I'm having a full pulmonary lung function test tomorrow. What can I expect? I've also a heart ultrasound in may and a little scared by it all if I'm honest.
I do struggle with my breathing getting up stairs and walking even talking sometime I get out of breath just assumed this was normal with extreme fatigue from my autoimmune diseases.
What are they checking for and how does lupus affect our heart and lungs? Thanks
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MissFG
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The heart ultrasound is not really much different to any other sort except they have to place the wand between the ribs - u/s doesn't get through bones too well! You have to lie in particular positions and the wand does get applied with more pressure than usual. But it really isn't anything to worry about.
Not sure about the lung function tests as I have never had any myself - spirometry I assume:
All of them are to make sure there isn't another reason for your breathlessness - it may be due to your autoimmune disease itself or there may be something else that they can help you with but you have to know WHY before you can identify the best way to do that.
I've had both. The ultrasound is really nothing to worry about. The lung function test is a bit strange as the physiologist will be shouting "go, go, go!" to encourage you when exhaling but it's not painful so don't worry too much.
😆 Great description of the lung function test: this is exactly what mine was like when my lupus clinic was doing all my baseline function tests years ago
I've had both too - more than once! You have to undress to the waist for the ultrasound and lie back with a slight tilt here or there, it takes about 20 minutes but is painless. Mine was to exclude pericarditis & cardiomyopathy among other things.
Lung function tests involve being weighed and measured. You are then asked to sit with a type of clothes peg on your nose with a snorkel type tube in your mouth which connects to a computer. You will be asked to inhale and exhale in various different ways to the best of your ability and they can gain a lot of information about your lungs & airways. The technician will talk you through every step all the way through but won't comment on or discuss results. It is tiring and I cough a fair bit afterwards but that's as bad as it gets.
From experience, I would recommend that you ask for a printout of your PFT results from the consultant now and in future so that you can keep an eye on things yourself. He/she might look at you a little quizzically but I have been fed some incorrect information from very senior people so no-one is infallible!
I struggle with my breathing and hate anything over my mouth nose as I panic. I'm always bunged up and feel like I'm full of cold so this doesn't help. The thought is already panicking me 🙈 I expect to feel light headed but will try to stay calm least my daughter can come with me so I'm not on my own.
Do I ask for the PFT on the day tomorrow or when I next see my rheumy? Was supposed to be in 3 months but I've got a letter saying august! Nearly 6 months and I've only just been introduced to hydroxy. But I suppose if anything shows up they'll have me in.
I'm used to asking for my results I get them for everything as I monitor my thyroid function and have blood tests every 4 weeks. Otherwise I'd be in a tight mess waiting for the doctors and consultants to do anything
I certainly didnt want to panic you. Just tell the technician your difficulties and they will work around them. I couldn't swallow during one test so they simply did it another way.
My tests were organised by my lung consultant but I have had others that were requested by rheumatology. The request may have already gone in and your appt will follow in due course. Above all, DO NOT WORRY! xx
It is natural to sometimes become overwhelmed with things which is why is important to speak to others as this can help relieve worries you may have. If you would like to speak to someone over the telephone we have local LUPUS UK contacts that cannot give medical advice but are there as a listening ear to offer support and advice. These contacts mostly have lupus themselves and are volunteers. If you would like more information on having a local contact to speak to, you can email me at chanpreet@lupusuk.org.uk
The heart and lungs are quite commonly affected in people with lupus. We published a factsheet on ‘LUPUS: The Heart and Lungs’ which you can read here: lupusuk.org.uk/wp-content/u...
The ARTP’s (Association for Respiratory Technology & Physiology) website discusses lung function tests in detail which you can read here: artp.org.uk/en/patient/lung...
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