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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 support payment. Has anyone experienced this situation and what happens when you stop taking 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
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 and that what remaining life we have should be as pain free and long as possible. If you believe that prednisone will assist with reducing your pain and increasing your quality of life — then go for it.
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? The concentrator system works well for me as I require continuous flow at the 2.5 level now when I am active; and I anticipate that the rate will increase over time. The concentrator also has the capability of filling tanks which take about 2 1/2 hours to fill and can be used at the 2.5 level for about 2 1/2 hours. The tanks allow me to take road trips and outings that are within the 2 1/2 hour time frame. I only need the 2.5 if I am active, so I can turn the dial down when I am sitting. This extends the length of time that I can be on the tank.
Great service from Medigas which is fully funded by the Provence of Ontario health plan. I also gather that I can get Medigas to install a temporary unit in a hotel room or home that I would visit at a location within Ontario which is remote from my home.
What I am seeking is information on a Portable Oxygen Concentrator which is continuous flow so that I can get to an airport and then participate in a flight that delivers oxygen and use the POC during the stay and to get to and from the airport.
Any suggestions on how best to travel with oxygen ?
David Collard at [email protected]
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
MemberJuly 3, 2018 at 11:46 am in reply to: Has anyone else seen a recent jump in the price of Esbriet?
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 it. He feels my fibroisis is doing just what he felt it would do, so has signed me up for 6 more months on the same Esbriet. 9 pills a day. That seems to be it for now. Same old, same old. Am certainly enjoying more sitting outside this year as it hasn’t been really hot.
Hi Charlene – the ‘super pill’ is available in Canada – I was given the option the last time I ordered my prescription for Esbriet – I thought it better to stay with the 3 per meal as I can stage the pills over the meal versus having to take one big pill… plus no one can give me any benefits that are in the new super pill.
so why change – if anyone knows if there is a benefit with taking 3 pills a day versus 9, please let me know.
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 are numbered. That is one reason that I was looking for ideas about liquid versus oxygen gas. Even though I am only on 2.5 oxygen levels for when I am active, travel with oxygen tanks is very restrictive. Further I am not certain how I would manage on a 5 hour flight, and what I would do about Oxygen tanks when in Vancouver and Victoria. Will be talking with my Oxygen supplier over the next few weeks.
Kemptville is just off the 416 on the way to the 401, about 40 minutes south of Ottawa.
I was diagnosed with IPF in March of 2013 and have been on Esbriet since about June of 2014. It has definitely slowed down the IPF progression. However, over the years, my activities and energies have slowed down. I did continue to travel and be active for the first couple of years. However, in 2016 after an exciting and exhausting cruise in the Baltic and visiting St Petersburg I ended up with a heart attack and required three Angiograms. I put the blame on the lungs not being able to supply my heart with oxygen. Or, maybe, I was just pushing myself too much. I did recover from my heart attack and the Ottawa Heart Institute did a great job on my arteries.. However, my stamina continue to decline and after spending the winter in Florida to avoid the cold, my regular breathing test indicated that my oxygen level where dropping, and when I did a test to determine if I would qualify for supplimentary oxygen, my oxygen levels fell below the 75 range…. so the next day, I was delivered supplimentary oxygen. I have a machine and two tanks which last about 2 hours and a 50 ft hose that lets me travel around most parts of the house.
As to your questions “Did you find Esbriet helped you? Are you still on it?” – yes Esbriet has helped and I believe has slowed down the progression of the scarring. I am on 9 caps per day.
Thanks again for the Oxygen thread and it was some help – what I need now is to determine if my supplier of gas oxygen can supply liquid oxygen and will it provide me with tanks that last longer. Also where are not it is covered by OHIP.
- 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 on Esbriet, I am now on Oxygen at the rate of 2.5 for period when I am active ( walking, talking, and moving around) Found that the time on oxygen has increased either because I am doing more activity or it takes more oxygen to do more.
- Have questions and interest in how best to travel with Oxygen. Does any one have liquid oxygen tanks that have a greater capacity over oxygen gas?
- looking for support groups in the Ottawa area – Does anyone know of a group?
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?