Does any one have statistics on the number of successful lung transplants versus the number of failures or rejections? I have heard of complications with lung transplants. Is there any data on the length of time that extends an IFP life?

my question is “ending Esbriet” rather than starting it…. I have been on |Esbriet for several years and it definitely has slowed down the progression of the scaring in my IPF lungs. However the last breathing test identified that esbriet was no longer slowing down the progression and the government medical plan was no longer going to… Read more

hi to all Esbriet users.  my concern is not starting esbriet, my concern is what happens when you no longer can take esbriet because it is no longer slowing  down the rate of IPF.

how long can you continue to take esbriet?  Is there a limit to time frame when esbiet no longer slows the scaring of the lungs and you are taken off of esbriet?

Have you ever tried increasing your oxygen levels?

I find that if I turn the oxygen levels up it helps with moving around

i usually am at 2.5 to 3 when sitting

If I have to get up and walk I turn my oxygen levels up to 4

this helps

Dave

great web site Robert — BUT it is all for pulse POC….  unfortunately  I require continuous pulse, and can not use or manage Pulse devices.   so does any one know about continuous feed devices other than canisters?

just a quick follow up to my post on what my lung specialist is saying about prednisone — his concern with prednisone is the impact that it has on other organs and parts of the body; and that more IPF patients have died from prednisone than those that have not taken prednisone. We all know that IPS is a critical disease without a cure… Read more

Thank you David Naumann as I too thought that there was confusion on this post, or is it me that is confused as to POC versus the oxygen concentrator/transfill system which I use either directly with a 50 ft hose or with the tanks that it refills. I gather that a POC unit does not deliver a continuous flow of oxygen, or is there such a unit? … Read more

just a message from my lung specialist he does not prescribe prednisone because of the many adverse dangers of its use. Before starting prednisone I would suggest that you get a second opinion.
Dave Collard from Ottawa Canada
d.collard@rogers.com

Hi Charlene, I told you I would respond and let you know what my Dr. said when I asked him if I could change to the ‘super pill’ as he called it – one pill containing the same power/potency as the 3 pills of Esbriet. He said he did not know if it was available in Canada yet, so I suppose I’ll have to wait until he finds out and gets me on to… Read more

Thanks for your reply Charlene and your notes about supplimentary  Oxygen – here are the responses to your questions:

As to the beauty of the West Coast – I was born and raised in Vancouver, a graduate of UBC and two of my children are living in Victoria.  I was hoping to visit with them this summer, however now being on Oxygen, my travel days… Read more

• What’s your name?  = David Collard
• Where in Canada do you live? = Kemptville Ont,
• What treatment facility are you associated with?  = I am being treated by Dr. Krishna Sharma
• What kind of PF do you have, and how long have you had it? = I was diagnosed with IPF in March of 2013
• Share an interesting fact about yourself = after 5 years…

Read more

It would be of help to know the differences between “liquid oxygen” and oxygen gas.  Who supplies liquid oxygen and what are the capacities of the tanks as compared with oxygen gas.  What are the costs?  Can you go further or do the liquid oxygen tanks last longer and at what rates of use?