Rare disease day

28 February is Rare Disease Day so it’s probably a good day for another update on my Cushing’s. It’s important to highlight rare diseases; yes they affect less people than the big, famous diseases such as cancer but they can be just as debilitating and life threatening, possibly more so because they don’t get the funding and research that others do.

It’s been a whole month again and there is actually a lot yet also not a lot to update on. As far as the blood pressure side of things goes it seems the two combined medications are finally having an effect. It has dropped, still not quite to acceptable levels but it is moving in the right direction which is the main thing. Along with that I just had another catch up with my GP this week and am signed off for another four weeks until 25th March as it has massively helped me both mentally and physically. I still have my very bad physical days but I feel like I can actually get through them now as I’m not having the mental stresses of work. I’m also suffering less from irritability, feeling overwhelmed and getting less headaches. As an added bonus Niall doesn’t get hours of me moaning at him after work about all the idiotic things I’ve had to deal with!

Dr Ayuk lived up to his word and my appointments were through very quickly for some follow up tests. I had my bone density scan on 8th February, my echocardiogram on 9th February and then a CRH test on 18th February. The bone density and echocardiogram are all very easy and quick tests.

The CRH test is not quite so much fun though not as bad as the IPSS sounds like it would be. It’s a similar principle but without all the nasty catheters snaking through your body. It took three hours and consisted of lots of blood being taken. You have to go in and have a cannula put in your arm then a couple of baseline blood samples are taken, one about fifteen minutes before CRH is injected and one about one minute beforehand. Two lots are taken each time as they are checking both cortisol and ACTH levels. Corticotrophin releasing hormone (CRH) is then injected and more blood samples are taken over the next two hours at longer and longer intervals. I think they started out at one minute after it was injected, then five, then ten, then fifteen and then up to half an hour. I ended up with over twenty vials of blood taken and as you have to fast beforehand as well I was feeling quite drained to say the least. They did feed me before letting me go though so that’s ok!

The idea of the CRH test is that depending on the percent your ACTH and cortisol rise at specific times indicates whether there is a pituitary tumour or not. The results are discussed at an MDT (multidisciplinary team) meeting every Tuesday at this hospital so hopefully today or tomorrow I will hear something for an appointment for all the results and outcomes.

So although a lot has been done I am not yet any further forward as I’ve had no more results. Being off work at the moment has given me a good chance to slow down, to look after myself and just generally reflect on things. It’s my birthday in two days time so expect a post about going forward and how things have changed, particularly my outlook on life. My thoughts and well wishes to everyone suffering from a rare disease and to those special people who help us through it as well.

Finally I’ll leave you with a quote from Terry Pratchett that I’ve always liked anyway and seems particularly appropriate now as Cushing’s affects 1 – 2 in a million people each year:

“Million to one chances happen nine times out of ten”

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