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Not good.

Mavary profile image

Hi guys.

I’m afraid its not good news. I’ve had confirmed what I thought. I spoke to the Dr this afternoon an he told me I have got Pulmonary Fibrosis. It’s almost certainly caused by the pneumonia and Aspergillosis I had nearly four years ago. I found out by looking at my discharge sheet from hospital that I had Interstitial scarring. I knew exactly when I read it but nobody was telling me anything. I asked the Dr outright today. Have I got Pulmonary Fibrosis. He told me I have. I know because I lost my Husband with IPF eight years ago. I looked into it because I wanted to know what it was all about and any treatment he might get.unfortunately at the time Perfenidone had first come out but my Husband wasn’t allowed it. . I don’t know why they don’t want people to know. Things need to be put in order just in case. It left me in limbo for a long time. I even mentioned it to the nurse and she said she saw my scan and could see nothing to worry about. I could go on for years but who knows.

136 Replies

It is so frustrating when we don’t get clear answers. And it really is time that doctors accepted that patients will be well informed. In your case because you nursed your husband through the condition you are bound to be knowledgeable. I am sorry that you have this diagnosis and I hope you get some appropriate medication soon.

All the best

K xx

Mavary profile image
Mavary in reply to Katinka46

Thank you Katinka. There’s nothing they can do at the moment.

I really feel for you Mavary. Having things kept from us is beyond frustrating. Sending you heartfelt good wishes and hope for the future. Thinking of you. Xxxx

Mavary profile image
Mavary in reply to sassy59

Thank you Sassy. Im the sort of person that likes to know things. Especially things as major as this. Xxxxx

sassy59 profile image
sassy59 in reply to Mavary

Yes, me too xxxx💕

Mavary profile image
Mavary in reply to sassy59

Xxx❣️

MoyB profile image
MoyB in reply to Mavary

So do I! I can deal with anything as long as I know what it is. I can't stand it when information is kept from us.

I hope you keep as well as possible for a good long time.

xx Moy

Mavary profile image
Mavary in reply to MoyB

Thanks! Moy. I hope we both don’t get any worse. To be honest I don’t know how they could think they could keep it from me. I lost my Husband from the even worse one. I’m obviously going to know about it. Xx

MoyB profile image
MoyB in reply to Mavary

You'd hope there might be some joined up thinking , but I do wonder sometimes about the training. There seems to be so much focus on the actual condition that the medics seem to forget they have an intelligent human being in front of them.

It does go from one extreme to the other, though. I had to see an ENT specialist who blithely told me I could have a tumour near the ear or the base of my skull or it could be cancer. The information was just thrown at me with no explanations. Thankfully, I'd done my research well before we met and already knew about these things and had completely dismissed them, but he still insisted I should have an MRI to rule them out which, of course was a good thing. When we came out of the appointment, I said to my husband that I would have been frightened to death if I hadn't already had the benefit of the internet! Fortunately, the MRI confirmed there was no tumour anywhere or cancer.

It's one thing being told what the possibilities are, but quite another having them tossed into the conversation as though your being asked if you'd like sugar in your tea.

Some of these people just don't seem to get it right, do they?

xx Moy

Mavary profile image
Mavary in reply to MoyB

You are so right Moy. We are not treated as individuals. It’s the way they are trained. I feel sorry for that poor Dr I spoke to on Friday. He’s not my usual one but I just thought I am going to ask. It’s up to us to put things to them isn't it. I’ve had a couple of either nurse or Fridays Dr ask if I’ve had medical training. Well No! I’ve got the internet and I’ve learned by experience. You don’t get to my age without learning a lot. I’m not saying I know it all. But I do know some things. I’m not the sillly little old lady that sits in a chair dribbling and just takes what’s given. I look into things and see what’s best for me. You are obviously a lady of my own thinking. Xx

MoyB profile image
MoyB in reply to Mavary

I am indeed! Glad to hear you are proactive too.xx Moy

Aingeful profile image
Aingeful in reply to Mavary

Mavary,I was once asked if I was a midwife after asking the Obstetrician questions about my pregnancy. Some doctors need a slap round the head and a reminder that they aren't God!!

Mavary profile image
Mavary in reply to Aingeful

Ha ha! 😹 I’m not tall enough to slap the Dr I saw on the head. I’m four foot 10 4 foot eleven. and he was about six foot. I know what you mean though. I don’t think they realise we have computers. I’m always looking things up and it doesn’t mean medical. I look up words that come into my head or I’ll look where somewhere is. If someone is on holiday I like to look at pictures of where they are going. I suppose I’ve just got a curious mind.

When you see someone you love that is really sick you want to know all about it and if they are given the right treatment or if there’s anything new out. X

Aingeful profile image
Aingeful in reply to Mavary

I do that too.Anything new to me, I will Google.

Mavary profile image
Mavary in reply to Aingeful

But we’re not supposed to know. When I was in hospital four years ago the Dr had a look at my fingers. I said no I haven’t got pulmonary fibrosis. He said the trouble is you know too much. I said I ought to. My Husband had IPF. See! You are not supposed to know. If it was my two Sisters they wouldn’t have a clue and would listen to what the Drs say. Now we have the internet we can choose and if we don't think somethings right we tell them. It’s almost like we are a threat to them if we know something. X

Catgirl1976 profile image
Catgirl1976 in reply to sassy59

Thing is I would rather be told the truth than not even if it hurts.

