[Joyce Douglas]

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 can definitely tell when my oxygen needs to be increased to 3l up from 2. I also do need it to be on 3l both on my POC and the home concentrator. I wasn’t aware that the levels of oxygen received were different between the two. Maybe I need to reconsider how much I need when I walk any distance. I do find that I just cannot seem to remember to breathe in through my nose. With my mouth open I get more air, but it doesn’t help the lungs if the aveoli don’t receive the oxygen from my mouth’s air! Why would I not remember such an important step. Also, I do completely forget to take my Esbriet if they are not right beside me! This is a very important step in keeping the fibrosis at bay…I think my brain fog is beginning to settle in to a type of pea soup fog (like in London, Eng.). One day when I wasn’t feeling well and spent most of it lying down on the bed resting I also forgot to take my medications for other health help. I have changed from pill bottles to having the pharmacy put them in a dose pack. That has helped some, but still I need a reminder from my husband to ‘take the pills’.
I haven’t been able to multi-task for some time now and don’t even try it anymore. Good for you for keeping up the challenge. Very proud of your persistence and your determination. Great going there gal.

[Joyce Douglas]

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 later am still taking it daily.  I do not have too many disagreeable side effects from the Esbriet that I am aware of, but do have some stomach issues of nausea at times if my doses are too close together.  For ex: bkft at 8:30am,   lunch at 12:00 pm and supper at 5:30 to 6:00 pm. If they get any closer together then I will sometimes have nausea for a while and need to have a small bit of food ex: a slice of bread, graham cracker or fruit.  A drink will cause the nausea to be worse, so I drink water and tea with  my meals but not often in the afternoon, until my supper when I then have my tea with supper.

 

[Joyce Douglas]

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.

 

 

[Joyce Douglas]

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 of having a terminal illness). Some give us good hints on how we can overcome something, others give us a boost of self confidence because we are able to do more than we thought we could. Others give us a chance to help them with hints on how to take their medication, control coughing and deal with the mucous. Every time we can help others we feel good and feeling good is how the dopamine is made in our brain. Too bad we can’t just turn on a tap and get a good dose of it isn’t it! Oh well, just take a few deep breaths (yeah, like we could do that!!) and pat ourselves on the back and say – Get at it gal, you know you are doing great. You two are such a great inspiration for others and we do appreciate each and every post you put on this Forum Charlene. You also Sandra. Love you both. One day at a time is all we need to do.
Cheers, Joyce D.

[Joyce Douglas]

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.

[Joyce Douglas]

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.

[Joyce Douglas]

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.

[Joyce Douglas]

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 6th, 2017, I received a phone call from one of the Nurses in charge of the Inspiration Program out of Ottawa. I have spoken to several nurses over the year.  However, at first I received a call from the nurse, about three times a week after receiving the initial package of Esbriet. They wanted to be certain I knew of the proper way to take the meds.  Also, they wanted to know of ‘any’ side effects that I was experiencing and how I was treating them.  I had some of the usual initial ones, which did eventually go away – headache, stomach ache, stiffness in joints and muscles, etc.  None of my side effects were bad enough to cause me to want to stop the meds.  The phone # of the Inspiration Program is: 905-444-4444. This put me in touch with the current Nurse in charge and she/he was able to answer my questions, provide information as to if this was normal, etc.  They were extremely caring and supportive and told me to phone at any time of night or day and they would speak with me.  I do not know if others receiving this Esbriet medication were on the Program or not. I had some questions about stopping my ‘Homeopathic Medications’ and my other Over the Country medications.  We did decide that I should stop them in order to give the Esbriet the best chance of working it’s best on my lungs and fibrosis.

 

[Joyce Douglas]

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, but it hasn’t decreased the muscle deterioration that is happening.  I find I do not have much muscle tone left, and very little energy.  I know that since I was one of the thousands of female smokers back in the 50’s and 60’s, continuing on to the early 80’s. I did expect that I would eventually have to pay for my foolishness and stubbornness.  Well, I didn’t dream it would be this illness that I would get, but since I got it I have used all my efforts to keep going and not let it get me.  Taking part in the PF news forums and reading from other sufferers is amazingly helpful.  Thank you everyone for your part.

[Joyce Douglas]

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 she did all she was able to do and suggested I talk to a Dr. specializing in hip replacement, but my IPF would probably prevent surgery due to my bad lungs.  However, I went back to my Chiropractor and he has ‘finally’ got my hip to stop hurting and the Tylenol is now just very occasional.   I am happy to say I may only have it one or twice a day – when needed. However, I have found that a glass of wine at bedtime helps me sleep better. I’m not sure how my Dr. will feel about this, so will discuss it in Dec. when I next see him.

[Joyce Douglas]

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 car door and shut the door – she said it would snap like a piece of uncooked spaghetti….so Warning:  Do not do this. Keep it warm. I also carry an extra tube and cannula just in case of an accident.  I keep them in a warm place also so they would be ready to use if I needed them.  It really is crappy that we have to be so super cautious after years of just putting on a coat and boots and going out the door.  Oh well, at least the good thing is we are still ‘able’ to go outside!  We have to be thankful for small things.

[Joyce Douglas]

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 up and down. Causes some concern but now I find it is mostly due to my shortness of oxygen. I have a problem of remembering to breathe through my nose/nasal canula so makes my O2 Level low (as low as 74) which I then have to work at to increase it. I am normally on 3 litres at home and at 4 when I am walking or working. Still my O2 level plummet. My lungs just do not work well anymore. After I take my meds and get my O2 increased then life becomes normal again. Happens every morning.

