Pulmonary function tests

[Ajack]

Hi

My mum has systemic sclerosis which has a massive impact on her lungs and breathing. She’s now in her third year without having the normal pulmonary function tests and she feels her breathing has got significantly worse in that time.

She hasn’t had the vaccine due to her condition and has just continued shielding instead. When she speaks with anyone about the PF breathing tests she is advised that there could be a risk from them as her local hospital don’t test people before they blow into the machine. However she really needs her breathing monitored.

My question was does anyone know of anywhere that is carrying out these tests in a safer manner ie testing requirement beforehand and patients expected to isolate before having them? She would go private if needed but I think she will only have them if she feels there are more safety precautions in place to protect against covid.

Any advice would be appreciated.

Thanks Alex

[LucyJean]

Hi Alex, I am sorry to hear about your concerns. I am also a little bit confused as to how this could happen. Firstly, does she have a Consultant Rheumatologist or Respiratory Medicine Consultant regularly monitoring her condition? It sounds like she has established lung issues so I would expect that they should be regularly seeing her and speaking to her. It also sounds like she must see someone for them to have made the decision about her not having the vaccination. In my understanding the only reason that this decision would be made is because she is on some form of immunosuppression that means she can't have the vaccine, but this seems very rare as really she should be a priority for having the vaccine and subsequent boosters. Unless of course she has some other unique reason, but again I would have thought only a Consultant could decide this. The pulmonary lung function tests are essential monitoring tools, but if she cant have them then a Consultant Respiratory Physician can also see her and assess function through other means and use other tests such as CTs/MRIs/Xrays to see if there has been deterioration. Depending on where she is there may be other hospitals that her Consultant could access.

Whatever is happening clearly she needs to be seen by someone and decide a clear plan of action. It is not acceptable to just watch and wait while things get worse.

I hope my rambling makes some sense

All my best

Lucy x

[LadyTrundle in reply to LucyJean]

I've just (finally) had my first lunch function test to give us a benchmark - my local hospital (ST Richard's in Chichester) absolutely said I had to have a Covid PCR test then isolate till the lung test. I've heard of other hospitals doing the same. Quite apart from LucyJean's excellent advice above, perhaps your mother could ask for a referral to another hospital that does require a PCR test?

[Ajack in reply to LadyTrundle]

Thank you - yeah I feel all hospitals should be asking for testing when it comes to this kind of test where they can’t guarantee it’s completely safe. Hopefully we will see if she can be referred somewhere else that is carrying them out in safer conditions. I think the south seems to be much better than the north for this!

[Ajack in reply to LucyJean]

Thanks for advice Lucy, she has a rheumatologist specialist but the hospital she is being referred to doesn’t require covid testing or isolation so she is too scared to have the tests. I think she is still too nervy for the vaccine her condition was previously stable but has been progressing last few years so she feels the vaccine could work against her! Makes any monitoring of the condition a nightmare though as she really needs to be having these LFTs x

[Redwine53]

I have a lung function test booked for Monday, so I hope it goes ahead. Nothing has been said about having to have an lft though. I had a lung function test two years ago when I was diagnosed, and also a CT scan which showed I didn’t have ILD. I at The Whittington hospital North London.Your mum must have a rheumatologist consultant and she certainly needs to be in touch with them. Good luck.

[Ajack in reply to Redwine53]

Thank you

[Kvirdee]

Hi Alex I had my lung function few months ago in royal Brampton hospital in London and was asked to have covid pcr test 48 hours before the test and isolate after until lung function test. They took all the precautions for safe testing. I am on immunosuppression and was advised to have vaccinations.

I would suggest she has her vaccinations as they have helped me as I recently had covid and have fully recovered.

She should get in touch with the hospital and hope everything goes well.

Good luck

Kuldip

[Ajack in reply to Kvirdee]

Thanks Kuldip, yeah I think we will see if she can get referred somewhere else. Very pleased to hear you had a good recovery from covid x

[Sophiebun11]

She can have a Spiral CT Scan. My Rheumy order me one every year or so.