A couple of years ago one of my friends from my old job said how the bullies had been promoted and rewarded and I had become ever so upset over it and She said she had felt awful for having said that and I said no need to feel awful I would rather be told the truth even if it hurts than have things kept from me and I would have found out sooner or later anyway.

Mavary profile image
Mavary in reply to Catgirl1976

Me too! I like to know things then I can deal with it. I don’t like being surprised. I wasn’t really surprised in this instance as I knew the signs.

Catgirl1976 profile image
Catgirl1976 in reply to Mavary

Still it's hard to take though when you getting told officially somethings wrong.

Mavary profile image
Mavary in reply to Catgirl1976

It was just a bit worrying the first night. Nothing has changed though. I was pretty sure I had it anyway. It’s not worth worrying about unless I get really bad. Then I will be doing more about it. X

I'm glad that you have got to know the truth about your diagnosis even though you have had to push for it but I am so sorry that it is as you suspected. Sending you a hug and my best wishes, Carole xx

Mavary profile image
Mavary in reply to CDPO16

Thank you Carole. I knew in my heart a while ago so it’s not too much of a shock.

Mavary profile image
Mavary in reply to Mavary

Xxx

CDPO16 profile image
CDPO16 in reply to Mavary

Not good to have the confirmation all the same. xxx

Mavary profile image
Mavary in reply to CDPO16

I would have preferred him to say no! Xxxx

Catgirl1976 profile image
Catgirl1976 in reply to Mavary

I think you instinctively know when somethings seriously wrong don't you?

Mavary profile image
Mavary in reply to Catgirl1976

I know because of past experience. I was the one who looked it all up. Had I been naive like my Husband I would know nothing now. I’ve got two Sisters that wouldn’t know how to look anything up. What I say is to be warned is to be forearmed. X

I feel for you, and the delay before your full awful diagnosis. Well done for pushing for the full picture, wish it was better than you suspected. Hope you can now get best treatment. Very best wishes, keep fighting, Jean xx

Mavary profile image
Mavary in reply to Morrison10

Thank you Jean. I never thought I would ever have to share similar news as my husband had on here. I don’t worry about me. I worry more for my Children. Xxx

At least u know now what yr dealing with.i hope u can have a gd consultant u feel u can trust.keep a pad handy so any questions,u can jot down.i find we have to be direct at times to get answers.wishing u well xxxxxxxxx

Mavary profile image
Mavary in reply to Patk1

Thank you. I’ll remember that when I see him again. I was seen for the first couple of years after I had pneumonia and the Consultant said I’ll see you next year. I thought it odd why he kept wanting me to see him. Well anyway Covid got in the way and I didn’t go back.xxxxx

Mavary, I was diagnosed with IPF under a year ago. Like you, I had a couple of family members (father and cousin, from my father's side of the family) lost to PF, so I have experience of the route fibrosis can take.

Both of those relatives were unwell prior to pirfenidone and nintedanib.

My PF has no known cause, so classified as idiopathic and I have started on Nintedanib, which I am tolerating very well, so far.

One thing my Consultant is at great pains to point out is not all PF is progressive, and not all progressive PF progresses rapidly. She states she has patients with PF and IPF in clinic who are very well, after 15 years. I try to keep that in mind and get on with my life.

It's a horrid, horrid diagnosis - especially when you understand how things can go.

Yes, I agree it makes sense to have things in order, but that stands for everyone, including those in the rudest of health. None of us know what tomorrow will bring.

I would encourage you to focus on the positives. Your condition is now known. You will be under the care of knowledgeable people, and hopefully have avenues to have questions answered.

I have several contact points for my clinic - Consultant's secretary, nurse line for queries like symptoms, feeling a bit off, test results and just "stuff", and the specialist pharmacists, for help and support relating to medications.

Take it steady Mavary. Knowing in yourself something is adrift and having it confirmed are different places.

Mavary profile image
Mavary in reply to MMaud

Thank you for your reply. I’m sorry you have IPF. As you say we have both been on the other side of that. Unfortunately my Dr said it has spread slightly to the wall of my lungs. I must have had it nearly four years so that’s not too bad. The trouble is it’s unpredictable and you don’t know how quick things will escalate. I’m glad your Nintedaneb. I’ve always thought it was Nintenedab. Well that’s something I’ve learned. Anyway I’m glad it’s giving you some relief. The times I’ve hoped and prayed for a cure I can’t count. Well they’re pretty sure mine was caused by the pneumonia and Aspergillosis. So it’s PF. Not IPF. It’s a so and so anyway.

You’re quite right nobody knows what tomorrow will bring. It’s a hard world sometimes. I’ve loved clothes. I’ve been turning out cupboards for a long time because as I said I’ve had my suspicions for a while. I don’t want my Children to have too much to do and I want to do it while I still can. I’ve been finding it difficult for a little while to do things. That’s why I contacted the Dr. I was thinking my back was making me breathless. I’ve had seven fractures in it. So as you see I’m just falling to pieces. Funny enough. My Husband had two spinal fractures too.

mylungshateme profile image
mylungshateme in reply to Mavary

I'm so sorry for your diagnosis, however well done for getting your voice heard and getting the diagnosis. It's not right how much we have to fight and find the inner strength to be our very best advocate when feeling unwell and unsure of what's around the corner (I know no one knows what's around the corner and tomorrow isn't promised to anyone, but it doesn't make it any easier).

