David's story about the final stages of IPF

[kevinrobinson]

I wanted to share with you a blog post that we've published this morning.

David has had IPF since 2008 and is now facing the final stages of life. His blog post deals with the subject of dying in an honest and open way.

His story is really remarkable, and he is clearly very strong and brave.

You can read his story at: blog.blf.org.uk/2014/07/ipf...

[Hidden]

Just read this Kevin. I have tears in my eyes it is so honest and real. Thank you for posting it. x

[Hidden]

I found the blog riveting. I was diagnosed 13 years ago and up until January this year was getting by without too much effort........then I fell off a cliff. Now on 18+ hours oxygen and not able to do too much, all personal tasks I can still manage and I do get out and about on a portable concentrator to life is still reasonable. Still not been prescribed any medication as have not seen Consultant since before my collapse......at least I have some idea what is likely to happen in the future......

[longlungs]

Hi Kevin thanks for posting Davids story.I think there are probably many of us that wonder and worry about those last stages.He made me feel strangely comforted ,Ilike him had heard the words 'its like drowning or suffocating'! So am relieved to hear about meds to ease us through when we reach that time.Because I have had my naughty moments in life I fully expect to live for ever !!! Lol I wish Janexx

[Hidden]

Very brave .. Am lost for words really is defo not nice facing own mortality

But can see how hard it must be both physically and mentally

Am sure others have thought it would do us favour if we never woke up

Is hard esp when you love life

[Puffthemagicdragon]

Very moving but insightful.

[Offcut]

What a good, no great blog. Honest and to the point.

I have RLD and all I have been told is "Live with it there is not a magic pill for you yet." That is what I intend to do!

Be Well

[katieoxo60]

Thank you Kevin for the link, it's nice to know at the end there is help to smooth the passing, even if a sad thing to happen to any one of us. David is very brave to discuss it with everyone.

[Hidden]

Hi Kevin,thanks for sharing.David is brave,I am just so pleased he knows his passing into the next journey,will be a peaceful one.

I'm sure that anyone with any type of lung disease,is secretly afraid of the end,so this has probably given a lot of people some comfort.I hope he knows how many of us he has helped xx

[sassy59]

I have just read David's inspirational story Kevin and Wow! What an amazing man. xx

[artyarty]

what a unique story, I have suspected fibrosis not yet definitely diagnosed having been very short of breath since march when I developed a cough during the week that we were hit with very bad air pollution, since then I have been treated for Chest infection, age onset Asthma, blood clot on the lungs(turned out not to be), fluid on the lungs due to heart failure.

Just yesterday I was told it looked more like fibrosis and need to see a lung specialist. It is very scary and wish I hadn’t googled it but too late now, I can only hope it is not, I am 67 and have the most loving husband and hate the thought of leaving him and our 4 children and all our grand children.

I am trying to stay positive, exercise is not easy for me as I have a problem with 2 discs in my lower back and have to use two walking sticks, thank goodness for places like this where people can just waffle on to get it all in perspective

[simeon]

Hallo artyarty

Please don't be scared, it doesn't get anywhere and gets in the way of living. And that's what our families want most-to see us living. If you replace 'husband' with 'wife', our stories are very similar right down to 2 discs in my lower back damaged the doctors tell me by an 'over active life' when I was younger. Well, that's alright then-as long as it was caused by living life its a price worth paying, I think?! My wife looks after me night and day-she is incredible and my kids fuss and worry and send me pictures of grand children from around the country and the world. I now have a powered wheelchair so I can terrorise all and sundry and have races round the garden with my wife on the motor mower. We have a lot of fun and laugh a lot. We also cry a lot and there are times when I cannot move for the pain in my back (try declofenac sodium) or my Oxygen levels have collapsed into the low 70's and I am desperate to breathe. I am in the End Stage of Idiopathic Pulmonary Fibrosis. Life is a pain but I have so much to be thankful for and it is better to spend my time living in the loving relationships I have than spending what time I have worrying about the illness. You'll do just fine artyarty with the loving support of your husband and family.

[chazdancer51]

God Bless you David! you are a brave man and I hope I'm am as brave when my time comes. I have had IPF for 2 years now. It is good to know you will be peaceful in passing.. sleep well David.