Forum Replies Created

  • lesley-scheerle

    Member
    November 10, 2018 at 12:15 pm in reply to: Is All Pulmonary Fibrosis Progressive in Nature?

    Hi Charlene: Yes, it’s darn cold here. We live on Lake Winnipeg (the 10th largest freshwater lake in the world) and already the wind is sending up ice to coat the rocky shoreline. Nasty, nasty. But the cold weather brings on a whole new set of things to get used to – trying to keep the line from the 02 tank to my nose warm. Not too easy. I’ve read that you should run the line underneath your clothes to use your body heat for warmth, but in trying that I found it really awkward. Any helpful suggestions from cold climate people? Maybe this should be under a different topic in the forums?      Thanks, Lesley

  • lesley-scheerle

    Member
    November 9, 2018 at 12:48 pm in reply to: Is All Pulmonary Fibrosis Progressive in Nature?

    Charlene: I’m sad to see you had a bad day recently, but we all know it’s bound to happen every now and again.

    Re: CelCept.  According to the info. insert that came in the box of meds, it’s supposed to be taken in conjunction with Prednisone. no problem there, as I’m on 10mgs. daily. I just hope I’ll tolerate’ it as well as some others on this forum.

    I won’t start till my hubby is back from Edmonton on the 27th, leaving plenty of time for the Imuran to clear my system. It’s always nice to hear from you.   Lesley

     

  • lesley-scheerle

    Member
    November 6, 2018 at 1:20 pm in reply to: What I Didn’t Know Following My IPF Diagnosis

    Hi Sheila: I can really relate to your feeling of being cut off because of distance. I’m one and half hours from the city, and live in cottage country-not many around in winter. I’m finding that because of the risk of infection I am drawing away from socializing. I’m not comfortable going shopping (thank goodness my husband is so capable) or especially to the nearest hospital for blood tests. I’m becoming a bit of a germ-a-fobe. I have to ask friends if they’ve recently had, or have a cold or the flu before seeing them, or having them over. It feels so invasive. Fortunately they now understand why. I’m even afraid to babysit my grandchildren! Such a bummer. Again, I thank my lucky stars for my husband who loves to babysit at their house.  I can really understand how this disease isolates the sufferers. I hope your isolation won’t cause depression, as many of us tend to fall prey to it.    Many Good wishes, Lesley

     

  • lesley-scheerle

    Member
    November 6, 2018 at 12:49 pm in reply to: Is All Pulmonary Fibrosis Progressive in Nature?

    Hi Charlene:

    I’m just so thankful for all your efforts re:IPF forums , questions and answers. You asked if I was on any IPF medications, no I was not. (thank goodness!) I was put on prednisone and am still on it. As mentioned before, I was put on Imuran @ 1/2 tab daily for two weeks, then upped to One tab daily for two weeks, then increased by 1/2 tab bi-weekly till reaching 3 tabs daily. I seemed to tolerate the 1/2 tab for two weeks, but ran into trouble on the third day of One tab. Lots of nausea  vomiting, dizziness, and to top it all off, Hallucinations. I thought day was night – really weird! Needless to say I stopped it and allowing for two weeks for it all to clear from my system I’ll be starting Celcept. I so hope I’ll be able to tolerate it.

    And the game goes on ——-  Lesley

  • lesley-scheerle

    Member
    October 30, 2018 at 11:24 am in reply to: Is All Pulmonary Fibrosis Progressive in Nature?

    Hi Terry and all others. I’ve been doing a lot of research for the past year on the differences between IPF and HP and NSIP. I was diagnosed with IPF because on my first HRCT scan the radiologist suspected early signs of honeycombing. However, subsequent scans showed no honeycombing, but a lot of ‘ground glass opacities in both lungs and all lobes. Also the fibrosis appeared to be mostly in the upper lungs. Since in IPF usually starts in the lower lungs, not the  upper, and ground glass opacities are mostly inconsistant with IPF but very consistant with HP and NSIP  my diagnosis has been changed to either Hypersensitivity Pneumonitis, or Non Specific Interstitial Pneumonitis. I have been on prednisone for a few months and found it really helped me breath more deeply.  Continuing on with Prednisone, my pulmonogist has recently added Imuran – starting at 1/2 a tab. daily and increasing it by 1/2 tab. daily, bi-weekly. And of course going for blood tests bi-weekly before increasing each dose. I hope I can tolorate it. So far, not so good. Hope this helps. Lesley

  • lesley-scheerle

    Member
    September 25, 2018 at 12:35 pm in reply to: Introductions & Welcome!