You have some good insight from previous but also try to remember no 2 people are the same. However I am no expert in your condition so apologies if I'm wrong. Sending positive hugs and strength. X🙂🌻

Mavary profile image
Mavary in reply to mylungshateme

Thank you for your post. I do like to be I

In the picture then you know what you’re dealing with and possibly do something to fight it.

Mavary profile image
Mavary in reply to mylungshateme

You were spot on so don’t worry.

MMaud profile image
MMaud in reply to Mavary

My route to diagnosis was very different to yours. I was/am asymptomatic and taking part in a research study relating to cardiac health. During that process I had various tests and imaging, including a high resolution CT; focusing on my heart. The CT report reported lung changes consistent with pulmonary fibrosis, so the words were out there right up front.

Of course, I had a further focused CT confirmed the observations from the first. Thereafter followed various interrogations and a lung function test, done in my car, in lockdown. All in all, a totally bizarre set of circumstances.

Like you, I have a historic pneumonia, but two pulmonary consultants and a cardiac radiologist have all poo-hood that as a primary source of the changes. Apparently my changes would be different from that.

Right now, I am still very well with no breathlessness, although a cough I have had for what seems like forever may in fact by PF related. Or it might not.

So, for me, I'm very much getting on with my life, and planning positively for the future.

I wen through a handful of weeks where my thoughts of the future were couched by "if I'm around to see that", but I have banished those thoughts now.

We have one life. We won't get another go if we look back and find we haven't made the most of it, so as before, I'm trying to live my best life.

Please try not to focus on the dark thoughts. Of course you will have them. I have had them, and I think that's a very natural thing in the circumstances - especially for us.

Even if the time I have left transpires to be shorter than my masterplan, at least I'll know I've packed in what I can.

In your shoes, I would be asking the medics to tell you why you have fibrosis, and ask for other conditions, such as environmental factors, sarcoidosis, scleroderma and a few others. make them do their jobs, and ask them to explain what options you have for treatments and maintenance.

Keep fighting the good fight.

Mavary profile image
Mavary in reply to MMaud

They did the tests while I was in for pneumonia. That’s all I thought they were testing me for. It was the finger checking that had me suspicious even then. When I said to the Dr I haven’t got Pulmonary fibrosis. That was his opening to say well I’m sorry but you have. But no I’m four years on. I was told my fibrosis was almost certainly caused by the pneumonia and Aspergillosis. My breathing has got worse in the last few weeks. I was just changing my top. I put on a sweatshirt which was too hot. Then I put a long sleeved cotton top on but it had three quarter sleeves. Not warm enough for me. So I got another long sleeved cotton top out and put that on. Just right but I was so breathless I’ve had to sit down for a few minutes. I haven’t seen a Consultant for two or three years now. He saw me two years running and I was fine then. Couldnt understand why he was having me back when there were more sick people than I was. Then we had Covid and although he said he wanted to see me the following year it didn’t happen and like I said I haven’t been seen since apart from I went into hospital last year with breathlessness and they said it’s not your lungs it’s your back you have four more fractures. I had a scan last year and the Dr told me yesterday that the fibrosis has now gone onto the lung wall. Nobody told me anything nearly four years ago or last year. It only came out yesterday because I asked him outright. Do I have Pulmonary Fibrosis to which he replied yes you do. I think that is terrible not telling you things. Funny thing is. I don’t have a cough.

mylungshateme profile image
mylungshateme in reply to MMaud

Worded very well couldn't have put it better myself. X🙂

Izb1 profile image
Izb1 in reply to MMaud

This is a really positive reply MMaud x

cofdrop-UK profile image
cofdrop-UK in reply to MMaud

Excellent positive reply cxx

I don’t understand the attitude in the U.K. that patients aren’t allowed to know what’s wrong with us. I’m sorry you had this diagnosis but more sorry that it was withheld from you for so long. Sending you lots of sheepy hugs 🐑🐑🐑🐑🐑

Thank you ! I very much appreciate all the replies I’ve had. It’s amazing how they can sleep at night knowing they haven’t told you. I think they’re way of thinking is give them as much time not knowing so they can live a happy life until they have to know. I’d already had suspicions which were more or less confirmed when I read my discharge sheet. It was just confirmed finally today. Anyway you can give me as many sheepy hugs as you like. I love animals. 🐑

My sheep will send you lots of sheepy hugs 🐑🐑🐑🐑🐑

Thank you! Xxx

Mavary profile image
Mavary in reply to Mavary

🐑 🐑 🐑 🐑 🐑. I got them all thank you🤣. Xxx

Damon1864 profile image
Damon1864Volunteer

So sorry to hear about your diagnosis, but you need to know all the facts about treatment and medication. Hope you have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

Mavary profile image
Mavary in reply to Damon1864

Thank you. I did know quite a bit about it but that was eight years ago when I had my Husband I’ll with IPF. I’ll have to look it up again and see if there’s any more new information.

