LUPUS UK

Lung Tests

Hey all

Me again! Sorry to be posting once again.

Apparently the hospital tried several times to get hold of me last week but with no success, although I was free and had no missed calls or voice messages! I received a letter yesterday to tell me to stop Metartrexate with immediate effect along with the folic acid. The letter also said I will hear from the respiratory team within a week to have urgent tests following my recent X-ray and CT scan.

The tests suggested are bronchoscope and wash but also to tests for PCP infection. Also possible lung biopsies.

Has anyone else had these tests and should I be worried.

I am starting antidepressants today as I am really struggling to cope on my own. My condition is quickly deteriorating and I am scared.

I also have my PIP assessment at home tomorrow and have read their not very good at being truthful. Does anyone have any tips please?

Thank you all I would be lost without your help and support.

Big hugs ❤️💞

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Please never be sorry about posting! I'm afraid I don't know anything about the lung tests. I hope your antidepressants help, but remember they will take a little time to build up before you feel any effects. I understand very well the scared and alone feeling x

For the PIP assesment, just be completely truthful about how you are on your very worst day. Don't put a brave face on it, don't be embarrassed, just tell them. I found my assessor was double checking with me everything on my application, with some extra questions ( and asked if I lived alone). I know very well how stressful it is.

We're all on your side. Let us know how it goes x

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Thank you Lupiknits

I am going to read my application again today as it was a while ago I completed it and lots has happened since. I guess I update them face to face?

Linds x

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If you have any more letters etc since the application, show them ( and your antidepressants). Then tell them about the hospital trying to contact you urgently. Show them the most recent letter. That will make it obvious that your condition has become more urgent since your application. If you can find the number to contact wherever the broncho people are in the hospital, you might get more info about an upcoming appt. x

I don't know how houseproud you are, but do not make any great effort to make the room look super presentable. They pick up impressions from that. I almost wish mine had been a home assessment ! xx

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Thank you for the heads up, my mum is going to be with me as she is helping me out with day to day tasks etc and I get really emotional when I talk about all that's going on.

Were you successful in you PIP?

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I was successful, though terrified! I had a good friend with me who was able to chip in with extra comments. At one point the assessor was trying to test my hands. Being a good girl, I tried to co operate but my friend blurted out "Stop it! You're hurting her". The assessor very quickly stopped. After that, when it came to my hips I just told her I couldn't and simply wasn't going to try.

Having your mum there, who can give support is excellent x

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Sorry LS: i don't have experience of these lung procedures...but i want to send you my love ❤️ & every best wish for this PIP appt tomorrow + these procedures....also i hope the antidepressant helps: when i've needed them, they've really really helped!

Please do keep us posted

We're right by your side 👭👫👭👭👫👯👯‍♂️😉

🍀😘🍀😘🍀😘 coco

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Thank you Barnclown! I would be lost without you all xx

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Me too 🙋🏼🍀😘

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