I am scared now but I am still trying to be Positive.

[mattcass]

Why Oh Why did I look at the worse outcome of my IPF, I kept thinking to myself I don't know why ( to much time on my own to much time to think ) what if I was refused a transplant for some reason is there anything on this page that would reassure me, well it certainly opened my eyes the words fatal are mentioned before transplants becomes an option, My age group is just over for not getting one or being recommended for one. If you someone know or have heard of anyone who is 62 years old or older it would me feel better till I talk to chest consultant. mattcass

[scrobbitty]

Talk to the BLF - I am sure they will be able to help you in some way - 03000 030 555.

Life is more than 'what if's' at least I flippin' hope so !

[Jo_BLFHelpline British Lung Foundation]

Hi mattcass

The internet can be an invaluable source of information but it can also be be very frightening aswell.

Being diagnosed with a chronic illness can be hard to cope with and i think it is our natural inclination to go onto the internet to find information, i think it has kind of replaced the family health encyclopedia.

There is some stuff out there that isn't helpful or supportive and anyone can write stuff ont he internet.

I am sure you will find lots of support and information on this site - you can also call us on 03000 030 555.

Cheers

Jo

[mattcass in reply to Jo_BLFHelpline]

Hi Jo thank you, I feel I have went from a positive attitude to a nervous wreck overnight, do you know off any age group barriers that applies to transplants, or am better the web page might have been a bit outdated, Fran has told me that the senior team in Edinburgh would not take my case on if this was not an option for me,mattcass

[libby7827 in reply to mattcass]

Hi Matt, Fran's right, you wouldn't have been considered for a transplant if it wasn't a viable option. I was refused after initially being told it could be an option, as I have osteoporosis (which doesn't actually cause me any problems and is being treated extremely well), which means the ribcage could crumble during such an invasive operation. I don't know if it's just nature's way of helping us, but I really didn't feel too disappointed and came to terms with it very easily. Best place for support and info is this site where you have real live people (ha ha!) to tell their stories and the BLF (also real and live, I believe!) to give you the best info. All the best. Libby

[Hidden]

Scrobbitty's right, Mattcass, talk to the nurses. They'll be more in a position to advise and guide you.

Don't brood upon these things; the "what ifs" rob us of the "here and now's".

Take care Matt

Sandra x x

[Jo_BLFHelpline British Lung Foundation]

Hi mattcass

Usually the age limits are 60 for a double lung transplant and 65 for a single transplant.

I have put some links in about lung transplants which gives accurate information from the UK:

blf.org.uk/Page/Lung-transp...

nhs.uk/Conditions/Lung-tran...

Any questions please call us - 03000 030 555.

Jo

[Hidden]

Hi Mattcass I think there is much you can do to avoid rapid deterioration. Jo gives some great advice, I am sure IPF patients benefit from pulmonary rehabilitation as other lung patients do, its a good course to access by GP referral, a good diet and the importance of daily exercise, stopping smoking are just a few things covered on a pr course.

A lot of lung patients achieve quality of life by doing the right things in the early days of diagnosis and continuing to keep up the advice learnt on the PR course and that recommended by the professionals, all can make a tremendous difference.

Many lung patients do precisely what you have done and felt precisely as you do, but things are not as bad as first believed and the options for improved quality of life are available.

There are many lung patients enjoying some quality life experiences over the age of 60. There is a process of adapting our lifestyle a little during the early years of diagnosis which can take some getting use to, it is a process that mostly can't be avoided but once accepted and applied things can become a lot easier, emotionally and physically.

If think if you phone the helpline as already suggested you will feel more reassured and have more understanding that actually yours need not be the worst case scenario.

Check out UK, NHS information when you google search, I usually put UK or NHS after the topic I am searching for purely because I live in the UK and that information is more likely to apply to my circumstances, it also can be helpful to check the date on publications.

Hope you find yourself looking toward some brighter days real soon.