Hi, I'm new here, sorry to hear your diagnosis. I can understand your worry after nursing your husband but like MMaud says, everyone is different and with further consultations you will hopefully be better informed. I was also diagnosed with fibrosis and pneumonitis October last year after a VATS biopsy and it did come as a shock even though I knew something was wrong. Presently I've been commenced on rituximab infusions, had my first course in February with the next being in August. I hope you get some more answers soon

Mavary profile image
Mavary in reply to CarolMcl

Thank you. Me too. I haven’t seen a Consultant for over two years.. I think as long as you’re trundling along ok they’re going to leave me too it. I’m having a blood test on the 21st April to see if it’s affecting my heart as I’m getting breathless when I do things. So it’s wait and see. I’m sorry you’ve been diagnosed with fibrosis and pneumonitis. It’s good to know there is treatment out there.

Sorry about your diagnosis Malvary

Mavary profile image
Mavary in reply to Andbreath

Thank you.

hi Mavery Its the same here in Australia as far as not telling you things. I had to go and see my lung specialist to renew my oxygen script but she was away and I had to see a registrar instead and he says oh so you have Heart Failure I said No not that i know of// There was also something else that was mentioned as well. It makes you feel like an idiot. i was furious and let them know it. This is my body not theirs and I expect to be told everything especially when its as dangerous as it is. I do find it depends on the individual Dr though as I know some who are great in telling you everything. Hope things go well for you for a long time to come. I was diagnosed with Emphysema in the year 2000 I didnt go to hospital till 2015 and it was then I was put on oxygen. I am still doing ok and live life as best as I can. I had a friend who was diagnosed about 2 weeks apart from me and we were both told give up smoking or you will be dead in 5 years. Well I did and she didnt and it was 5 years and a week to the day that she died. So when kids at the shops etc stare at my oxygen tubing in my nose and ask whats that for I tell them thats because i was silly and smoked so I feel I may as well try and get some good out of this horrible disease. Take care and stay well.Danielle

Thank you Danielle. Mine is probably caused by smoking too. I didn’t smoke much at all and not for long. but my Husband did and it was when we never knew the horrors of smoking. My Husband smoked in the house. In the car and everywhere. So I never stood much chance of getting away with it. If only we had the information we have now then. I had pneumonia and TB when I was about four and was very ill. I had pneumonia when I was about 9.years old then I had pneumonia again in 2018 and it was followed by Aspergillosis. So I haven’t had much chance of avoiding something. Im getting a blood test to see if my heart is failing. It’s what Pulmonary Fibrosis can do. It’s a scary disease that I’m going to have to deal with.

Well at least I had my suspicions so it wasn’t quite the shock it could have been. It does make you cross that they don’t tell you but I suppose a lot of people just couldn’t take it. I think my Husbands Consultant did it in the wrong way. He was quite excited when all of a sudden he said he thought he knew what my Husband had . He said he thought my Husband had IPF. I asked what that was and he replied oh you don’t need to worry about that. I went home after and had a shock. I didn’t tell my Husband for a while. I was in denial. This is how I know things about it.

I’m sorry about your friend, life is like Russian Roulette. It’s all a matter of chance.

Having PF can sometimes go for years. It is a death sentence long term but hopefully not in the short term.

I hope your heart doesn’t give you too much trouble.

Thank you for taking the tie to help. Xx

O2Trees profile image
O2Trees in reply to Mavary

"he replied oh you don’t need to worry about that" . . . that makes me see red mist! They should never say anything like that. So patronising, condescending and mistaken. If you've asked, then you want to know. Im sorry you're going through all this and send you love and strength to deal with it. xxx

Mavary profile image
Mavary in reply to O2Trees

To be honest I think he was shocked that I said I was going to look it up. He doesn’t expect the older generation to be on computers. He should have told us there and then because it was a shock to actually read what IPF was. It’s been really lovely to see some of the friends that were around and helped us so much when Mike was ill. I never ever thought I would have a similar illness. I felt then we were more or less on our own apart from our friends and family and now they’re doing it too me. I almost demanded I go for the heart scan I’m supposed to go for. He said he will do a blood test to see how my heart is. If there’s a problem he will send me. I don’t like to go above their heads but it’s very tempting to phone the lung Consultants Secretary. My Consultant is lovely and I think he would see me. They told me they would book me in last year for a heart scan when I was in hospital. I’ve heard nothing. I think I’m going to have to stamp and scream. I know how tied the Drs Hands are but I think this is important. Best wishes to you. Xxxx

Good morning Marvary or maybe not so good . Sorry you had to wait to find out what you thought was the problem . Now you know you can start arranging your life style round your need, cocentrate on avoiding infections and live the best life you can. Do take care will be thinking of you.xx

Mavary profile image
Mavary in reply to katieoxo60

Thank you Katy. You are so kind. I hope life is treating you well at the moment. Xxx

katieoxo60 profile image
katieoxo60 in reply to Mavary

I am like you in a quandry over treatment for latest BP flare, hopefully it will settle down now I am taking more tablets. The side effects of the drugs are worse than the illness. I manage to get my shopping ect delivered. Go to the neighbours for a chat and my hairdresser is only round the corner like the post box. Drs is on the phone so far I manage but only by being flexible and altering the way I do things . Its about changing our lifestyles really isn't it.? The sun is out so enjoy while we can. xx

Mavary profile image
Mavary in reply to katieoxo60

I quite agree Katie. My life has changed a lot. I’ve now got a cleaner. I feel I could do it myself but know I can’t. I’ve also got the laundry ironing service doing my ironing. I refuse to have ready meals as they are not freshly cooked so I do my own. I found washing up was murder on my back so I bought myself a little dishwasher. It helps so much. My Son gets my shopping so that’s not a problem. I’ve got my little car that I can take to the car park and pop to a couple of shops. I’ve got to take my shopping trolley to carry my handbag and goods because I can’t carry anything because of my back. My Dr offered me more help yesterday but I refused it for the moment. It may come sometime but until then I’ll fight on. Hope your BP will settle down soon. Xxx

katieoxo60 profile image
katieoxo60 in reply to Mavary

Like you I still do my own cooking, just different meals that cook in, the steamer, slow cooker or oven. I too have trouble with carrying due to dodgy joints in my hands shoulders and trouble walking with a stick since my knee gave up . Of course our lung problems don't help due to stamina levels either do they . Bye for now nice to chat I have workman doing jobs for me this weekend.

