I’m pretty grumpy. I did my ACTH test yesterday, which involves coming off steroids for half a day before and I got a letter today saying that the test was void because the phlebotomist didn’t put the blood in the right coloured tube, so it went to the wrong place and can’t be analysed.
I’m a reasonable person and get that human error happens. But considering this illness can kill me pretty easily even when I’m taking my drugs, the fact that I have to come off them to do the test has the potential to make me seriously ill. This will be the third time I’ll be taking the test, and I also did the same test two more times a few years ago. These three times it’s been messed up because of hospital error, the two times before that the NHS didn’t want to do the test because they didn’t think the results would be ‘relevant’ (down to money). Except after a lot of debating, I saw a new endocrinologist who immediately said ‘why haven’t they done the ACTH test?’ and ordered it. So the NHS was trying to save money, but now I’ll have done the test five times? Go figure…
It also has a big knock on effect when tests get messed up and have to be repeated, which I don’t think HCPs recognise fully, as when we’re not physically in front of them, we’re just a number in the system. And when we are physically in front of them and have a melt down because there’s all of this going on in the background, I think they find it hard to empathise and think we’re being over dramatic. Mistakes happen, and that’s fine. But when taking the tests relies on a bunch of things, it has a chain reaction:
- I have to wait until I’m next healthy to do it. It took me 7 months to be well enough to able to do that test yesterday. I really hope it doesn’t take another 7 months…
- It has the potential to delay other appointments, like consultant ones. Thankfully I’ve got a bit of time before I next see my consultant, but it could quite easily have meant I would have to wait another 3-4 months.
- It delays other appointments in other departments. If you’re a complex case like I am, you get seen by many different people, with a lot of ‘wait until we get the results back from X before Y happens’. Trying to schedule all those appointments and tests in the right order is bloody hard work. And involves a lot of waiting.
- There’s absolutely no point in me going to my GP to help with my symptoms because she’ll just say ‘wait until you’ve seen your endo’ and I can’t see him until I’ve had the results of this test. In the meantime, I’ve been surviving on 3-4 hours sleep a night for about 4 years, have a weird heart rhythm, pins and needles and migraines which have all appeared since I last saw my endo, and I’ve no idea if they’re because of my existing illnesses or if I’ve got something new. But she can’t refer me to another consultant e.g cardiologist, because my weird heart rhythm could be because my ACTH is playing up.
That’s just the reactions within the NHS and my treatment. I’ve been doing tests and been in limbo for over 3 years now. With no end date. I read a blog post about cancer patients and how they feel ‘stuck’ while having treatment because people are either waiting for them to get better or to die. Which is kind of where I am- I’ve got this illness for life, but the impact on my life depends an awful lot on big tests, like the one yesterday. If my pituitary has a short circuit, there might be a treatment I’m currently not on. If my thyroid is broken, then, again, there might be something that will help. There might not be, and I might feel this shocking forever, but at least then I’d know and be able to make plans in the same way everyone does when circumstances limit them. At the moment I’ve just got lots of unanswered questions which pop into my brain when I’m low cortisol and can’t sleep:
- Am I going to be able to have any kind of job again?
- Will I be able to have a family?
- Will I be able to travel to places I want to visit?
- Can I drive again and get some of my independence back?
- Will I be able to move to a different place in the country? At the moment, all my treatment is based here, and if I move to a different county, I’d have to start from the beginning again and there’s not chance in hell I’m repeating 3-4 years of tests.
- If Brexit makes the NHS privatised how the hell am I going to afford treatment?
- How are we going to afford things like christmas and birthdays and trips to visit people?
And, also, hormone glands don’t just fail overnight (in this case anyway). So there’s always a small part of me that thinks ‘if I had made them listen sooner then maybe we could have prevented this from happening’. The longer I’m not on the right treatment, the more chance there is of other circuits in the endocrine system breaking.
It makes applying for financial support difficult when I keep having to say ‘I’ll know more once I complete the test’. I’ve already said many times about the last hospital error and how I had to fight for my thyroid to be checked- they’re not going to believe me when I say the hospital screwed up again, even though it is the truth.
None of this is very good for my mental health. The nature of this illness is that people tend to think because they haven’t heard of it, it isn’t as life threatening as I make out. After a few incidences where doctors nearly killed me and I survived by sheer fluke, it makes me not trust medics very easily. The hospital messing up the blood tests twice isn’t really helping with that paranoia. Now when I repeat the test again, I’ll not only be stressed about having to fast and withhold drugs and trying not to die, but I’ll also be anxious that they’ll mess it up again. Stopping my steroids is bad for my mental health too- it makes you paranoid, anxious, obsessive, depressed, and the feeling like that lasts for a couple of weeks after the test until your system rights itself fully. Then add in all the things I have to worry about which would make me feel like that anyway, I feel like a ticking time bomb. After 3 years, I’d quite like to have some of my life where I don’t feel like I;m just surviving day to day and I’m actually living.
Human error happens. It’s one of those things. It wasn’t the pathologist’s fault, who I spoke to today, so shouting at him wouldn’t have helped at all. So I didn’t, I thanked him for his apology and asked him to give me very detailed instructions to tell the phlebotomists so it can’t happen again. I’m not even annoyed at the phlebotomist, she probably thought she did it right. But the effort of having to not get upset about it, then having to ring and sort out the problem and trying to work out logistics the day after I stopped my steroids made me feel really terrible and run low on cortisol. But I don’t want to stress dose because then I can’t do the test again!! What I’d like HCPs to realise is that while they might think that any setbacks are pretty minor, when you add them all together and look at what a patient is dealing with as a big picture rather than individual brush strokes, there’s a lot individual HCPs could do better to support patients when things go wrong.