I’m home after 11 days in Acute Care with double pneumonia and dangerously low oxygen. That wasn’t fun, but worse is the diagnosis of Interstitial Lung Disease, fibrosis in both lungs and ‘ ground glass opacification’.
Just when I thought I had the last leg of this journey sorted - perfect little house, studio, lift, wonderful Support network - then Wham!
I have to have a Bronchoscopy once the pneumonia is 100% clear and this may determine whether it’s the RA itself that has caused the damage or the treatment. Either way, the outlook is pretty grim. I’m sad. I’m scared.
Has anyone got some positive responses for me, please! J
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Jora
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Bless you x just to say my heart goes out to you ❤️ And we care xxx
I’m really sorry to hear about those issues for you. I have no experience, wanted to express my support for what must be an awful diagnosis. Hope that further investigation provides a better outlook for you, cheers Deb
So sorry too hear this Jora, it never ends. I too have a problem with my chest and a chronic cough, which can only be RD or meds related as never smoked. Waiting for a respiratory clinic appointment, this is in a few weeks now. Nothing like you are going through though. Apart from recommending another forum on here with HealthUnlocked, called British Lung Foundation. I notice it seems to be very friendly, hopefully they maybe able to answer your concerns as specific to lung disorders. Just to say a big, but gentle hug. Please take lots of care. We are always here for you too. X
So sorry to read this. I've messaged someone I know from another RA group who's been diagnosed with it asking her if she wouldn't mind replying to you. She's not seen the message yet. Sending hugs. xx
So sorry to hear about your lung issues. I haven’t experienced anything like it yet but I hope after they’ve determined the precise cause they can give you some treatment and encouraging news. xx
Oh Jo, I'm pleased to hear you're now home safe but what a facer you have to come. I'm of no specific help I'm afraid but will of course be here for you as add-on support, you have my email, please use it whenever, or pm me, you know I'm a night owl so even if it's late you'll receive a response.
Hi Jora, Paula asked me if I can "speak"to you, I tried and when I posted a long post it didnt work.
I'm trying again, my name is Linda, I was diagnosed with Idiopathic Pulmonary Fibrosis in Sept 2015. It is an awful disease but, hopefully I can give you some positives. I'll try and post a bit at a time then if you have any questions just ask. X
What a blow, so sorry to hear this news. I know when I had pneumonia I felt extremely low for a long time after, so that can't be helping you cope with this news. I hope somehow you can channel your inner Pollyanna (assuming you were brought up with that repellantly positive little child?) to motivate yourself.
What I can say by way of positives is that you have always struck me as a hugely practical and pragmatic person. And one that knows how to ask questions and push to get answers. So you will find out what is best for you, and you will get the NHS to provide it for you. And in the meantime you have your perfect new house to find comfort in, with its lift (now what a good idea that was!) and other creature comforts. And thankfully you are an artist, not a marathon runner, so that will remain possible for you.
A horrible, horrible thing to happen to you, so huge sympathy. I don't really do virtual hugs, my style is more virtual tea, kleenex and cakes. So these I offer in trayloads.
I don't often post on here bit I do have a similar lung condition, and yes its a real slap in the face when you first get the diagnoses isn't it?
Someone else here mentioned the British Lung Foundation site and I would strongly advise you to join it, the BLF nurses are helpful and the forumites are very knowledgeable, they carried me through the darkest days when I was scared witless, in pain and felt very lost and alone. I learned so much about my own fibrotic condition even though it is a rare one and received a lot of good advice and encouragement, do take a look, it will make a big difference xx
Just want to add how sorry I am to hear this. It will be a long road, but I do hope that you get the help and support that you need. Take care, you're in my thoughts.x
So sorry to hear this Jora, my husband has been through similar problems with his lungs, investigating whether it's RA related or the medication, hold on and keep fighting! Sending hugs and positive thoughts your way.x
Thank you. I’m so sorry your husband has this too. Do please keep me updated on his progress. Apparently, twice as many men as women get this complication. That just means I’m doubly unlucky!
Thank you all for such wonderful messages of support. I really do feel upheld by your kindness. I’m now in touch with someone who has a similar complication so I hope this will be beneficial to us both.