Mavary profile image
Mavary in reply to katieoxo60

👍XX

Hello Mavary. I'm sorry to hear your news. I wish it were different. 😔 I am not sure why doctors aren't just direct with patients. It's a bit different here , doctors are very direct, sometimes that is not so good but at least we know what we are up against. I hope now though you will get all the care and support you need. Please know we are all thinking of you and are here for you. Much love.

Cas xx 🌿

Mavary profile image
Mavary in reply to Caspiana

Thank you Caspiana

Sending you gentle hugs and support.Keeping you in my thoughts and heart -remember you have a huge support net work here with your dodgy lung buddies.

Mavary profile image
Mavary in reply to Cloudancer

Thank you for your kind thoughts.

So sorry to hear of your diagnoses. I wish medical profession will trust us with sharing the information. Wishing you maintain the health you have for as long as possible and pray you get all the support and help you need as you go through this journey.

Mavary profile image
Mavary in reply to BreatheasyBe

Thank you I’m sure they will share more with me now. I’ll make sure about it anyway.

I'm so sorry to hear your news it really is too bad that we aren't given all the information we should have it seems unless you are proactive with your health care you get nowhere. Sending all good wishes for the future and hope you get the medication and support you need xx

Mavary profile image
Mavary in reply to Cak3y50

Thank you. I think maybe part of me just didn’t want it said. What you don’t know can’t hurt you. But the other part was waiting for the opportunity to ask. My opportunity came yesterday. I’ve had this now for getting on four years. I’m still here after not knowing about it so I’ve got to get on with my life now as best as I can.

Thank you for your kind thoughts. Xx

Just want to send you love and gentle hugs, take care x❤️🌷🌺🌼

Mavary profile image
Mavary in reply to Shirleyj

Aww! Thank you for your kind thoughts. Xx

I can’t add anything to the replies you’ve had except to agree that knowledge gives you the power to make your own decisions, even if it’s about peripheral things and not about the medical stuff. Your clothes for example. I too love clothes and am always a little embarrassed when I look in the wardrobe. I have more things than I have times to wear them but I enjoy having them.

Mavary profile image
Mavary in reply to teenieleek

I think we are two of a kind. 😂

So sorry to hear your news Mavary and terrible that the doctors can withhold this information from you, I would have been furious. I dont have any advice for you as I dont know enough about the disease but would push for an appointment with the consultant to ask if there is any medication that would be beneficial to you at this moment. Will be thinking of you, take good care. Irene x

Mavary profile image
Mavary in reply to Izb1

I did ask to see them bit you’ve got to get through the first line of defence. They’re a pretty stubborn lot that have been told they’re rules.

Izb1 profile image
Izb1 in reply to Mavary

Phone the hospital and ask to speak with your consultants secretary and explain the situation to her and that you need an appointment , they can organise this, I know because I have done this myself x

Mavary profile image
Mavary in reply to Izb1

I could do that but at this stage I would just be wasting their time. There’s nothing they can do to stop my lungs scarring. Not until I get really bad. Then there is Nintenadab and Perfenidone but that’s when it gets really bad. X

Izb1 profile image
Izb1 in reply to Mavary

Well lets hope that you wont need these for a long time yet Mavary. It sounds like you have a good consultant which must help x

Mavary profile image
Mavary in reply to Izb1

I haven’t seen him for two r three years now. So he wouldn’t know.

Morning Mavary. Sorry to hear of your diagnosis though you suspected it. I’ve found you have to be direct with doctors , health care people as they can waffle around Hopefully your consultant will be a good one and helpful with your needs. Take care friend xx Anita

Mavary profile image
Mavary in reply to watergazer

Hi Anita. My Consultant is lovely. He is really kind and thoughtful. This will be the third year I haven’t seen him. He obviously know what’s wrong with me as he’s one of them that has checked my fingers. I’m afraid I’m just another number in a big sea of people. I’m sure there’s many more in the same position. I’ve had to learn to stand up for myself as I’ve got older. In this day and age you’ve got to be strong to stand up to people. Xxx

Hi Mavary. So sorry to hear of this awful diagnosis. I hope you can take away something hopeful from MMaud's post here. I hope the new medication will help and that you are coping as well as can be expected. I will look forward to reading your posts here so keep them coming. Thinking of you x

Mavary profile image
Mavary in reply to JJ_7

Thank you JJ. I’m sure I’ll be back on at some time. X

Hi Mavery. Really sorry to hear of your diagnosis and that it took so long to be told definitely even though you had suspicions. After reading all the above posts , which are all so positive, hopefully they have helped to give you a good positive approach to your diagnosis. I wish you all the very best, take care xxx

Mavary profile image
Mavary in reply to HollyBoyd

Thank you. I’m a bit overwhelmed at the response I’ve had. I’m very grateful for all the information.

