Excessive?

[Porphyriamaniac]

I'm now under four different consultants, liver, skin, blood and metabolic medicine. I knew it'd be a multidisciplinary type approach but never realised it'd be this multi! I feel guilty, esp in the current climate, like I'm wasting resources as im not properly poorly, but they keep sending the letters, so off I pop. Maybe they all just want a look at the vampire woman??😁 anyway, it's my first appointment with the liver Dr next week, very long time coming, bit nervous he might want a biopsy, with the iron/pprphyrin issue aswell, even though my levels have stabilised after my recent treatment. Is biopsy the best way to check for fibrosis? Or fibroscan? Or bloods? I'm probably nattering over nothing. Thanks for listening anyway, Stacie. X

[Hidden]

Hi

I was diagnosed with Nash with some fibrosis after I'd had a biopsy. I found biopsy ok just a little uncomfortable as they numb the area. I'm sure you will be fine.lpts of love Lynne xxxx

[Porphyriamaniac in reply to Hidden]

Hi Lynne, thanks so much for your reply 🙂, hope you are well? Yes I'm thinking having done a bit of reading that biopsy is probably the only way to know for sure. I will see what they suggest i suppose. Thanks for the reassurance aswell, I hope he doesn't suggest a biopsy but if that's what it takes I'll do it. Xxxx

[Hidden in reply to Porphyriamaniac]

You are welcome. Take care. Love and hugs Lynne xxxx

[Hidden in reply to Hidden]

Lynne Master of ....., well you know 😁.

Nice to see someone say a biopsy was not too bad. I was threatened with a biopsy three days in a row and it scared me sh....... a lot, after what I had been told. Nice one 😁

Milo

[Hidden in reply to Hidden]

Hi

Glad I could help a little bit. I'm hoping my consultant will book me in for another one soon to see what's going on now? So much pain, it's unbelievable. Take care Lynne

[Hidden]

Hi Stacie

Hope they sort you out soon. Just make sure each doctor knows what's happening with the others 😁

Take care

Klodian

[Porphyriamaniac in reply to Hidden]

Thanks klodian 😁, easier said than done I'm under two different trusts, the don't collab at all 😂

[Hidden]

Hi Stacie,

You seem to be in demand. I think it must be a good thing that they all find you interesting at least as long as they are "communicating" with each other. They would not all be wanting to see you if they felt their time was being wasted, so I don't think you should worry about over-using resources. Maybe you should think of yourself as providing further training and information that will help others who come after you?

Best wishes,

Mary

[Porphyriamaniac in reply to Hidden]

Hi Mary, I never thought of it like that but I like your thinking! 😁. I'm unsure as to what the dermatologist will be able to do for me but it was the haemotologist's idea. We will see. 🙄

[Hidden]

That's very true!! You must need them all and the very best of luck with everything. Love and hugs Lynne xxxx

[GrandmaDylan]

Hi Stacie, I'm sorry that you're going through the mill with all the appointments and tests. I feel like a frequent flyer at my hospital, a week doesn't go by without me seeing one specialist or another 😳 I am under the gastro team for my bleeding duodenal ulcer and gastritis, a hepatologist for my autoimmune hepatitis and Salford Royal for dermatology for my spider naevie. I should have had 2 appointments on Thursday but the one for the dietician was cancelled as she was ill. I've got another appointment this week to see the specialist pharmacist who will oversee and monitor me when I start taking the steroids and immunosupprants. I too feel like I'm single handedly draining the nhs. That said I'd rather not use the nhs at all and have good health. Take care. Deb

[Porphyriamaniac in reply to GrandmaDylan]

Hi deb I totally understand, but compared to me you are poorly and symptomatic, so I don't see you as a drain, all I am is tired. But as others have said if it wasn't warranted they wouldn't see me I suppose, same for you too. I feel I do need to to be kept an eye on so I might suggest the hepatologist does this rather than clogging the haemo clinic up, what I have isn't a blood disorder although it affects it, bloody confusing! Lol I don't think any if them know what to do with me! 😂. I'll let you know how I get on anyway, I'm there weds, Thurs, Fri! Xxxx

[Bermuda1]

Make the most of it , that's what it's there for . Porphria is indeed a complex condition . I am glad they have you a bit m more stabilised . Once you have it you may will find you need lots of assessment ongoing. I know a couple of people with it . some who have porphria have Hemochromastatis which means they will indeed need to keep an eye on your liver too . X X

[Porphyriamaniac in reply to Bermuda1]

Hi Bermuda, I don't have the main haemochromatosis gene mutation but I do load iron so my treatment is the same. I'm going to see if the hepatologist will monitor me and my bloods as opposed to the haemotologist, my liver is where my worries lie with the extra hcc and cirhossis risk with my condition. That may condense the appointments a little. Xxxx

[Bermuda1]

Good luck , you still !at bed up seeing them all just not on such a frequent basis