Today was the day.: Relatively unique... - Lung Conditions C...

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Today was the day.

LungNRestless profile image
7 Replies

Relatively unique to me, my body comes out in rashes when my lungs are struggling. The rashes can come out of nowhere and will often split my skin. In a couple of area's they have permanently changed my skin.

I see a great dermatology consultant who said she's never seen anything like what i have.

So today i went to the hospital for a biopsy, except the wrong letter had been sent and i wasn't having the biopsy today.

For a few reasons, mainly that i metabolise anaesthetic to quickly and i also have a history of healing too quickly and over stitches. I will have a biopsy before Christmas but in the day unit and not clinic, with my wound checked daily afterwards so we prevent me healing over my stitches.

After consulting with the head of dermatology, my consultant is sending me for genetic testing. More from an academic prospective.

It's been a running joke with my friends, most of which are medical that i am not human, my nickname is Deadpool, and should be in a medical journal. When i joked about that today in response to the genetic testing, the consultant said ' Oh you will be, and i'm going to write the article' 😂 So finally the day has come where my case is going to be written up for a medical journal, once we are further ahead with testing etc. We've all spent the last 18 months wondering which consultant was going to be the first to ask me 😂

Then we got caught in a hailstorm & torrential rain walking back to the car.

Curled up with a blanket, next to my fireplace which i've filled with LED candles. Definitely book reading weather.

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LungNRestless
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7 Replies
Mellywelly profile image
Mellywelly

Fame at last eh!!! 🤣🤣

Izb1 profile image
Izb1

Well that was an eventful day for you LNR. Your rash sounds painful, I hope the biopsy goes well for you. Awful being caught out in this weather, glad you curled up with a blanket x

BrigidsFire profile image
BrigidsFire

Have you been tested for any autoimmune conditions?

I have systemic lupus which can damage major organs. It has damaged my lungs. It can also cause rashes on the skin. The most common is a malar rash on the face, but they can appear all over the body when lupus is flaring up.

I would imagine you have been tested, but if not it may be worth seeing a rheumatologist for a blood test for the markers specific to lupus.

LungNRestless profile image
LungNRestless in reply to BrigidsFire

Hey, I’ve seen a rheumatologist, I don’t have lupus. I probably should have clarified, I’ve had countless lung tests and biopsy’s which revealed I have hypersensitive pneumonitis. This is what is causing my rashes, they’ve just never seen it before 😊

Alberta56 profile image
Alberta56

I hope they can find a way of controlling this condition. Best wishes. xxx

Patk1 profile image
Patk1

Love Yr humour.Shame about the rain+ hail.sounded lovely,curled up in blanket with a book and candles x

LungNRestless profile image
LungNRestless

Hi, no I don’t get it on my face but we have now identified what it is. A fairly common skin bacteria that is made worse by immunosuppression. I’m on a course of treatment which appears to be working atm

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