Things are moving! 😁(porphyria)

[Porphyriamaniac]

Hi everyone,hope you're all as well as you can be? As some of you know from my previous posts I've been waiting to see the haemotologist about my porphyria and the iron loading. Finally got an appointment for today after a 20 odd week wait and phoning pals. They can't do anything about the porphyria at my local hospital, though I've only found that out today and I think it will be news to my gp too! I have to go to leeds so its a good job id already been proactive and been on to my gp to get in touch with the main man that deals with what I have. They were able to do my genetic testing for haemochromatosis today though, off to newcastle and results in four weeks, a referral to a dermatologist and starting the blood letting soon, they were great really even printing my mum some leaflets off as they don't have any and it's bloody complicated! The haemotologist said, whilst grinning like a Cheshire cat... the main man( a well known biochemist I believe?) at Leeds will be very, very excited indeed to see me 😂😂 just how rare is this porphyria lark? I've now got visions of him rubbing his hands together whilst grinning like Dr evil as I walk in and using me as his own personal guinea pig! 😆😆 I'll let you all know how I get on anyway, just glad things are moving finally. Below is a link to blt's porphyria page for anyone interested who hasn't seen it, always good to raise awareness! 😉 take care everyone. Xxx

britishlivertrust.org.uk/li...

[G2018]

Hi - great that things are taking a step in the right direction, it’s always good to know you’re in touch with the people who can help.

I’ve just had a look at the info about Porphyria, it’s not something I’ve heard of before. I’ve found the BLT website really useful for explaining to people about Budd-Chiari. When I first tried to explain to my employers I just ended up making really odd hand movements and pointing at my liver lots. Sending a link to the website was a lot easier.

[Porphyriamaniac in reply to G2018]

Hi G2018, how are you? Hope you are well? yes, it's such a relief to know I'll be in the right hands. Yes i also think the blt's pages are really good for explaining things in plain English without too much complication, I've read most including budd chiari as I like to read and learn. I think I'll print some pages off for family and employer or links. I struggle trying to explain too, people easily lose thread( and I can't blame them, I drive myself mad 😂) but then if i just try to keep it simple and say it's liver related they assume i've got it from drinking too much, then cue the judgy faces! I've not told many people apart from family and on here. Xxxx

[G2018 in reply to Porphyriamaniac]

I’m all good thanks - I’ve been really fortunate that my experience has been pretty positive and diagnosis has resulted in a huge improvement to my day-to-day life. Just a case of wait and see what the future holds.

I think the alcohol liver connection is deep rooted in most people’s minds. The one thing I never realised is how alcohol is treated as the norm, and it’s unusual (almost unacceptable) not to drink in some social situations. I’ve found not drinking anymore to be ok, however I feel that I have to justify it, and that leads conversation in quite a long, complex (and if you’re squeamish, graphic) direction. I think ‘I’m driving’ will become a good go to answer, may even get a fake key to carry at all times

Hope your tests mean you can move in the right direction, and that ‘Dr Evil’ turns out to be quite nice when you meet them in person!

[Porphyriamaniac in reply to G2018]

I'm glad your doing good, proper diagnosis and treatment makes all the difference! That's not always so easy is it when its quite rare what you have. Yeah the drinking, everyone thinks you're strange if you don't nowadays, good idea about the keys 😁. There was a mix up with my bloods on Mon, so had to go back and give more yesterday but aside from that it's moving in the right direction! I'm sure Dr evil will be lovely 🤣 and I'm sure his are the right hands 🙂. I will let you know how I get on anyway, take care. Stacie xxxx