Hi Mavary

I was diagnosed with PF in 2007 after realising I could not dance without getting out of breath and feeling very fatigued.

2006 I was diagnosed with Mixed Connective Tissue Disease (lupus) but unfortunately it had started to damage my lung. It was only when I went away for Easter to a large christian gathering and went to a dance workshop that I started to be breathless and when walking around the site. Along with the breathless I was now getting pain in my chest so when I return home I rang the hospital to get an appointment with my consultant or one of his team.

I was admitted to hospital for test but the next day when the Rheumatologist came on the ward he told me without examining me that the base of my lungs are damaged and I need to start some treatment immediately. The treatment was Steroids and Methotrexate, which changed over the years to various different drugs.

2013 I asked if I would be a good candidate for lung transplant. I was told yes but I wasn't ready for that until a few years later when I said I was ready to consider it. Unfortunately I was told by my Pulmonologist that he had asked and was told because I suffer from gastric reflux I could not be considered. I also asked if I could go on ambulatory oxygen and after testing I was told I need 4 Litres Per Minute.

It did take a while to feel comfortable going out with the oxygen and then I though i'm still getting very breathless so was tested again and this time I was told that 6 LPM would be best

I have been using 6 LPM for a number of years now.

Please do not fret about being diagnosed with PF, it's your attitude that will help now. Don't read about it unless you see an article about some new treatment. I currently have an infusion of Rituximab to slow down the inflammation.

Hope this helps you to see you can live a long and fulfilling live, I still travel, just the insurance that's a problem. This year I will be going on yet another cruise with my family. Because of covid I don't mix and go out as much as before.

Take care

God bless x🙏🏽

Mavary profile image
Mavary in reply to Maureenpearl

Hi Maureenpearl Thank you for your text. It was steroids for the Aspergillosis that finished off my bones. I believe I’m still early stages of PF. At least I hope I am. I’ve not been offered anything at all. Only help to come in if I need it. I must admit that because of my back I probably do. But I’m independent and like to cook my own meals. While I’m cooking healthily I’m keeping my strength up.

I have now been told that my lung lining is now starting to scar.

I’m so sorry you have the same problem it’s no fun is it? I’m afraid it’s too late not to look at things. I studied Pulmonary Fibrosis quite a bit when my Husband was ill. I was hoping and praying they had some new miracle cure. I know there are drugs now to help prolong your life but all the years I’ve known about it they’ve never found a cure. There was something about ten years ago that they had found a cure in mice. But it’s never been produced for humans. I wonder why?

Why does gastric reflux affect having a lung transplant I wonder. I suffer badly with it. So there’s no chance for me. I would imagine I’m too old anyway. I don’t know as I would want to go through that.

Oh you are so lucky to be able to go on cruises. I’ve been on quite a few and it’s the best holiday ever. I used to go with my Husband. After I lost him my Son took me on a couple. I hope you do go. You can tell me all about it when you come back. X

Mavary profile image
Mavary in reply to Mavary

I just think I need a new body. 😂

Maureenpearl profile image
Maureenpearl in reply to Mavary

Me too, I’m waiting for the manifestation of my miracle for new lungs. 🙏🏽

Gastric reflux causes acid to enter your lungs therefore burning the lining. You can have silent reflux when you’re sleeping, it causes you to wake up coughing. It wouldn’t be a good idea to give us new lungs for them to get damaged by acid.

What we need is good treatment for the acid reflux. X

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Mavary in reply to Maureenpearl

I definitely need that. I’ve got acid indigestion tonight. I don’t take my Omeprazole until bedtime usually but I think I’m going to be taking it early tonight. I sit up on three pillows when I have heartburn. I’m sat up tall now hoping it will go. The trouble is my stomach is up under my chest so it’s getting crushed a lot of the time. X

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Mavary in reply to Mavary

I need a manifestation of all of me now. 😂😹

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Maureenpearl in reply to Mavary

I have an adjustable bed, it's two single beds put together to make a super kingsize. I adjust my side to an upright position nightly and my husband sleeps flat.

Omeprazole I though should be taken at least one hour before meals so it lines your stomach. I have been given liquid antacid to take as well so I keep it at the side of my bed and just swig it straight from the bottle if I need to.

Try eating small portions when you have your meals and don't eat late at nights. I usually eat between 5:30 and 6pm, if I go out for a meal I only have one course, sometimes just the starter as my main course.

Take care x

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Mavary in reply to Maureenpearl

I’m on my own so I did think about getting an adjustable bed but I’ve not long bought the one I’ve got. The one I’ve got is very comfortable at the moment.

So sorry that you had this bad news. I hope the nurse is right and that you will go on for years. Hoping you will soon be over the shock of confirmation and that from now on the medical staff will be straight with you. Very best wishes, Chris xxx

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Mavary in reply to Alberta56

I hope so. Thank you Chris.

Sorry to hear you've had such bad news; sending very gentle hugs X

Mavary profile image
Mavary in reply to Rubble86

Thank you Robbie.

That's not good. I don't see why doctors can't ask if you want to know what your suffering from. Some of us want to know everything others prefer to be kept in the dark.

