Really scared

[Wolf1]

Hello guys

Been a while since I’ve posted anything. Basically as you know I was an in patient in St Thomas’s for two weeks in Nov under care of Prof Cruz. The lupus had attacked my lungs. Shrinking lung disease and fibrosis in both lungs plus hemi diaphragm 😢. So breathless which is getting worse, plus pain. Got to have bronchoscopy as urgent. I’m so scared!!! I’m no wimp- as had so many tests and procedures- but cos I’m so breathless and they have to put scope into lungs I so worried about panicking. I can’t work anymore as a nurse. I’ve been dismissed on ill health grounds. Lupus is robbing me of so much xx

[Angelamarston1963]

Hi I’m so sorry to hear that you are experiencing these problems . As a nurse you probably have more insight into how the bronscopy works . Speak to the consultant about your fears - they may be able to reassure you . Take care

[Wolf1 in reply to Angelamarston1963]

Thank you. They are all very good at Guys and St Thomas’s xx

[whisperit]

Oh, you poor thing. Sometimes these conditions can make us really scared. But maybe it helps to share a bit?

One thing that has sometimes helped me is the thought that the clinicians doing these procedures will always have faced more difficult, sicker and scared-er patients than me. My guess would be that pretty much everyone who has a bronchoscope will have been feeling scared and breathless, so they will be used to doing it in the most reassuring and safest way possible.

Blimey, though, it's a brutal business, this running with the wolf, isn't it? I'll be thinking of you and looking forward to your report from the front line x

[Wolf1 in reply to whisperit]

Aww thanks so much. I’m a very resilient patient- as I’m sure we all are!! You are right of course. I’m obviously not the first scared, breathless person they’ve seen xx

[whisperit in reply to Wolf1]

Yes, we have no choice, do we? A long story might be vaguely relevant. About 10 years ago, I climbed onto the lead roof of a country church. On the very topmost part, printed into the lead, was the outline of a shoe, a name, and a date - 1706. I put my foot in the print and all of a sudden, it brought home to me how we are all following the same path through this life. There is always someone who has done this before, who has loved and suffered as we have, hoped and feared like we do. I still sometimes find comfort in this thought when I am feeling alone and sick and scared x

[Wolf1 in reply to whisperit]

Beautiful thank you xx

[Melba1 in reply to whisperit]

That’s a lovely very apt story but why were on the roof?! X

[whisperit in reply to Melba1]

I was just popping into the church whilst I was on a cycling holiday. There was a ladder into the belfry - and then another ladder onto the roof. Pure curiosity. That was before I broke my femur ;D x

[Kay2006 in reply to whisperit]

That is so beautiful!!! I have had Lupus for 22 years since I was 8, I have dealt with too many things to count, but you are absolutely right, there are people out there who have done or may even be going through the same things we are at this very moment. It feels good to know we are not alone!!! Thank you for those beautiful words!!

[Melba1]

So sorry to hear all you’ve been through. Hopefully these tests will lead to them finding useful information that will help treat you? Scary stuff but like you say we’re a tough bunch and I find the thought and fear of these things is often worse than the reality as they’ve done it so many times they make it as quick and painless as possible. Good luck, let us know how you get on

X

[kingsnorth]

Sorry l cant give any words of wisdom but send you lots of love. I have lupus sjogrens.and now PBC these autoimmune diseases are taking over my life more money needs to be given for research. You were in good hands eit Prof DCruz l met him when l was under care of Prof Hughes x

[Lily77]

I am very sorry that you are so breathless and that this requires a scary procedure...you must say that you are very nervous and ask for all the help that they can give you for you to feel more calm and comfortable and, having been through tough things like 3 bone biopsies and 3 ascities drains myself, my very best thoughts and prayers will be with you. Don't worry about what you will do when you are well, if you have had the brains and courage to be a nurse then new opportunities will open up for you when you are well again. With hugs Lily

[Ericanemec]

Having Lupus and being a nurse just should not even be in the same sentence. Exposed to all those illnesses and vaccinations couldn't help your Lupus at all.

[Wolf1]

Thank you for all your encouraging responses. Apparently my shrinking lung and hemi diaphragm will never get better😢. They are trying to prevent it getting worse and affecting my other lung- even tho that’s already got fibrosis evident. Being a nurse was my dream from being a little girl. I’d practised a long time before I became very ill. Once I was on immunosuppressive drugs I had to be very careful which patients I cared for. I’ve been dismissed now, like I’ve said. I’ll keep you updated after I’ve seen Prof on Friday xxx

[whisperit in reply to Wolf1]

Please do. Fingers crossed for you x

[leslieliesel]

Oh Wolf1...I am truly sorry that lupus is attacking your lungs ...and yes I get the fear... I hope you have a nice calming nurse by your side..and maybe some medication to take the edge off...My very best Xx

[Wolf1]

Just letting you all know outcome from seeing Prof on Friday. I was with him for over an hour. My lungs and diaphragm will never get better😢. My heart is good! I told him about the terrible pain I’m having in all my joints. He explained that because I have lupus, mixed connective tissue disease and fibromyalgia. My pain could be coming from all of these. So plan back on dreaded steroids! He said if I take high dose for 5 days and pain goes or lessens then it’s my lupus causing pain. If it stays it’s more fibromyalgia- as steroids don’t touch that type of pain. Day 1 of taking them yesterday I did feel a bit more comfy, had more energy. Xxxx