I was not given any instructions on drinking a glass of wine or a rum and coke either.  My Dr. asked how much I drank and I said about 3 drinks a week and he wasn’t concerned about that.  However, I developed a bad hip and have been taking Extra Strength Tylenol 2 or 3 times a day to keep the pain at bay. I visited Physio to get help with it and… Read more

Thank you Martha for the suggestions.  I know they are affective as I did use some of them last winter.  We live in Manitoba, Canada where it gets to be -30C or -35F and the tubing and cannula can actually harden to the state of being stiff and almost solid – unbendable.  I asked one tubing wearer what would happen if I caught the tubing in the… Read more

Hi Steve. I was also hospitalized for 4.5 days with AFib (finally diagnosed) and the Dr. have had quite a time deciding which medication to put me on that won’t affect my Esbriet or other meds. However, they do have me on one that seems to be working. When I first get up I find my rate is anywhere from 135 down to 68 or near there and it jumps… Read more

Hi. My husband and I have become flu shot customers for the past almost 22 yrs. We began when my mother was a patient in the hospital because we didn’t want to bring anything in from the outside world to make her more ill. We have rarely not taken the flu shot and it is not a big deal for us. We also had the pneumonia shot, about 12+ years… Read more

Hi Charlene. It has been a while since I was in touch. Well, I made it to our 60th wedding Anniversary and had a very nice visit with family and a few friends. It wasn’t a big party, just a celebration of life together over the past 60 years. One of my goals has been reached and I am so happy.
Regarding the brain fog. Oh yes, I… Read more

Hello Charlene.  In response to your questions on today’s posting,  I was diagnosed on one day and immediately my Dr.

who is in charge of my IPF, told me he was putting me on the Esbriet.  He also said that I had severe IPF and wouldn’t be able to have a lung transplant.  I received my first box of Esbriet about a month later, and 16 months… Read more

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… Read more

Hello Charlene and Sandra. I know of what you are speaking about. It seems so hard to just feel normal never mind having to explain it to others. I too feel good when alone, especially when I need to cough some or just veg out. I
do enjoy reading the posts from other IPF survivors (I call us ALL survivors, because we are surviving in spite… Read more

Hi Charlene. I definitely will let you know his feelings on the subject. He is well known in the area as the Dr who gets good results so I believe he is a revolutionary inIPF treatments.

Thanks Rick. Appreciate the clarificTion.

Hi Charlene. I was referring to the ‘new’ Super Pill. I am on lasix daily and so far it has been keeping the fluid down in my lungs. I may have had a medication problem due to not understanding the Dr.s orders. Now it appears to be straightened out. I see my reg. Dr. On Monday so won’t find out about the Super Pill till I see my… Read more

Donald really sounds very positive of the new Esbriet!! I am going to talk it over with my Respiratory Physician for sure. Sounds very positive. Thanks, Donald. My latest stint in hospital gives me the urge to keep on trying harder.

Hi Charlene. My Dr. Has spoken of the new ‘Super Pill’ he had information on. He hasn’t suggested I go on it yet, but unless there were worse side effects I think I would give it a try for sure. I just was released from a hospital stay of 4 1/2 day stay – fluid on my lungs. It was thought I had pneumonia but there was no raised white cell… Read more

Hello again Charlene. When I was diagnosed a year ago the Dr. stated that my IPF was advanced. I haven’t been told if he will be doing another lung function test soon. Will ask him at my next visit. Don’t really know where I am at in the stages.

Ok Charlene will keep you posted. My body isn’t doing great. I am having A Fib problems now. Don’t have High blood pressure but was put on the pills. The rate still fluctuates a lot but recovers more quickly. Takes 2 wks I am t8ld for themnto really work well…so far its only been 4 days.

I know George. Thanks for the info. Even my Dr. wanted me to cut back on my depression and anti-anxiety meds. I did cut back, but it didn’t help my breathing any, also my anxiety became worse. Think I’ll give the CBD oil another try and see if it helps, or I’ll go back to the former med dose. I know my lungs are working hard now anyway.

You are saying it has helped your IPF? I was told my kungs would relaxed and they needed to be ready to fight the PF. Was that not really correct? If not I’ll go back on it.

Yes Charlene. That was exactly how it came about. My disappearing muscle tone and strength had me asking my Dr. for the reasons why this was happening when I was already attending Curves 2 or 3 times some weeks.  He had no answer except to put me on another puffer, which didn’t do anything to help the muscles.  They would just throb and ache… Read more

Hi Charlene.  Thank you for your ideas.  I have been turning up my O2 from 2l to 3l when I am out of the Apt. and also have found if I am walking then I need 4l.  Of course the O2 on the POL depletes more rapidly, but I can charge the POL in my car and am able to take along an electrical cord to plug it into any electrical plugin, which I have… Read more

Hi Charlene.  This post is in response to your question as to how I found out about the Inspiration Program from Ottawa.

My Dr. (B. Bookatz) in Brandon MB, registered me to begin the medication – Esbriet starting in June of 2017.  Just shortly after I got back home from the initial hospital stay where and when I was diagnosed with IPF on May… Read more

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… 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… 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… 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… 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. … 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… Read more

Hi Charlene;    I am still keeping it at 4 x a day until 2 wks are past then will taper off.  If I find the breath isn’t as easy to take with it only 3 x or back to 2 x then I’ll return to 4. I was given an ‘OptiChamber Diamond’ RESPIRONICS FROM Phillips that you fit the inhaler into one end, shake the inhaler & chamber unit, then uncap the… Read more

Hello Charlene.  I have been using Inhalers for the past year. Two different ones….Atrovent (green cap) and Symbicort turbuhaler.  I had a bad cough for about 4 wks and it wouldn’t clear up. My Dr. prescribed an anti-biotic and that helped but the cough still remained.  He then ordered me to use the inhaler ‘Atrovent’ 4 times a day rather… Read more

Hi Shaw. I also was very nervous about starting the Esbriet since my Dr. had told me it would give some people stomach issues, and having to be careful to coverup with sun tan lotion on uncovered skin out in the sun. However, I was also bound and determined that I was going to take this medication as it was the only one recommended for my IPF.… Read more

Hello Charlene. I grew up on a farm in the 40 and 50’s. Then I moved to the city to work and have lived in that environment for several years, returning to the farm again in the mid 70’s. We lived on the farm for 35 years finally retiring into the city in 2001. I didn’t notice any environmental problems or have any breathing difficulties… Read more