[Joyce Douglas]

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 ago. Public Health records show we had a big shot so don’t require the second shot. This past week our Medical Clinic phoned us with the upcoming dates of their Flu Clinic and asked/suggested we take part and make an app’t., which we did and we will be part of the ‘done’ seniors after Oct. 17th. Good to have it over with. When we attended the Respiratory Rehabilitation part of the IPF program last winter the Lung Specialist told us there were nurses in the gymnasium where we usually did our weekly exercises so we could/aka should go right over and get our yearly Flu Shot, which we all did. We just never thought about it – went over and it was done. No flu last winter. That is a great relief for suffers of IPF. We DO NO NEED TO GET THE FLU with our lungs not working properly. So, see you again after we’ve rec’d the shots.

[Joyce Douglas]

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.

[Joyce Douglas]

Thanks Rick. Appreciate the clarificTion.

[Joyce Douglas]

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 Respiratory Specialist in June. I will keep in touch. Have learned a lot of good skills from this Forum. An excellent site for pertinent information.

[Joyce Douglas]

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.

[Joyce Douglas]

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 count, so another X-Ray of lungs and Cat Scan showed it was fluid. Lasix, the water pill gave me exercise and lowered the fluid on the lung. I feel so much better. Can actually do some minor house work.

[Joyce Douglas]

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.

[Joyce Douglas]

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 when I used them.  If I had an oximeter back then I probably had low O2 stats then also.  I was first notified that my O2 stats were really down – at 69 on night after a trip into and home from Winnipeg – a long day.  The nurse doing the stats suggested I go down to ER.  I waited and went down the next morning and was kept in hospital for 4 days.  With complete bed rest and on O2 I recovered fairly well so was sent home.  A few days later I again had difficulty with aching muscles and throbbing so I stopped into the Dr.’s office and his nurse called in the ‘Walk-In Dr.’ and told him that they weren’t looking deep enough as I looked way too well.  My O2 was 72 at the time.  I was made to lie down, an ambulance was called and I have been on O2 every since 24/7.  I was diagnosed on May 6th, 2017 and my anniversary is today. I just remembered that!  A Respiratory Specialist was called in and I was put through many tests, and blood tests,  6 min. walking test (the tester had to keep raising the O2 so I could finish).  I was diagnosed with Advanced IPF, as well as COPD and Emphsyema.  I spent 12 days in hospital on Oxygen and many more tests.  Finally got home, was referred to the Respiratory Rehabilitation Clinic that was being presented in the Hospital (free with referral) and have continued on from there.

[Joyce Douglas]

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 done also.  I am going to see my GP Dr. next week and will tell him of the problems of the rapid depletion of the O2 just doing ordinary things in my home.  I monitor it with the Oximeter and often it does go down to 80 or 84, which tells me to sit down and recover the O2 and then retry to finish the chore. I can feel the lower O2 just by having my shoulders and arms ache, as well as legs, if I am walking. This tells me to turn up the O2 and/or sit down and recover.  Purse breathing does help, but not very quickly.  I also have foggy thinking and brain at times when the O2 is lower. At times I am unable to really relax to get to sleep. Not sure what the cause of that is as I was always a good sound sleeper.  Still dream lots though and am enjoying the dreams…quite a nice change from the poor TV programs, ha ha.  But, yes, the brain does seem foggier and though I do solve daily Crossword puzzles and use the Word Find books I still find there are fuzzy times when I am glad I’m not having to take any tests or write exams.  Of course, at almost 80, I shouldn’t have to take them again!

 

 

 

[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 the first week, and being sure to take them with food.  Otherwise there could be stomach issues. (I don’t need to be told that twice).  I never had stomach issues and that may be why…  I am one of those people who could easily come down with some or all of the contraindications that they warn about, so I didn’t bother to read the pages of things that COULD happen while taking Esbriet and decided to just mark down those situations that I did have happen.  Other than some indigestion if and when I took the three pills (beginning the 3rd week) too close together without food in between then I had suffered from that. Not often and tums and rolaids managed to keep me well.  I found a hot drink didn’t really help a lot, better to have a cold one.  If I took the hot drink too close after the pill then it kind of melted the capsule and it did cause some indigestion. Not a cold drink though.  Other than that no real problems.   I have even had a rum and coke some evenings, or a glass of wine.  Not a problem with that either, except my ears turn bright red and I have a bit of {global warming} flushing. That sometimes happens after I get into bed also, but only after a glass of wine or r & c.  I hope you have a good time and feeling that the Esbriet helps you.  I believe it has helped me.

 

[Joyce Douglas]

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 much I’ll need so I can judge ahead of time.  I try to bull through but that isn’t really wise I know. Figure it out, or stop and try another way would be better.   Last night during the night I had an anxiety time come over me and a feeling of impending doom. Hopefully I will be fine tonight. Have to ask him if I can take a anti-anxiety med then or not.  He isn’t a psychiatrist though so he may not even know. G.P.’s rarely do much with psych meds.  However, that was my first time so hopefully I can forgo that for tonight.  Do have a good rest yourself.  I am amazed that you are so in touch with the Forum folk and answer us so quickly. Thank you for your consistent ‘being there’ for us.

[Joyce Douglas]

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 Physicians office the idea that the Dr.s weren’t looking deep enough. A Dr listened to my chest and hearing a ‘Velcro open/close sound’ said,  he was sending me to the hospital on oxygen. I have been on it ever since.  Thankfully. I can breath much better now, but still find that my blood oxygen level dips very fast. Just a walk to the bedroom to pick up something and return to the kitchen area makes it dip.  If I just sit and don’t do ‘anything’ the rate stays about 92ish, if I walk and perform any physical activity along with that it dips to 80 or 77.  It used to recover quickly but I’ve noticed that it isn’t doing the same speedy recovery as it had been doing.  I am very tired and just cannot do anything physical without experiencing the lowering of oxygen in the blood.