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Tick List

21 May

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The first 25 years of my life were pretty uneventful health wise. The next 25 not so much…

  • Type 1 Diabetes
  • Foot ulcer x 2
  • Bone infection

So, I’m due a break. Right?

Well, apparently not.

Today I got my next official diagnosis of Sarcoidosis.

Sarcoid what?

If you want some info is here.

I’ll give you the highlights

To some of you it may sound a bit familiar……

“Sarcoidosis is a rare condition that causes small patches of red and swollen tissue, called granulomas, to develop in the organs of the body. It usually affects the lungs and skin.”

“There is currently no cure, but symptoms can usually be managed with medicine.”

“It’s thought that sarcoidosis happens because the immune system has gone into “overdrive”, where the body starts to attack its own tissues and organs.”

Yep! It looks like my good old immune system has been on a drinking binge and once again I’m the target of its friendly fire.

Ah well. I’ve been here, done that. I can do it again (and let’s face it I have no choice).

Having said that I’ve done this before, I have learned from how I did things 25 years ago with my T1D diagnosis.

This time:

  • I got treatment sooner.
  • I’ve taken time to understand the basis of the condition and treatment.
  • I’ve found the organisations and charities.
  • I know there is a community out there of peers that have lived experience and that I can talk to them when the time is right. For now, I will just lurk and learn.

I also have may learnings from my time managing my other conditions.

I will have a new team of HCP that specialise in respiratory conditions. I need to build relationships with them. I also need to join up my care between clinics and HCP’s. This new condition can affect my kidneys and T1D increases my risk of kidney issues too. The steroid pills I may have to take can also affect kidney function and blood glucose levels. So, I need to ask the right questions at the right time to make sure all is considered and joined up. I still believe that the only way that I will get true patient centred care is if I manage and drive it myself, using my consultants as the subject matter experts on the clinical side. I am the only constant, the only one in every clinic appointment, I am the one at the centre.

CT scan results if you like detail:

  • Lymph nodes in the centre of my chest between the lungs
  • 5mm node in the right lung
  • Liver, kidneys and pancreas clear
  • Blood tests booked to monitor kidney function (it dropped right off recently but has started to recover.
  • Home monitoring of blood pressure and recorded for two weeks then review (one of my BP pills can cause kidneys issue so we agreed that I should stop taking it) so we can get my BP back in range.

Strange irony of lockdown is that all the appointments, test and scans needed to diagnose this have been faster than I’ve ever know due to hospitals and Dr’s surgeries having to postpone routine appointments. Also, that if I’d not have been locked down, I would probably have seen myself as too busy to call the GP. I’d have just struggled on.

There we have it. Another condition added to the tick list.

That’s enough for me now. Isn’t it?……..

Live Long and Bolus.

Grumps.