Complete lung function test, recently diagnosed SLE

[Loopy87]

Hi all,

I was diagnosed with Lupus around 2 weeks ago, I was sent for all sorts of tests one of which was chest x-ray as have difficulty breathing and chest pain.

Got a letter yesterday saying I've been made an appointment at the cardiology department next week for a complete lung function test. Could this be a result of my xray? I've not been told anything came back on this just seems a sudden/quick appintment.

Has anyone had these tests not sure what to expect? The letter states 45min appointment.

Thanks in advance x

[Lupiknits]

I had an x ray, one of these, and a heart ultrasound as soon as I was started on hydroxy and seen by rheumy. He called it all an "MOT". Mine consisted of a lot of breathing into a tube, in a glass box. It started with me breathing normally so they could get a baseline, then lots of breathing in and out as hard as possible. It was a bit like being in labour, with the shouts of "push, push"! I was nervous about the glass cubicle, so I took a friend who I could see as it was going on. All was fine for me - your consultant is being very thorough.

Others can correct me if I have the lung function test wrong - there are different kinds.

[Loopy87 in reply to Lupiknits]

Thanks that's put my mind at rest all new to me too I'll probably take someone with me as well but glad its nothing to worry about and procedure x

[Polina44]

Hi, yes all normal. You should have one of these annually.

Best wishes 🙃

[Loopy87 in reply to Polina44]

Thank you 😁

[Loopy87]

That's good Thank you for your replies 😁😁 xx

[whisperit]

Yep, like lupiknits says, the usual one involves putting a clip on your nose and blowing hard into a machine to empty your lungs, several times, then falling over in a faint.*

*optional

It's really nothing to worry about. x

Oh I didn't have to go into a glass box either. I think the nurse was hoping for a cwtch.

[Loopy87 in reply to whisperit]

Thanks I'm glad it's the usual just wish they had have told me to expect it but I'm not complaining I've been well looked after by GP and Consultant so far they've been very quick with everything. 👍xx

[whisperit in reply to Loopy87]

More seriously, I had severe lung inflammation and was diagnosed with interstitial lung disease shortly after my auto-immune condition was diagnosed. The good news is that this has responded very well with standard treatment. x

[Loopy87 in reply to whisperit]

Did it take you a long time to get a diagnosis etc? I worry for the lungs as chest pain and rapid heart beat atm fingers crossed nothing there. Oh sorry to hear that do you manage ok with the meds has it got better or is it the same as the Lupus goes through phases/flares?

[whisperit in reply to Loopy87]

The lung problem was the thing that got me diagnosed with UCTD about a year ago. It came on very rapidly over just a few months. Like you, I had rapid heartbeat and chest pain too. I've had a year of treatment with hydroxycholoroquine and steroids for the lung inflammation and the underlying autoimmune condition, plus beta blockers for the heart. Cardiologist reckons the heart problem is secondary to the auto-immune condition. So far, I haven't had any flares. Lungs have cleared up very well, heart is improved, but other problems remain (eg extreme fatigue, swollen and sore joints). But obviously, everyone has their own pattern - no-one here seems to have the same story to tell! x

[Loopy87 in reply to whisperit]

I'm glad to hear you have responded well and hope you continue to be as well as can be! Yeah i agree everyone experience so varied I'm feeling apsoloutely horrible at the minute so eagerly awaiting starting the medication on the 14th....not so much the side effects mind haha. Its hard to accept this is forever I manage well with the pain though got used to it so even a slight improvement would be nice x

[whisperit in reply to Loopy87]

Yes. One day at a time, as they say....hope it goes well for you x

[Loopy87 in reply to whisperit]

Thanks, you too x

[Loopy87 in reply to whisperit]

Never heard of this glass box thing I'll let you no if I get the pleasure of a go 🤣🤣

[Lupiknits]

I got my appt for this so fast, by phone, the actual letter and explanation arrived the day after the test. I rang to ask about the procedure and the glass chamber freaked me out (bad childhood experiences involving wardrobes and three older mean brothers haha). As whisperit said, I thought I would pass out at one point at the encouragement to empty my lungs hard and fast. My friend sat sweetly encouraging all the way through, though she told me later she thought my eyes would pop out! Please don't let this put you off. Next time I'll be happy to go on my own.

The next week I had my heart ultrasound. It was held in the nuclear medicine wing on a Saturday, deserted, and a bit spooky with all the lead lined walls, but the technician let me watch my heart beating, and played back the video she'd recorded. . That was fascinating. The auto-immune path can have some good memories!

[Loopy87 in reply to Lupiknits]

Ah right doesn't sound too drastic I suppose lol. I need to work on the stopping smoking asap I don't no how easy I'll find it 😐 but I'll manage. My letter just says something about I won't have to go on a treadmill haha thank God lol.

I've never known anyone have a heart ultrasound and no mention of it to myself. Sounds a bit spooky! Did you have to stay all night? Hope all your results came back clear and your well x

[maurice1 in reply to Loopy87]

I've had two heart scans. One was an echocardiogram which is a simple scan where they just ask you to lie on your left hand side and its over and done with in a couple of minutes. I also had a TOE test (transoesephegeal echocardiogram). The first was done by a physiologist and the second by a consultant. I was under sedation and was a day patient. They pass a probe down the gullet and scan the back of the heart. It's clever stuff. It wasn't fun but neither was it dreadful. Good luck with your tests.

[Loopy87 in reply to maurice1]

It doesn't sound fun never heard of that I'm hoping I don't have to have it! Thanks hopefully be all over for a while soon lol xx

[Lupiknits]

My heart ultrasound was part of the thorough check the rheumy did at the time. Actually, now I think of it, I had a kidney function test, too. The heart one was easy peasy - very much like an ultrasound of a baby when you are pregnant. Only took 10 mins.

As far as I remember the kidney, it was like a ct scan. I had to drink plenty and then was given an injection which would show up how my kidneys function. Fortunately they warned me that the injection would make me feel I badly needed to pee for a moment, but no one had ever had an accident. That was no more than ten mins, including my race to the loo when they had finished.

[Loopy87 in reply to Lupiknits]

Ok thanks gives me an idea of some things I may need or should expect so won't be alarmed if asked to go. I'll be glad when all the prodding is over I hate hospitals and needles haha tho most people do too. Thanks x

[EOLHPC]

Glad you're here loopy87. You've got some great replies...nothing for me to add, really...except maybe to say that at my first rheumatology lupus clinic appt. my hero rheumy ordered lung, heart etc function tests and explained that at the outset of care for any systemic illness its important to run these comprehensive "baseline" tests of vital funtions: heart, lung, kidneys, bloods etc...and that the results of these tests are documented in our records so that all future test results can be compared to them while monitoring changes in our condition

Hope you'll keep us posted

Take care

🍀🍀🍀🍀 coco

[Loopy87 in reply to EOLHPC]

Thank you, yes it makes sense that they would do that I think I'm lucky with consultant and GP they've ran lots of tests and so quickly be good to have a record as you say, think panicked a bit as worried about chest pains at min but not been too bad today.

Hope you are well too And yes will keep all posted thanks 😊 x

[EOLHPC in reply to Loopy87]

👍👍👍👍🍀😘