Just diagnosed with IPF.: My mother has... - Lung Conditions C...

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Just diagnosed with IPF.

11 years ago•14 Replies

My mother has just been diagnosed with IPF. She has never smoked but was exposed to it over the years. I was wondering what to expect and what help is available for her. She is 79 and gets breathless quickly but denies that she has a problem. Any advice will be gratefully received!

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Penped

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14 Replies

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Pepsicoley11 years ago

Hello Penped

I'm so sorry that your Mother has been diagnosed with IPF (I had to look that up on Google). Apart from your Mother suffering from this condition it must be awful for you too.

I have COPD/emphysema so don't know what you should expect. Perhaps you could speak to her Doctors or speak to the BLF Helpline Nurses.

If Mother could accept that she has a serious problem then it would help you as well as herself.

Kind regards Penped

Love and hugs

Annec

xxxxx

phillips111 years ago

Hiya Penped

As Pepsicoley says, the best bet if for you to phone the BLF helpline and explain the situation. The BLF nurses are brilliant and they will tell you what all your options are.

Their number is: 03000 030 555. Please give it a try

Best regards

Bobby

Lynne195511 years ago

Just to say hello too. I don't have IPF but others on this site do, so I am sure they will be along.

Lynne xx

Penped11 years ago

Thank you for your kind words. I was with Mum yesterday when she was given the news. I don't know if I am doing the right thing but as she doesn't fully understand the full implications of the condition I am not going to explain until it is really necessary. It is good to know that there are people out there that know what I am going through. The doctor just gave the diagnosis and said I will see you in September!

11 years ago

Hallo from me as well.I have asthma & copd,so not much help to you,but you have got some good advice from others.I wish you & your Mother all the best,it will be tough for the both of you,so do get some support,

Love Wendells xxx

11 years ago

Hi there I have copd & osteoarthritis so I cannot help you but there are lots of lovely helpful people on here who will. Good luck xx

Sooki11 years ago

Hello,my mum was also 79 when she was diagnosed,she also didn't understand the implications,she died at 83 but not actually from IPF.I have also just been diagnosed with IPF and emphysema I am 63 and I do know the implications.Has your mom been referred to a lung specialist,my mum did have some treatment,there is not a lot but the symptoms can be helped,has she been prescribed oxygen.There is a huge amount of info on the Internet.Although I live in Birmingham I go to Papworth as it is the centre of excellence for lung disease.I don't know if your mums age or other health problems may be a factor in her treatment.One of the main things is to try to keep her active and a really good nutritional diet,my mum lost her appetite and ended up malnourished.I looked after her for 3 years it was breaking her hip that eventually killed her along with lack of care at the hospital,but that's another story.You must demand the best for her.I don't know where u live but there are some good lung people out there,use the Internet.Good luck,u can ask me anything if I can help.Linda

Penped• in reply toSooki11 years ago

Thank you Linda. At the moment she still goes out but the times she does are responsible and far between, my husband and myself usually take her. Also I do cook her food most days so I know she is getting good food otherwise she would live on soup. We live in South Wales and the hospital have put her on anti reflux treatments to try and help her cough. We only saw the registrar so I think I will ask to see the consultant when we go back in September. Thanks for your help. Karen

• in reply toPenped11 years ago

Hi there Penped/Karen! You said that your Mum denies that she has a problem but could it be that she is just choosing to ignore that she has a problem and is trying to carry on "as normal"?

I am 64 and also have IPF which was diagnosed in 2009 but was probably there since 2007. I know that I may die of IPF but I also might not (Red bus may get me first :-)) so I am certainly not going to dwell on it - all that would do is depress me & my family & friends who love me. Maybe this is how your Mum feels too?

Nevertheless, like Linda I have been to one of the specialist IPF centres (Royal Brompton - even though I live in Lancashire!) and my family and I now feel that we have done as much as is humanly possible so we now carry on "as normal" and that is certainly what I want to do. Maybe you could persuade your mum to see one of the specialist consultants "just to set your mind at rest"?

I take Omeprazole for Reflux and Royal Brompton recommended N-Acetylcysteine (NAC) which has certainly helped me. I also take half a co-codamol at night which suppresses my cough enough to get a reasonably good nights sleep. It is also very important for your mum to avoid anyone with infection and get antibiotics immediately if she does catch any chest infections. If I can help with any other info just message me. Love is the best medecine! Take care. Syl. X

hufferpuffer11 years ago

Hi Karen, I don't know a great deal about IPF but am reading up as I'm waiting for test results,I just wanted to say how I think your Mum is Blessed to have you, you are already doing the best things you could do for her just by being the loving daughter that you are, all the very best,Carol x

peege• in reply tohufferpuffer11 years ago

Ditto here

hufferpuffer• in reply topeege11 years ago

(((((((( hugs )))))) x

Lillytan11 years ago

Hi Karen! If you have Facebook there is a wonderful site you can join for people and family members for IPF you send a request to join as it's a closed group and there are a lot of very knowledgeable people just like the ones on this site who can advise you or just listen to you. I am a member although as I tell everyone...I am as of yet I diagnosed.

yumyum11 years ago

hi Karen i have recently been diagnosed with ipf and i may have had the problem for a while, i find that living near the sea in a reasonable warm climate helps my breathing also swimming and walking helps a great deal i am 76 yrs old ,

good luck, yumyum

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