drive often comes at the expense of sleep this can lead to 01:00 AM to 03:00 AM being taken up with social media - good for keeping up with Australia and New Zealand I suppose.
Then there's the additional appetite and inevitable moon face - I keep looking in the mirror and seeing a face looking back at me that is from a mix of French and Saunders and Little Britain.
Ciclosporin
After a month on steroids I had another consultation at the end of June and, to be honest things have picked up pace since then. The consultant confirmed that based on the results of my latest blood test he was encouraged and felt that the steroids had worked well to kick start reticulocyte activity such that my HB level was 95. Reticulocytes are slightly immature red blood cells. The plan now was to gradually reduce the steroids and then move on 2x100mg cyclosporine per day, one in the morning and one in the evening.
Nothing comes without risk and in my case the risk was the affect on renal function which, as I was already taking Exjade for the increased iron levels caused by so many blood transfusions, was more likely to be an issue. In order to execute the plan I would start on the cyclosporine immediately and test as part of my pre blood transfusion testing in the next week. The consultant was hopeful that I would not actually need the transfusion and added that it felt that a corner had been turned - but added let's hope it's not a false dawn just to spoil it!
So lots of logistics, getting in to see the consultant at his next clinic to pick up the prescription, getting into the GRH pharmacy to pick up the drugs, then tracking down the correct blood test form that correctly defined all the tests they wanted me to have, taking the drug at the correct time so that when I came to be tested it was just before my next dose and this was all at the same time as I was preparing for the Hartpury Festival of Dressage and getting the hay cut and in.
 |
75mg of Ciclosporin twice a day
©Harveywetdog |
Once I'd picked my drugs up I noticed that the correct spelling on the box was Ciclosporin so that's what I'll stick with. Ciclosporin is an immunosuppressant medication; basically it is stopping my body from destroying its own red cells. But if your immunosuppressing the already immunosuppressed you'll understand if I choose to keep my distance if I see you out and about at an event.
Other good news
My blood test results were such that I was allowed to stop my Filgrastim injections.
The consultant explained that it was his intention to wean me off Ciclosporin eventually - that was better than I had hoped because I'd assumed it was going to be for life.
In a letter to my GP the hospital explained that I had "responded well" to Venetoclax + Obinutuzumab such that there were only low levels of CLL detected on flow cytometry thus clarifying where I stood with respect to the original condition.
Crunch week
My transfusion was due to take place on the Thursday of the Hartpury Festival of Dressage so Wednesday saw me have my blood test in the morning and then head off to Hartpury for the Premier League PSGs in the afternoon. I was just trying to work out which arena was which when my phone rang - it was the nurse specialist with the initial results. My HB level was now 108 and the decision was that I would not be having a transfusion on Thursday. That felt like a major breakthrough. The not quite so good news was that my kidneys were beginning to take a bashing and had moved into an amber risk state and needed to be monitored. A follow up test was arranged for a week later and I was encouraged to drink more water.
All this was happening as I should have been videoing Alive and Kicking's Premier League PSG - but luckily she was withdrawn! Although this meant I only videoed class 1A and not 1B followed by 1A as I'd planned it was great to get the call and not have to go in for a transfusion the next day.
 |
Not the best place to receive a call
©Harveywetdog |
The next crunch week
We went through the same process the next week after another 6 days on 100mg Ciclosporin. My HB level had improved further to 112 but kidney condition was getting worse. Kidney function is inferred from the level of Creatinine in the blood. Normal range is less than 100, monitoring range is 100 to 499 and above 500 it is considered high. The nurse specialist explained that they tend to get "twitchy" at 300. I had been nice and stable for most of the time at 59 but it had been 109 last week and 124 this week - so there was a trend that needed to be addressed especially when people start talking about 52% kidney function. After consultation the plan was to miss my next two 100mg tablets and then pick up a 75mg dose which I was to start after the two missed slots. And you've guessed, more testing the next week.
