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Diagnosed with Idiopathic Pulmonary Fibrosis is there any hope?

11 years ago•19 Replies

All the surgeons want to do is cut pieces off my lungs, can't see the point when they tell me there is no cure and a long wait for a lung transplant. I have heard of clinical trials but not sure how to get on them, please help I am 36 and have a life at the moment.

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Drew36

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19 Replies

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12 years ago

All ways hope .. Looks like the road i will going down .. You might not seem lucky but you are as lung reduction surgey will help ... Where a say your lucky is there is others who have same condition .. But surgey is not offerd as its in a place where it inposable to do out but lung transplant

All the best and try to stay positve

Drew36• in reply to12 years ago

thank you so much for kind words. I have been in touch with royal brampton and now have an apt for April 8 so hopefully they may have some more news.

cofdrop-UK12 years ago

I don't have IPF Drew so would not be of help but maybe a chat with one of the lovely nurses at BLF 03000 030 555 will be really helpful to you.

I wish you well.

Love C xxx

Drew36• in reply tocofdrop-UK12 years ago

Thank you so much for this advice, I am going to call them tomroow

12 years ago

Hi Drew.

Have you been seen by one of the specialist hospitals, e.g. Royal Brompton or Papworth? If not I would suggest you ask for a referral. I have been seen by Royal Brompton and am currently having loads of tests (Bronchoscopy due next week). I think the only one they haven't done is a pregnancy test but as I am 64 and had a hysterectomy years ago, that's no surprise

They at least give me hope that if anyone can do anything they can because they have specialist knowledge of all current research and trials on IPF and have treated me with great care & respect.

You are too young to let this beat you without a fight although I do know how frightened you must feel. Even though it is difficult at times it really is important to try to stay as fit and positive as you can.

Why not ring the BLF Helpline as soon as you feel upto it; I.m sure they will help you as much as they can.

Big Hug - Syl (oka Mapal) X

Drew36• in reply to12 years ago

Brilliant, I called the Royal Brambpton and have an apt with a Dr Toby for April 8th (I think thats his first name) sec tessie.

• in reply toDrew3612 years ago

May well be Dr Toby Maher? You may want to have a look at this link (I hope the link works but if not copy & paste it into your browser.

rbht.nhs.uk/healthprofessio...

Good Luck & let us know how it goes. X

amagran12 years ago

at such a young age you must fight this disease with all you can, push for every bit of help they can offer. Like Mapal says, stay positive and keep coming in here for positive advice. xxxxx

Drew36• in reply toamagran12 years ago

I want to fight but am gettig mixed messages, my financee has decided she does not want to be lumbered with an invalid

12 years ago

Last year I was also diagnosed with IPF. They wanted me to have a lung biopsy and I also didn't see the point but I went ahead with it. Glad i did because hey changed their diagnosis to sarcoidosis. Still not a nice disease but at least there is a treatment. Have the biopsy and see what happens. Good luck.

liftman12 years ago

Hi Drew, thats good advice coming from others, yes there is hope even if you do have IPF.I was diagnosed with IPF 8 years ago. I am 70 years young and still enjoy life.Be POSITIVE.I joined a gym for light exercise, just 30 minutes a day on treadmill and bike,which was a great help, I came away feeling better in body and in mind.Keep in touch through blogs and use the BLF, good luck to you, Terry

Oxyjan12 years ago

Hi Drew, Sorry to hear you have IPF. I have it too. I'm 44, male, a father of an eight year old boy and happily married. My disease seems to be progressing fairly quickly. I'm in contact with the Papworth via the Royal Brompton for a possible double lung and liver transplant. Sounds scary but unfortunately for people like ourselves it really is the only way out. At least we're young enough to have this option and hopefully won't experience the full horror of end stage IPF. Day to day life is fairly comfortable. Breathlessness is an issue with mobility so naturally I have oxygen to ease this. My wife and I have adjusted to this situation fairly well. It's not been easy as I used to be a very active person. Overall though I have to say I feel quite positive about the future. We do have lung transplantation as an option and although the survival statistics are eye opening each of us is diffrerent and may live many years to come. If you need to chat or have any questions regarding this disease I'd be happy to reply.

Bye for now. Jan.

HEAVYBREATHER12 years ago

Drew, I have had IPF for 7 years. I have recently asked for a second opinion and been referred to the Royal Brompton. I exercise very regularly and I think that has helped me.

I have also found that the specialist facebook and yahoo groups offer a lot more support as there are quite a lot of younger patients in those groups. Lung transplant is not the only way, there is a new drug that is available called Pirfenidone. You should ask your consultant about that. BW HeavyBreather

Alan46ipf12 years ago

Hi drew I also have ipf I was diagnosed last July I'm a married man of 46 with 3 children I had my biopsy with vats in sept i was off work 5 weeks after it . I'm not on O2 as yet but my sats do drop when exercising. Try to keep as active as you can and exercise your lungs. I have been referred to the freeman hospital my first appointment is on 2nd may to see if I'm suitable for a double lung transplant fingers crossed. I also use the Facebook group pulmonary fibrosis uk there is loads of fellow sufferers and carers on there with lots of good advice. Hope all goes well for you. Alan.

phillipehenry• in reply toAlan46ipf12 years ago

Hi Alan, what was the result of your first appointment at freeman. I'm still waiting but if all goes well I will have a one day outpatient appointment and if all still goes well I should go in as an inpatient for assessment

Alan46ipf• in reply tophillipehenry12 years ago

Hi Phil it went ok the first appointment is just a load of the usual tests and you meet a Dr you don't find anything out. They call you back for another 1 day and do all the same tests so they have a comparison . Then after they get results they call you back for a 4 day stay that's when they do loads of more tests and on the last day you find out if your on the list. Anymore info please ask.

phillipehenry• in reply toAlan46ipf12 years ago

Hi Alan,

Thanks for the reply, I'd like to to stay with you for the whole process so that I know what to expect, if you are agreeable. Have you had another appointment since 2 may?. I'm on facebook so I'll see what I can on the pf uk page.

Alan46ipf• in reply tophillipehenry12 years ago

Ok mate I'm always on the Facebook group pulmonary fibrosis uk site . It's very helpful.

phillipehenry• in reply toAlan46ipf12 years ago

I've joined and already given some info to another member. keep in touch.

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