Here I am, back at LGI. The big change is the lack of notes. Everything is being done with electromagiggery devices and brief notes on clipboards.
I am sitting getting my breath back after being made to blow into the infernal machine. This used to be a device which spat out a graph on a sheet of paper, but is now a tube connected to the electronic gadget into which every other statistic (pulse, height weight etc) was entered, but the principle of is the same. You blow really hard into the tube, whilst the nurse encourages you to, “Keep blowing, keep blowing, keep blowing..”, well past the point at which you think you are going to die. You then breathe in and immediately almost pass out. Indeed if you aren’t quite dizzy and choking, then you haven’t done it right. Having nearly killed yourself turning your lungs inside out, your reward is to do it all again. And again. Even after typing all this crap, whilst chatting to my kind volunteer “Passepartout of the day” I am still in something of a state.
The NHS website[1] speaks as follows:
Spirometry is a straightforward test and is generally considered very safe. Some people may feel dizzy, faint, shaky, sick or tired for a short period afterwards.
This is a lie. Most people will feel all of those and for quite a while afterwards.
Today I saw a new Doctor, I forget what his name was, I think there was a Salman involved, but I couldn’t say if it was his forename or surname and I keep thinking Rushdie, which had nothing to do with it at all. He was Dr Paul’s registrar and I’ll make a deal that if I ever see him again I’ll bother to remember and use his name in any missive I may write, but for now, he’s “the registrar”.
So, today I saw the registrar. Usually, I’m not keen on seeing the registrar, as they don’t know shit about my problems, being as they are training to be pulmonary specialists and deal with asthma and copd, whilst I have multisystem sarcoidosis. So usually I insist on seeing either of the two consultants. On this occasion though, caught by a random whim I decided to take a punt and actually he was pretty decent. We discussed the various changes since last time I was there and I was (as happens) able to demonstrate the wonderful technology that enables me to look up my recent blood tests, whilst the actual doctor cannot.
One of my ongoing problems is fatigue, so this time the registrar thought I might do well to have a vitamin D test. I am wary of such tests, as they tend to lead to prescriptions of vitamin D tablets and in sarcoid patients this is often a Bad Idea™ as it can cause hypercalcemia[2]. In fact there are two tests for vitamin D. The standard test is for 25-hydroxy vit D, which in most people is a good indicator. This is activated in the body into 1,25-dihidroxy vit D, which can be metabolised for the stuff you need vit-D for. Sarcoid granuloma can also activate vitamin D, however, so a low count for 25D might simply mean it’s all been converted into 1,25D by the sarcoid, thus both a 25D and 1,25D test are indicated. The trouble is that a 1,25D test is not a normal blood test, requiring the blood be kept cold and rushed to the lab and well, it’s not hard but it’s not standard either. Most GP surgeries couldn’t do it, as they couldn’t get it to the lab quickly enough, assuming the lab even offered the test, which many don’t.
Anyway, to my surprise and pleasure, the registrar described my wariness of a standalone 25D test without an accompanying 1,25D as a valid concern, meaning he is (at least as) knowledgeable (as me). So, the plan is to do the 25D anyway, along with a calcium test and if they come up normal call it good and if they don’t, then work out how to order a 1,25D test because the computer said no. Meantime, if they do come up low, we’re not telling my GP, so he doesn’t freak out and start prescribing calcium pills, which is the usual (and incorrect, for sarc patients) solution. Whilst we were doing bloods I got him to do an HBA1C as my last one was a little high and I want to monitor it. He seemed to be of the opinion that blood sugars wasn’t really their thing to deal with, but I noted that I wanted to monitor it and I was in a hospital, so would he please request the test. On that basis, he was quite happy to do so.
We also agreed to do a sleep study, Not done one in a few years, I had mild sleep apnoea then but it might have got worse and need more active treatment.
Barring anything out of the ordinary happening, back in four months.
[1] https://www.nhs.uk/conditions/spirometry/
[2] Calcium and vitamin D in sarcoidosis: is supplementation safe?
Kamphuis LS, Bonte-Mineur F, van Laar JA, van Hagen PM, van Daele PL.