Joyce Douglas

Hi Shaw.  Just a quick note on my experiences on taking Esbriet.  I think that there was a tremendous amount of support from an organization called ‘Inspiration’, based out of Ottawa, Canada for we Canadians.  The nurses in the program were sure to phone me and talk me through how to begin taking the medication, one pill – three times a day for th…[Read more]

I agree that it is exhausting having the oxygen go so low.  Just have to get my Dr. to cue into this and to show him in his office by the oxyimeter next week. Don’t know what he can do though.  I found today by turning up the rate to 4l per min I did better, but when I sit still I don’t require that much. It is a hunt and seek, try and guess how m…[Read more]

Hi Charlene.  Yes, I believe it was because of my aching joints/muscle pain, etc. as well as severe shortness of breath that I ffinally was able to convince the Dr. that I was not getting diagnosed properly.  However, the real cincher in the case was my severe lack of oxygen in my blood – at a 69 and then a 72 low giving the Nurse in the P…[Read more]

Hello, yes, I am living with Idiopathic Pulmonary Fibrosis. I was diagnosed almost a year ago, on May 6th, 2017. I have been taking the medication ‘Esbriet’ now since June lst, 2017.  I have had a few of the side effects but not to the extent that I had to discontinue taking the medication. I believe it has kept the fibrosing from getting worse,…[Read more]

Yes, do keep in touch and let me know how it goes for you.  I just did a Public Speaking bit for Manitoba Lung Assoc. at their Respiratory Conference for Health Providers.  It was on ‘A patient’s words on how this disease has impacted their life.’   I really enjoyed doing it and certainly enjoyed all the other speakers at the Conference also.  App…[Read more]

No problem Charlene.  Happy to share if it can be of help.  I certainly have made use of several hints/suggestions others have given.  eg: hooking hose over the top of the bed rather than the foot is so much easier.  Decided this morning as I was taking my shower that the hose OVER the curtain rod was great, also could hook it on the shower cad…[Read more]

Hi Dianne.   Yes, I know how overwhelmed one can be with more than one health issue that can cause other problems to surface that we didn’t know we had.  I suppose when we think of it, when the body has a weakened condition and low immune system then we do get more new illnesses.  However, like you Dianne, I find my body is having old issues cr…[Read more]

Hi to Sheila,   I know what you are speaking of  acid reflux.  I have to eat a Tums or Rolaids often just to calm my stomach due to my Esbriet tablets. They are known for upsetting the stomach or digestion.  However, if I remember to take them after eating a bit of food, then taking one pill, then about half way through my meal take another pil…[Read more]

No, I never have tried it.  Know very little about it.  Seems like I should see what it is all about and if it is a possible thing I could use.  Am doing well with the home system and portable unit I have (Inogen One) so never thought any more about it.

Hi Kim.  Yes. I do use supplemental oxygen 24/7 and at 2 l. setting. If I go walking I need to turn it up to 3l.  My main problem with the hose is that I keep getting it tangled up and had to keep untwisting it. However, one kind individual suggested that I find the joiners that swivel and that has made life so much easier. My oxygen provider h…[Read more]

Hi Charlene.  I will give the DuTerra a try for sure. Like to be pain free when and if I can. Thanks.

Hi to Chrisine Bruyere.   I read with interest that you were diagnosed with PF 10 yrs. ago.  I had never heard of it until last year when I was diagnosed.  It seems to me that you have managed fairly well over the past while until your recent problem with the CPAP machine.  We have a friend who was diagnosed with a fibrosing of his lungs who als…[Read more]

Hi Charlene,  I have enjoyed reading your and other participants views re CBD oil.  I was told to take 20 drops under my tongue twice a day and that is what I did.  As I mentioned I did find it helped me, but was told to not use it as my lungs may become too relaxed.  I am wondering if I was taking too much to begin with?  I read that Chuck was…[Read more]

It’s me again Charlene,  Sorry I didn’t complete my answer re when the pain occurs.  My muscles do not like me to do any amount of walking as that starts the pain in the hips area and if I stand for a while my back now aches as well.  It appears that my muscles are not receiving the amount of oxygen required to allow them to work and they send me…[Read more]

Hi Charlene,  re the topical creams to relieve pain from sore muscles and cramping…I have used Voltaren when I had a fall and that really helped my sore muscles (also ribs as I managed to land on my portable oxygenator! – yeah, I know very clumsy).  I had not used it prior to this winter but I found it comforting and took away the pain to a…[Read more]

Hi Charlene.  I have tried it. It made me feel very peaceful and relaxed.  However, my friend who is in the medical field, has stated that I need my lungs to be tough and also ready to fight – not relaxed.  Hope you have better luck with it. As I said, I did feel really good, but coughed a lot and was somewhat short of breath and puffing mo…[Read more]

I have been having some (actually a lot) of muscle pain and some cramping.  I asked my Dr. re this and he didn’t give me an answer. It is so nice to know that I’m not the only one.  The reason I believe is that the muscles don’t receive enough oxygen and then they begin to ache until the build up of oxygen reaches them.  Or, until the pain re…[Read more]

Hello, from Joyce.   I haven’t tried to clean litter boxes since I have been diagnosed with IPF, but I know I would find it difficult. The odor cuts my breath quite badly and though I didn’t find the dust a problem, I have not done any cleaning for about 2 years.  I was diagnosed a year ago this May. However, I know that I did have issues that w…[Read more]