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Mavary in reply to Karenanne61

Thank you Karenanne61. I for one like to know as you never know if you can do something to help it.

Mavary profile image
Mavary in reply to Karenanne61

They tried to do the same with my Husband. I think it’s policy that they don’t tell people of nasty diseases because of the reaction some people have.

I am so sorry to hear about the diagnosis and that you had to push to get them to tell you. Why they wouldn’t immediately identify the problemAnd start treatment makes no sense.

In a brighter note, I am not sure if this is helpful, but I have recently come across a few articles about reversing lung damage and fibrosis research. Obviously things are early, but there are several veins of research that hold some promise in possibly reversing lung fibrosis. Here’s an example from 2019:

newsnetwork.mayoclinic.org/...

I don’t know when clinical trials will happen, but we can all do our best to keep each other informed of possibilities 😀

Mavary profile image
Mavary in reply to TumbleDrum

Thank you TumbleDrum. I’ve just seen your message about the mouse. They knew about that when my Husband was here. I had great hopes for it but it didn’t come to fruition. That must have been ten or more years ago that the knew they could reverse fibrosis. I would never put my hopes on that. They said they do this on mice because their anatomy is similar to humans. If so why hasn’t it come out for humans?

TumbleDrum profile image
TumbleDrum in reply to Mavary

I don’t know the timelines involved in most of this research, but these articles are at least recent (2019 & 2021). If I see any upcoming trials as things progress, I will try to let you know. Of the two, it seems like the 2021 article has more promise since that is using an available medication.

As for the diagnosis, I can’t imagine how difficult it was to lose your husband and now be facing this terrible disease. Please know that you will be in my prayers.

Mavary profile image
Mavary in reply to TumbleDrum

Thank you Tumbledrum. I’ve got plans to be around a long time yet. I know the prognosis is not good. They say about five years but I’ve got a friend that was diagnosed with it at least twelve or more years ago. It’s surprising how you make friends with people who are in a similar boat. I can’t remember the hospital where they do the trials but it’s a long way from the South West of England. I still will be interested in where and when trials are. Of course I would be!Funny enough when my Husband had it I said I wish I could have it for him. I hated that he was so poorly.

What I’ve got at the moment is not too bad. It’s like I say. My bones worry me more than my lungs. They stop me doing things I want to. It’s really annoying. I was loading the dishwasher and washing up the cats dishes and I’ve had to sit down because of my back. When my back hurts my breathing is bad. Otherwise it’s not a problem. If I sit and do nothing I’m fine. Xx

When I was consulting with a thoracic surgeon about a lobectomy, my husband asked the surgeon how many lobectomies he does a year. The doctor answered, "If I say 3, would you be upset? If I say 30 would you feel better? If I say 300, would that be okay?" This guy does lung transplants, but just because he's smart, a doctor can still be an ass! (I nicknamed him 'Dr. Doorknob' for his lack of people skills!) I'm sorry you had to push for some straight information. Now that you have it, you can choose how to react to it. Maureenpearl's story is an inspiration and I hope you find hope and comfort in it. Sending hugs and good wishes to you, Mavary.

Mavary profile image
Mavary in reply to dunnellon

Thank you. X

Oh and here is another one that is a little more recent but uses a currently available medication:

uab.edu/news/research/item/...

I am as you know a newbie on the forum but I am sending you my very best wishes ❤️

Mavary profile image
Mavary in reply to spk64

Thank you for your kind thought. X

Im sorry to hear that you had bad news.

Even if you have an idea somethings wrong it's still a shock to be told though.

Mavary profile image
Mavary in reply to Catgirl1976

I was surprised that the first night he told me it actually hit me but it’s no different than I thought before so I’m ok now. I can’t spend my life worrying about it. My life is already shortened by age. So I’ve got to get my life in order now and enjoy however long it is. It could be years yet. X

One of the things my OH said to me in the days after I had my diagnosis confirmed, and I was feeling a bit sad was along the lines of,.......

"....OK, so this isn't the best news, but aside from a conversation, rubber stamping other conversations and a big box of vile looking brown pills, what has changed sine before that day?

Are you another person? Are you ill? Has how you can live your life changed?"

To be fair, he was right. My condition has been given an official name, and I have accepted the option to take medication, hoping to improve my outlook, but I didn't lose a leg, or my sight, or my ability to live in exactly the same way as the day before the label.

It's on that basis, and the words of my consultant that I'm getting on with it.

When I last saw the consultant, a couple of weeks ago, I explained my approach to it and asked if that was the wisest way. Her response is she couldn't tell anyone how to live their lives, but trying to live my best life each day makes sense.

Mavary, please, please don't think I am knocking you when you feel down. I'm not. I have no idea what you do or don't have to contend with. I'm just trying to express some hope and comfort.

Mavary profile image
Mavary in reply to MMaud

Thank you Moy. I’m not depressed at all. I’m not that sort of person. There is no change to what I knew before. To be honest I find my bones are more of a worry to me than the fibrosis. I’m restricted in what I can do because of pain from them. I do get a little breathless but nothing major. This will be four years nearly since diagnoses so I think I’m doing quite well. It’s just annoying that they didn’t tell me . Especially because I’ve had experience of it. I have mentioned to my Children I might have pulmonary fibrosis before it was confirmed. But they poo hooed me. Now it’s confirmed I’ve told one of them. He’s sworn to secrecy because another is on holiday at the moment. Please don’t think it will stop me living my life. It won’t. Xx

Hi Masaryk, my husband was diagnosed with Pulmonary Fibrosis December 21, we don’t know if it’s slow growing or not till further tests but our attitude is we’re “living” with it, doing as much as we can while we can not knowing what the future will bring. Good luck, keep active as much as possible and enjoy life, do what you want to do.