My Pulmonologist has me do at home spirometry testing to see what my peak flow is.

He said I will NEVER need another PFT as I had an acute asthma attack during the last one and it's too hard for me.

She can buy a Peak Flow Meter for under 20 dollars on Amazon or EBay or anywhere.

amazon.com/Omron-PF9940-Pea...

There is no reason not to get the vaccines and booster. Having an autoimmune disease or being older were the first to get them. Why does she believe she shouldn't have one. Is that an excuse or did a Dr. tell her that? My Dr. told me to get one and I have Sclero and kidney disease and other AI problems.

Best wishes to you both.

[Ajack in reply to Sophiebun11]

Sorry just seen this - Thanks Sophie this is really helpful. I think with the vaccine because she feels her condition is progressing at the moment she is very reluctant to have the vaccine. We all have the same view as you that she should just have this. It’s just making the monitoring of her condition a nightmare as it’s not really safe for her to have any of these tests x

[Sophiebun11 in reply to Ajack]

Her fear is what is going to make her sick from Covid. She needn't die of Covid. Cancer patients get the vaccine while having chemo. I have cancer and the other diseases I listed and was the first in line to get a vaccine. The more health problems you have and the worse you progress the more important it is to get the vaccine regardless of the tests she wants to get. The vaccine can save her life. She is mixing it up. Maybe her Rheumatologist can explain it to her. Best of luck convincing her to do the right thing.

[Poppy221]

I have pulmonary hypertension with limited systemic sclerosis and am partially immune suppressed. I've had three COVID jabs so far. Makes me feel rotten for a couple of days and then I picked up. But having my back manipulated by an osteopath also makes me feel rotten.

I had a lung function test on a hospital machine back in the Autumn - and discussed it with the specialist. That machines have a one time use mouthpiece with a big filter in it that stops you breathing bugs into the machine and would protect you if there are any bugs in the machine. It is a big plastic tube with a flying saucer middle where the filter is. A new one was put on the machine every time you have a test. This is one of those big lung function machines where you sit in a glass cabinet.

That was in a big teaching hospital at the chest clinic. I was the only patient in the waiting room as well.

I've found that on the whole telling medical folks you are partially immune suppressed etc gets you a lot of help. I had to go into A&E last summer and led with "I'm immune suppressed" and within a few minutes I was out of the waiting area and into a room on my own.

[Ajack in reply to Poppy221]

Thank you just seen this really helpful I’ll pass this onto my mum ❤️

[Aarts]

You can request at home fvc test kit with an online app to monitor it. You can then upload your results so they can be seen by health professionals. Good for intermittent checks but best to get a baseline one to go from x

[Ajack in reply to Aarts]

Thank you

[Poppy221]

Further thought on your Mum's lung function - does she have stomach problems and acid reflux? I have damage to my lungs from both acid reflux and pulmonary fibrosis. The acid reflux is now pretty much under control and has been for more than a year and my last lung function test showed quite a lot of improvement, because the acid reflux damage has improved a lot. I am also on mycophenolate mofetil and have been for several years now - and that was to stop the pulmonary fibrosis from progressing, and it worked. So my lungs will never be fully right, but they have improved and shouldn't get worse - providing I keep on controlling the acid reflux.

[Ajack in reply to Poppy221]

Ah this is really good to know. She has massive problems with acid reflux doesn’t ever sleep properly because of it and only eats very early in the day. She has tried for acid - Fernitidine which caused bronchial spasm and made her lungs worse. She’s also tried Ranitidine and lanzoperone and she can’t tolerate either of them as well. Do you mind me asking what you take for it that’s stabilised the issue for you? I think one of the most recent tests she had for her lungs was DLCO before the pandemic and it has dropped 15% then from the last one but that’s a 2 or 3 years ago now. It’s really good to know about the fibrosis treatment as I’m not sure if she will have heard of that one but I don’t think they will put her on anything until they’ve done the lung function tests again. Really appreciate all the advice.