I’ll guve an update when I’ve attended the Respiratory Clinic and I’ve had the dreaded Bronchoscopy.
Thank you all dear people and I wish you all as comfortable as possible. Jo x
Have you now had the bronchoscopy? I found your post informative. I have a lung condition of 17 years duration but it is still deteriorating. I was refused a bronchoscopy on the NHS on the grounds that I have never smoked and only serious lung disease is found in smokers (which I doubt). I was reluctant to pay for one not only because I did not have the money but because it was an investigation rather than a treatment.
I was not aware that the cause of a lung condition could be determined by a bronchoscopy. Two recent x-rays show bronchial thickening - in the exact place where I have had chest pains for 17 years. I've also had a cough for all of that time which has now become crackly with phlegm, and for the last five years breathing difficulty.
Just wanted to add my concerns and good wishes to those of others - what a trial you've had. I hope you're still able to find pleasure in your wonderful art and the support of friends. And hope you find an understanding and skilled respiratory team to look after you and maximise your health
I was taken in to ICU 2 years ago unconcious with double pneumonia. I was in for 4 weeks - like you my Sats were just 57% and I started fitting (my poor wife had to witness all of this). I was put into an induced coma and brought out of it 3 days later, they were concerned I’d be brain damaged as it took 2 ambulance crews 4 hours to get me into A&E initially. I wasn’t and further tests and X-Rays revealed possible ILD and a certain amount of the opaque glassiness you referred to. Also they found 10 emyemas around one lung (little sealed pockets of septic puss attached to the lung). The lady consultant surgeon explained that they had to be removed as any of the 10 bursting would equal sepsis but she could remove them keyhole by cutting and hoovering up each one to stop it getting into my bloodstream. It took another 2 weeks to get my Sats >90% and I was discharged. At my 3 month follow up my Sats we’re back to 99% and I was discharged from the Chest Clinic for good. It was all very drastic at the time, mostly to others as I was unconcious throughout. The suspected ILD seemed to disappear after all the surgery and I’ve been fine and healthy lung wise since for 2 years now - not sure if that’s the sort of hope you were looking for!
I too have Interstational Lung Disease. I was diagnosed after several trips to and from hospital with pneumonia even an ambulance run from the docs as oxygen was dangerously low which was embarrassing 😳. I have RA which affects every joint and have been on every medication and nothing sticks. After a whole ensemble of tests, I received almost the same diagnosis as yourself which put the wind right up me as Ive never smoked ! I have an oxygen machine at home and have portable ones should I need them. To be honest it put the fear of god in me when I heard the diagnosis Im not gonna lie especially when you read about it on Dr Google (never ever a good thing lol). Im on steriods which are more of a weight pain but are literally life savers during the winter months. Im not gonna lie it gets to me not being able to do certain things but once you sort your head around it its not all so scary. Ive just been for another CT scan and my lungs havent gotten any worse since two years ago so result. The respiratory nurses and docs are great and keep a close eye on me. Im sorry you've had to deal with this and I know firsthand how scary it feels but I just wanted to say its ok and youre not alone. Take care honey, chin up and keep strong xxx
so sorry 4yr news, jo, but there are some +ve messages 2u, try and hang onto those, and u may recall my own scare prob caused by MTX and my partial recovery thro singing [at home] and swimming tho u may not fancy that at prsent. sending you + ve thoughts n hugs. still envy u the lift. keep painting
Yes, the lift is a Godsend! I do remember your scare. I’m already in touch with an old friend, a singer teacher, who will help me all she can. I was walking through water ( sadly not on it) before this happened. I think I might panic with swimming, but it’s early days,
I’ve had to get rid of all painting toxins, and don’t have the energy to hold a brush yet. I’m impatient , but it’s early days.
Bless .... i can feel my west country origins coming out .... my dove, my dear... and more hints (sorry , programmed that way). xx Stay away from boggy places [like Malone Meadows, tho' that name has been adopted for a classy housing devt over here!]
Now, remember in your youth some judgmental person? A tutter and lip purser? Purse your lips and breathe in thru them slooowly and then a tad more. Hold it if u can, then , keeping lips pursed breathe out, also as slowly as u can. sorry 4 s/hand , fat fingrs here. try it n see, over weeks it strengthens lungs andcn't do harm. hugs
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