All good wishes BC

[mattcass in reply to Hidden]

Hi BC Thank You, its only been three months since I was diagnosed with IPF, PF for 7 years before that, but its the RA that has done the irreparable damage and will continue to do so as any meds for RA are being rejected by my Chest Consultant I will go on the web pages you and Jo from the BLF Helpline have mentioned and have a look.Mattcass

[maggie44 in reply to mattcass]

Hi mattcass

I too was very scared when I was first diagnosed with pulmonary fibrosis in Feb 2010 - chest specialist when I asked, gave me a prognosis of a 'few years'. My PF is caused by my auto-immune disease - sjogrens syndrome so most of my treatment has been aimed at damping my overactive immune system down. I asked my rheumatologist who oversees my treatment if I could be referred to the Royal Brompton Hospital as I had read about a new drug pirfenidone that they were trialling. He did so, but when I got there it turned out that prifenidone is only effective with Ideopathic PF (no known cause). However they have been overseeing my treatment ever since in conjunction with the rheumatologist - had a series of 6 chemotherapy treatments - which appears to have stopped the fibrosis getting any worse in the last year. Luckily their tests also showed up the pulmonary hypertension I was also suffering (another rare and equally horrible illness involving the heart and lungs) so they passed me over to their specialist Pul Hyp team. They are working dilligently to try to get this under control. I am 68 now so transplant is not an option for me but I am grateful for all the knowledge and effort the RB specialist teams, together with my lovely rheumatologist, are putting in to give me the longest and healthiest life possible. I also think Pul rehab is very worthwhile in helping you keep as active as possible - plus trying to have a positive attitude. I am on oxygen at night and more recently had to use it during the day also since being in RB hospital in January with pneumonia. However this last week I am managing to keep my SATS up to 90-92 when sitting - without the oxygen- so getting a bit stronger slowly! Still need ambulatory oxygen but that has been true for some time.

I keep remembering my dad who was given 6 months to live when I was about 3 years old ( only half a working lung and serious COPD type chest problems.) Despite many years of illness he did manage to walk me (very slowly) down the aisle when I was 19 and hold my eldest son when he was born when I was 24. Sadly he died about 10 months later but had been there to share some big milestones in family life.

I have decided to ignore the prognosis for both diseases and just keep on taking the medication and advice on offer and make as many good memories for my family as I possibly can.

Maggie

[mattcass in reply to maggie44]

Hi Maggie thank you for your kind words, my main concern at the moment is the damage that the RA is still doing to my lungs as I am not receiving any treatment for this, my respiratory consultant will not consider any of the Rheumys meds. Good Luck, mattcass

[maggie44 in reply to mattcass]

Hi mattcass

Have you read this article on the National Rheumatoid Arthritis Society website? If not it may give you some useful information about possible treatments. I assume you attend one of the 9 or 10 hospitals that specilise in the treatment of pulmonary fibrosis or ILD?

'The effect of rheumatoid arthritis on the lungs'

Dr Clive Kelly MD FRCP Consultant physician, department of rheumatological medicine, Queen Elizabeth Hospital

Original article: 15/09/2011

Maggie

[Hidden]

The internet can be as scary as it is useful! Please ring the BLF helpline and talk to people who know and can give you advise. Try not to be scared - you will feel better when you have the information you need. Perhaps the BLF can advise on what to ask your GP, consultants etc. Take good care of yourself. Try to enjoy each day for what it is. If you are having a good day - all the better! With love TAD xx

[Sooki]

Hi,I am 63 and am in the process of tests,x ray showed fibrosis,I asked to be referred to Papworth although I live in Birmingham.My mother was diagnosed with IPF at 80 .I had tests last week and am due for a CT scan and 6 minutevwalkntest next week ,they are very speedy with appointments.I waited over 2 months to hear from my local hospital,so decided to ask my GP to refer me to Papworth ,you are entitled to choose where you want to be treated.Papworth is a centre of excellence for IPF. I am also scared about the fatal outcome,I hope to be prescribed the new drug pirfenidone,,will let you know how it goes with Papworth.lindy