Cruel disease

Hi, I'm new to the site and wish I'd found it months ago! My dad died of IPF 4 weeks ago. I'm really struggling to come to terms with it, and after reading the site, I'm wondering if more could have been done to save him? He was on oxygen 24/7 but he was doing really well, then bang, he went the docs for a check up, got sent to a+e and died 4 hours later! To top it off my grandad died 5 hours earlier so it was a double devastation for us all. I know I can't bring him back but just wanted some support. Thanks xx

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19 Replies

  • Hi and welcome Lucyjoe. Sorry to hear about your losses. I don't have IPF s I can't help you with that but I'm sure there will be someone along to discuss it with you who has.

  • Hi hun,

    Like Puff I have no knowledge of IPF but my heart goes out to you, two losses in such a short space of time.

    Do make sure that you take a little time out to 'chill' - I know that's easier said than done but you must believe that they'd both want you to look after your own mental health as well.



  • Hi. I also suffer from IPF and I'm afraid that is very little that can be done for us it's just a matter of trying to keep it at bay. I've noticed that I can be feeling quite well for quite a while and then for no apparent reason become quite ill and never fully recover.

    I'm feel very sorry for your double lose and can't really imagine what you must be going through. I hope you can take solace in the fact they are both at peace now. XX

  • Agreed Idiopathic Pulmonary Fibrosis Is Like Baldie Say's Very Little Can Be Done But Am Sure Every Thing That Could Was Done .... Like You Say About Oxygen Now A Don't Now How Long He Was On It ... But He Was Lucky As Sum Don't Respond Well As Its The Damage To Lungs That Covert The Air We Breath Like Baldie Say's Can Be Fine One Minute And Very Ill Next ..... So Sorry To Hear About Your Loss

  • Oh Lucyjoe,just want to give you a big hug.Poor darling,what a lot to cope with,it must be horrendous for you at the moment.Do hope you have some good support out there.

    I don't know enough about IPF either,so can't comment there.

    Do look after yourself,let us know how you go.

    Love Wendells xxx

  • Thank you everyone for your comments. Dad was only diagnosed 12 months ago and had been on oxygen for 4 months so not long at all really. It makes you realise how little is known about IPF and in my dads memory I'm determined to help fundraise so there is research and better awareness about the disease. X

  • Idiopathic < Part Of Pulmonary Fibrosis Means They Don't Know What Caused It ... But Most Likely Source Is Pneumonia And Or Damaged Lungs From Medication And Or Working History

    Am Really Sorry For Your Lose Thats Why I Tend To Go On About Doctors Myself And Miss Diagnosing People

    All The Best

  • Good for you. I was diagnosed 5 years ago and given two years to live without a transplant. I haven't had a transplant, no longer an option, but I'm still here. I've been on oxygen 24/7 for 2 years now but am still able to get around, albeit slowly..

    You're right though not enough is known about IPF the first consultant I saw didn't know what to do with me, fortunately he sent me to someone who did. She was able to prescribe a course of chemotherapy that slowed down my quite fast decline. So I'm afraid it does depend on whom you see.

    Stay strong and remember the good times I'm sure you had with your father and grandfather. XX

  • Hi Lucyjoe, i lost my dad to ipf 3 months ago so if you wanna message me anytime for a chat, ud be welcome. Ive posted a few blogs on here since dad has his awful news a year ago almost so you may wanna have a read sometime.

    Take care x

  • 6 months ago yesterday my dad went :(

  • how are you keeping? x

  • Thank you everyone, my dads was idiopathic so they say but I'm sure it was caused by 35 years of working in the pottery industry and all the clay dust that flew around. Companies would be paying out millions in compensation if all cases were work related diagnosed! X

  • As We Have Seen ... There Is A Lot Of Lung Conditions Go Undiagnosed Or Even Classed As Mild COPD... For Reasons You Have Said And The Final Blow Is Crap They Come Out With As Far As Welfare Reforms ... Sure There Is Few Who Swing The Lead But Majority Are Ill

    Take Me For Example A Got Hold Of DWP And How Atos Should Be Assessing Those With Work Related Chronic Lung Disease Due To Asbestos Exposure ... The DWP Say Atos Assessments Are Useless And Most Hospital Xrays Are At Picking Up Chronic Lung Disease Due To Asbestos Exposure

    DWP Say In There Atos Doctors Hand Book That Chronic Lung Disease Is Related To Asbestos And Smoking Is Not A Major Factor

    Yet Atos Doctor Refused My Claim Saying Its Nothing To Do With Chronic Lung Disease .... So Why They Abusing Due Process If The DWP Know This

    Who Is Right My Understanding Of Chronic Lung Disease Its Made Up Of 3 Components 1 Your Lungs Have Suffer Major Catastrophic Lung Injury Trauma 2 Is You Have Bronchitis And 3 You Have Emphysema

  • i so agree, same with dad, he spent many years working for the steel works then the electricity board cleaning panels covered in asbestos!

  • Sorry for your loss, it's must be terribly sad for you! My dad was diagnosed earlier this year with pulmonary fibrosis and we were told he has only weeks to live, he has lasted longer than they thought, he is on oxygen 24/7 and has good days and bad days, he is fine when sitting still but as soon as he moves it is awful to watch. He has to go to the hospital for blood oxygen tests next week and I don't think he should be going as I am worried it will make him worse going out of the house, and what good will it do? But my mum grew up in a time when you don't question the doctors authority, and thinks he as to go. Tough days ahead.

  • Sorry about your dad, all that you can do is be there to support them both through this awful time and make as many memories as you can whilst you still can. Hope your dad gets on ok if he goes for the tests. Let us know. Xx

  • The Respiratory nurses in our area have a gadget for doing blood gases at home - hospital tests are usually into the wrist and often painful - the Resp. Nurses can get a sample from the earlobe and test it with a portable device. Might be worth checking out if they have this in your area, rather than dragging him into hospital. Good luck! Gill

  • Hi everyone, today has been a good day, done my dads garden today with my mum, not a clue what are plants and what are weeds but I know he will be happy we are keeping it tidy :-) also bought a bike today and applied for the London 100 bike ride in August to raise some money for blf. Fingers crossed I remember how to ride a bike after not being on one since I was 15! X

  • Good luck with the bike ride Lucy, I hope you raise lots for this cause ! I hope you and your mum enjoy many happy hours in the garden remembering your dad, x

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