Another good week
This was the week of the 2022 heatwave and Monday saw me in a very busy GRH phlebotomy bay in the Edward Jenner Unit for another round of tests. Consultation on the results took place on Tuesday and the specialist nurse was happy to tell me that my Creatinine level was back to 108 which was obviously good news. HB levels had risen again and was now 119. Apparently the consultant nearly fell off his chair when he saw this figure for me.
This should also have been a blood transfusion week but given the HB level the next two appointments have been cancelled. My therapeutic range for Ciclosporin was 100 to 200 and as it's currently 75 clearly we need to work that back up at the same time as we monitor my kidneys. I'm hoping that if the blood transfusions stop I can stop taking Exjade although I've found it's easier to start taking drugs than it is to stop.
Next week is a full consultation week so it should see another drop in steroid dose, maintained HB levels and a chance to ask the question about Exjade.
Apart from my busy medical month I've videoed at a couple of events and discussed the following topics on social media.
Cycle race
I was delighted to be able to video the Women's Tour Cycle Race as it passed through Newent and past Over Farm on their way into Gloucester.
.jpg) |
The race paces Over Farm Market in the wet
©Harveywetdog |
Cotswold Cup
Originally I'd planned to video at Waverton House but Wellington messing me about (see CLL blog 13) I videoed at Oxstalls as well. Good job I did because there was rain forecast for Waverton which when I saw the times for the class I wanted to video made me decide to give it a mess.
Hartpury Festival of Dressage
I've written a separate blog on this.
My Hartpury Dressage Blog
Festival of British Eventing (Gatcombe) media day
It was super to be considered for attendance at this gathering. Given the predicted heat on the day and the fact that I remain immunosuppressed I'd decided to give this is a miss a few days before. The start time was brought forward but by then I'd arranged my consultation for the latest blood test results.
I'm still looking forward to attending the main event however.
Hartpury Europeans and Brexit impacts
Hartpury host the Young Rider and Junior European Championships Dressage and Eventing Championships at the end of July and I'll be there concentrating on the Young Rider Eventing and, where I can, the Young Rider Dressage.
Looks like the journey home logistics could be a bit tricky with the availability of slots for horses seemingly at a premium on 31 July together with the increased logistics and costs attributed to Brexit.
There was a good discussion on the topic on the Harveywetdog Facebook Page and hopefully horses and riders will get back safely to Europe.
Boris Johnson
I know some people don't like the political blogs and posts, but I supported #backBoris and now he has decided to go it will be interesting to see what he decides to do next.
 |
Dilyn with Boris
Based on an idea by "Off The Leash" |
Camera
Given that I'm still no nearer being able to purchase my new camera due to Sony's global supply chain issues I've decided to go back to using the PXW-Z190. I was trying to keep the hours off it as I was hoping to use it for part exchange but decided it was going to waste sitting in a box under my desk, plus it helps me keep my hand in for the Z280 and the x25 zoom is invaluable for dressage.
Looking Ahead
There's no doubt the next month will be peak videoing activity for me with the two events at Hartpury plus the Festival of British Eventing so it's a good job my energy levels are on the rise. As I say I remain immunosuppressed so don't be surprised if I don't hug you if I see you out and about.
My medical priority is to make sure I maintain my HB improvement and kidney health and then carefully increase the Ciclosporin dose.
---------------------------------------------------------------------------------------------------------------------
Author - David Robinson
David spent approaching 50 years in Her Majesty's Electricity Supply Industry before retiring
He was part of the highly successful design team on the Sizewell B Nuclear Power Station Project before spending 25 years producing safety cases to keep our aging AGR fleet generating for the good of the nation
He is responsible for the Harveywetdog YouTube Channel which he maintains as an outlet for his creative talents
David is currently recovering from blood cancer but refuses to be a victim
All views are his own but might be influenced by the drugs he's currently having to take
.jpg)
Comments
Post a Comment