[Ken Room]

Hi Charlene,
As with all IPF sufferers, I have encountered numerous changes in my manner, thoughts and outlook since first being diagnosed. As you may recall, I’m 83 and would normally have put them down to my age but now I cannot be certain.

Feeling constantly tired and weak limbed.
Annoyed and frustrated at not being able to carry out the simplest of tasks.
Loss of appetite and body weight.
Previously very patient manner, now l feel unnecessarily irritated by the slightest inconvenience.
As a lifelong lover of puzzles, I often find now that I give up too easily.
Now very jumpy and react at the slightest sudden noise or movement.
As at this moment, a general feeling of lethargy and boredom much of the time.

I apologise if I am coming across as feeling sorry for myself. Far from it. It’s written in the hope that others will, in some way, find an understanding of their own situation. In spite of everything, I remain happy and well cared for.
I just do not like feeling to be a burden to my loving family and friends.

Bless you all.

Ken.

[Ken Room]

Hi Charlene,
Not to put too fine a word to it, you are amazing. Your wisdom, kind thoughts and encouragement to us will is phenomenal. I, and I know that many of us afflicted by this illness, gain much comfort from your numerous articles.
I cannot see what more you can do than to carry on as you are. I’ve no wish to embarrass you but just to thank you for all your help. We all love you.
Ken.

[Ken Room]

Hi Charlene,
Thank you for your prompt and courteous reply. Just to keep track I’m in London. For the first few days I was given an ECG, X-Ray, CT scan, MRI scan, and finally an ultra sound scan. Until the US scan nothing was seen and the doctors were thinking that Ofev might be the cause. I’m in a local hospital but my IPF consultant is in Guys Hospital in south London. Liaison Between the two has been ongoing throughout. Not finding a physical cause Ofev was becoming the main suspect until a small stone was seen in my bile duct. Also something inside of me is apparently in the wrong place. I think gall bladder was mentioned. I have resumed taking Ofev. Strangely enough my blood pressure has remained constant during this time and my daily Lasartan pill has been discontinued. I’m now due for an endoscopy tomorrow to locate and remove the stone and, I suppose, to resite whatever to its correct position.
I tried on numerous occasions to ascertain the situation re. Ofev but it would seem that patient/doctor communication in Canada is better. I’m due a lung function test and consultation on 22nd May. Hopefully I’ll learn more then. Apologies for the delay in replying but my one finger typing is not the best

Kindest regards.

Ken

[Ken Room]

I have been diagnosed with IPF for three years or so. Have been on Ofev for just over two years. Have heard “advanced” mentioned. I have been in hospital for the past two weeks with jaundice. During this time I have not been given any of my usual medication, including Ofev. I normally take two capsules a day. I have not noticed any change in my condition but am wondering how this will affect me.

[Ken Room]

Yes