Has this happened to anyone else?

[Little-Lung-Lulu]

Way back in 2004 I was diagnosed with NSIP/UIP. I asked the Brompton to have another look at my CT scans which showed PF. I went into my past history of medication and found that I had been prescribed Nitrofuranoin a number of times. I mentioned this to the consultant and my correspondence would then come 'ILD thought Nitrofurantoin related.' I now also have quite severe Pulmonary Hypertension which is a co-morbidity of PF/IPF. Bottom line is I have received a letter from the consultant giving my medical background BUT now identifying me as UNCLASSIFIABLE ILD!!! (MDT(multi disciplinary team) April 2021 discussion). It would have been nice if it was mentioned or discussed with me. Feeling a bit lost. anyone out there had a similar experience?

[Katinka46]

That is so frustrating for you. In a piece of writing I did for a bonkers professor in Sheffield I posited the idea of a future where patients could automatically access all their records on line and that patients must be invited to attend MDT meetings when their cases are discussed. Future generations will be horrified about how their parents were kept in the dark. Makes me mad 😡 Hey ho…

Good luck

Kate xx

[Little-Lung-Lulu in reply to Katinka46]

Thanks for the reply Katinka46. I am in the process of compiling a letter to The Brompton to find our why after all these years my lung disease is now Unclassifiable.

[Dedalus]

I can't help with this, but the only time I took Nitrofurantoin I had a very bad reaction to it, especially with my breathing. Good luck going forward and I hope you get some answers.

[Kcn3]

You could contact the PALS team at the Brompton with your concerns over how you have been treated. They have to look into your valid worries.

My daughter had a different rare pulmonary fibrosis (PPFE) and never found the Brompton supportive and very difficult to get hold of any 1 as always 1 only email contact and sometimes got replies sometimes weeks sometime never. My daughter was referred to the Brompton and her 1st appt was Feb 2019. That day lots of tests and were happy with them although told there was no treatment for her disease, which was heartbreaking to hear.

Sadly Covid times cancelled her appts after that as the hospital priorty was covid patients for over a year which no help for her, was no good.

Ask if UCL hospital in London are doing any research that could help you and could you see someone there and ask for a 2nd opinion.

Xxx

[Little-Lung-Lulu in reply to Kcn3]

Well I hadn't thought about PALS. Thanks for that advise. I am waiting for a reply from one of the Specialist Lung nurses at the Brompton who normally pass my emails on to the correct Consultant and reply within 3 days. It's quite sad that research funding for lung diseases is not well supported. Perhaps with Covid that might change. There is much more support for the heart and cancer charities. I feel as though I am in limbo not having a diagnosis. If I don't get a reply by Wednesday I will contact PALS. Thanks again Kcn3.

[Kcn3]

Guessing your contact could be Charlotte Hogben?More often than not we would get an auto reply that she was not there til the following week.

Yes I agree and am sure a lot of other lung sufferers on this site are disgusted by the lack of research for lung disease.

Money has been put towards research for long Covid and maybe it will touch on areas lung patients need. But the uk is too slow . Just because lung disease isnt as common as other diseases or cancers shouldn't mean that those patients suffer.

The USA is way ahead of the UK. I wish NICE would take more notice of the US findings and not wait for more years and years worth of proof and then say oh no those drugs are too expensive so we won't license their use.

Yes the American's they pay for their health care , but boy do they get the drugs they need.

I have linked with a dr in UCL to fundraise to aid research for PPFE which my daughter heartbreakingly had.

I would definitely ask for a 2nd opinion there .

Good luck and keep us posted how things are xxx

[Little-Lung-Lulu in reply to Kcn3]

Yes Kcn3 the American medical fraternity have a proactive attitude. Nice is reactive because of money constraints and red tape, 'The British Lung Foundation' as it was known has always been the Cinderella of the charities.I take my hat off to you for fundraising for PPFE. I am sure your beautiful daughter will be cheering her Dad on. I belong to a group called The Pulmonary Fibrosis Trust and they do some wonderful fundraising.

Wishing you well and will keep you posted. x

[Kcn3 in reply to Little-Lung-Lulu]

Bit Confused by 'my beautiful daughter will be cheering her dad on'? Xxx

[Little-Lung-Lulu in reply to Kcn3]

Hello, My apologies Kcn3 if I spoke out of turn. The Pulmonary Fibrosis UK group that I belong to has many people joining as well as passing away. Most of the time the cause is unknown as the fibrosis is Idiopathic. For those left behind there is heartbreak, despair and anger which no one will understand unless they go through it themselves. You mentioned that you linked with a Dr at UCL to fundraise to aid research for PPFE and I thought that your daughter would like that idea. It wasn't long ago when we were fighting to have oxygen prescribed. Then we had a battle to have anti fibrotic drugs prescribed for the scarring of the lungs. I think making a noise about these 'rare diseases', which are not as rare as they say is a good thing as hopefully more funds will go towards research. xx

[Kcn3 in reply to Little-Lung-Lulu]

Think I understand what you meant now. I realise in my profile I havent said who I am. I'm Karen and I am/was her mum , not her dad. We have been divorced for around 10years and so I looked after her , the good, the bad, the frustration , the laughs, the tears, the anxiety and all the side effects.

Totally agree with your comment about the pain with those left behind.

Even though she had a fibrosis with a name . It is rare and not much known about it in the uk.

The radiologist Dr that I've linked with says that so many Drs and consultants are just not recognising the condition. So its likely that a lot of patients with 'IPF ' do have a specific fibrosis but Drs are just not searching hard enough for answers .

To me it feels like when you go to a GP and they just say 'oh you've got a virus'.

I think they should ask around the world for help to get a definite answer for patients.

I have everything crossed for you that you have the strength to push and get a definite diagnosis and appropriate xxx

[Caspiana]

Hello Lulu, 😊

I have a friend who is in hospital at the moment in Leeds. I am very confused as to why doctors in the U.K. (from what I have heard) are so reluctant to allow patients full accessibility to their own tests and scans. Even after blood tests and scans the information given to my friend was next to zero, so I said ask them for a copy of the blood test results. He said , "it doesn't work that way here". Why not ? Why are they afraid"? It is unfortunate that patients like yourself are left in the dark. And it really ought to change. Without facts and figures shared with the patients how can anyone be sure and feel safe with the diagnosis and treatment afterwards? How can patients advocate for themselves with no information? Or is that maybe the point? I'm sorry for your situation Lulu. I hope things turn out okay for you. xx 🦋🌿🦋

[Little-Lung-Lulu in reply to Caspiana]

Hello Caspiana. Yes. I find that I am able to get copies of my lung function tests and don't leave until I have been handed a copy. It can also depend on the hospital and their administration staff. What I struggle to get my head around is when the Consultants hold their MDT(Multi Disciplinary Team) discussions the patient is not informed if the diagnosis is changed or how they have come to their conclusion of 'unclassifiable' as in my case after so many years of PF. xx

[Caspiana in reply to Little-Lung-Lulu]

Very strange isn't it? I would feel quite disconcerted if they suddenly came at with with a different diagnosis or even more confusing "unclassifiable". Have you been able to ask them? You definitely need an explanation. And what of the treatment you have received this far (if any?). I would be wondering if they treated me for the wrong disease. I'm sorry this happened to you Lulu. 😒 They should have informed you and discussed it. By the way I had a friend who was named Lulu. We were best friends in kindergarten. Have a good day. xx ❤️