Mavary profile image
Mavary in reply to Xrossstich

Hi XcrossssstichI’m so sorry he’s been diagnosed with pulmonary fibrosis. I’ve already lived through my Husband having IPF. which is the. More aggressive strain of Pulmonary fibrosis. It’s ironic that I’ve got it. You are doing well. Definitely do everything you can. My Husband and I went on cruises. We went to Hawaii and New York. We had some wonderful holidays. When we weren’t abroad we were going to a town not too far from us or going down to Devon or Cornwall. We had some fantastic times.:

The longest Pulmonary Fibrosis survivor is seventeen years so use up however many years doing what you’ve always wanted to. X

Xrossstich profile image
Xrossstich in reply to Mavary

Thank you,

Thinking of you and hopefully you get the best treatment you can. 💕

Mavary profile image
Mavary in reply to 20WildRose19

Thank you. X

I haven’t read all your messages. Do you know what sort of fibrosis you have?

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Mavary in reply to Catlover432

Yes it’s Pulmonary Fibrosis. Not IPF.

I’m sorry to hear. The thing is we know our bodies !!! After two weeks of chest infection not getting better and the nurse saying I need an X-ray which I went for last week to then be done nothing wrong!!!!! I was then put on different antibiotics dicloxacillin for seven days. Why I thought do I stay on amoxicillin when it never clears it up!!! I was told if I’m no better by tomorrow to call in… we’ll the thing is I do feel better but my breathing isn’t fabulous although I do seem to have more energy than last week. Oh get this - the nurse said I should buy an oxygen gadget to put on my finger to check my levels - she didn’t explain why or what for??? Incredible

You will have to Hector the nurse to explain what the finger peg is for and why you need it!

With all due respect the communication in healthcare is rubbish!

Mavary profile image
Mavary in reply to pepparuby1

It’s called an oximetre and it measures your pulse and oxygen level.

Mavary profile image
Mavary in reply to pepparuby1

So have they told you now what’s wrong? Just ask them well what is wrong with me. They have to tell you by law. They can hide things for as long as you don’t ask them. X

Don’t worry darling iv got it by taking methotrexate but they’ve put me on mycophenolate and steroids and my health a lot better, our NHS are the best

Mavary profile image
Mavary in reply to Georgiab123

That’s good. I’m not so sure my Drs or Hospital are quite as good. I haven’t been seen for I think it’s three years this year by a Consultant.. Not that there is much change. I wouldn’t have known I had it or that it’s beginning to spread if I hadn’t asked.I don’t know when they were thinking of telling me. Perhaps when I was dying. It’s just not good enough.

Patk1 profile image
Patk1 in reply to Mavary

Its worth requesting whn they write to your gp,u get a copy too Mavary xx

Mavary profile image
Mavary in reply to Patk1

They won’t be writing as there is no plans to see me.

Please don’t worry , in lockdown before medication my health went right low I thought it was my end I went down to 6st 4ib now I’m on medication I’m 8st I’m taking on day at a time please things will get better just enjoy day by day x

Mavary profile image
Mavary in reply to Georgiab123

So have you got PF too. At the moment my lungs are quite good. I do get a bit breathless but nothing I would worry about. I’ve got more to worry about my bones. I have Osteoporosis very bad and I’ve got multiple fractures that are very painful. 6 stone 4 is very light. I wish I could lose some. I’m 9 stone 3. Too heavy for my height now. I was 5’ 2 or 3 The last time I was measured I was 4’11” I think I’m even shorter now as I’ve had four more spinal fractures. The Dr asked me if I was depressed or have lost any weight. That immediately rang bells for me. That’s when I asked him have I got pulmonary fibrosis. My Husband lost about three stone with IPF. X

Georgiab123 profile image
Georgiab123 in reply to Mavary

Please mavary I’m the same iv got arthritis’s as well try get your GP to refer you to hospital x

Mavary profile image
Mavary in reply to Georgiab123

I was in hospital when they discovered it. They just neglected to tell me. I’m in more or less the early stages. I know I’ve had it for nearly four years now. But so far it’s only moving slowly. I’m keeping my fingers crossed it stays that way. I’ve come to terms with the fact I most likely had it so I’m prepared. I’m going for a blood test to see if it’s affecting my heart. If it is the Dr will get me in for the scan which I was promised it will be last year. I went into hospital with pneumonia four years ago I came home, passed out and went back to hospital where they discovered I had Aspergillosis. They also discovered the PF but never said anything.

Georgiab123 profile image
Georgiab123 in reply to Mavary

God love you , you’ve had a bad time, just stop worrying please take life easy I’m always here for you x

Mavary profile image
Mavary in reply to Georgiab123

Thank you Georgian it’s always good to have a friend.

And they wonder why we Check it out with Google ! Years ago Doctor's didn't have to tell you what was wrong and what they were looking for but now they do and should when it's confirmed, I think the majority of us prefer it that way

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Mavary in reply to poppyshola

Exactly. I like to know things.

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