    Hi Patricia: I’m with you on this. I too have the hot-cold demon. I wear an extra topper which I probably put on and off several times a day. Such a drag! And, like you my feet feel like they’re in a freezer – even when I’m boiling. I was started on prednisone 50mg. and titrated down to 10mg. over a period of nine weeks.  I’m still on 10mg. The only side effect I experienced was shaking hands, and that still continues on the lower dose. After my next 6min. walk test, both with and without oxygen, my Dr. has said he might be putting me on a different drug. I sure hope the shakes will stop then because at present my writing is so squiggily I hardly recognize it. It’s even being a big pain in the neck using the laptop keyboard! Oh well, things could be much worse as all our fellow IPF’ers know.   Wishing for a miracle, Lesley

     

     

     

  • lesley-scheerle

    Member
    June 14, 2018 at 11:07 am in reply to: Indigestion & Acid Reflux

    Hi to all acid reflux suffers. It’s been my curse for so many years I can hardly count back that far. I too don’t have anything to eat or drink after 8p.m. But I have one exception. I have a full glass of water before bedtime to hopefully dilute the acid in my stomach. It seems to work well. Another thing I have done is buy a “WEDGE PILLOW” for bedtime. I even put another regular pillow on top of this one to be as elevated as possible. It takes some getting used to, but helps a lot. Lesley

  • lesley-scheerle

    Member
    February 22, 2018 at 3:41 pm in reply to: Why You Should Consider Joining Our Online Forum

    Charlene suggested I post my ‘sweating ‘ problem in a general forum – I hope this is the right one. About 8 months before my diagnosis I began to notice I was sweating a lot just from ordinary daily living. My sister who is a nurse said it reminded her of of the Cystic Fibrosis kids who sweated just from the effort required to breath.  I’m not that bad yet, but it is a problem. Anyone out there have the same problem? I’d love to hear that I’m not the only one.  Lesley

  • lesley-scheerle

    Member
    February 21, 2018 at 7:40 pm in reply to: Living with IPF vs When Diagnosed

    Hi Aishia: I was surprised by your description of your sinus troubles – only because I’ve been smelling odours that aren’t there!  I often smell smoke that doesn’t exist and sometimes it smells like ozone. Now I wonder if it may be sinus related. Hmmmmm.  Last fall I mentioned it to my G.P. and he replied ” I’ve never heard of that before.” End of inquiry.

    It’s something I’ll keep in mind to ask about seeing a ENT at my next Dr’s appointment. Thanks for sharing  that info.    Lesley

  • lesley-scheerle

    Member
    February 21, 2018 at 5:07 pm in reply to: Networking with other Canadian patients

    Hi Charlene: You mentioned you were improperly diagnosed with Asthma when it was an allergy problem. I guess I was lucky in that with me it was just allergies. I think the fact that it would become a problem every spring is what pointed to allergies instead of asthma.

    I’m happy to say that today seems much better than yesterday. As we all know, no two days are alike.

    The wedge pillow I mentioned is shaped just like it says – a great big foam wedge. Higher at the top and gently sloped to the bottom. Amazon has lots of them. Just type in ‘wedge pillow’. Since I’d never tried one before, I chose the cheapy (Scottish, don’tcha know!). It is really better for me than two pillows that put my neck at an uncomfortable angle. I use the wedge with one pillow on top and am a side sleeper.  Hope this helps.  Lesley

     

  • lesley-scheerle

    Member
    February 19, 2018 at 10:16 pm in reply to: Networking with other Canadian patients

    Hi Charlene: I was newly diagnosed with IPF in Oct. of 17. I’m from cottage country on lake Manitoba so I know all about cold weather. You mentioned the warmer temps. bothering you. I worry about the effect of Snow Mould in the spring. We usually have lots.

    I got my diagnosis just a couple of days before we were due to leave Canada for out winter home in the U.S. My pulmonologist said he couldn’t start me on any meds if he couldn’t do blood tests. But away we went anyway. Now I’m wondering if it was the right thing to do. I’ve had one bout of ‘Bronchitis?’ so far this year and I feel that it’ s made things worse. I can hardly wait to get back home and have my next high resolution C.T. so I can see if there’s been much change in the last 6 months. It’s all so new to me and of course frightening. I’ve been scouring the internet for information and have found a lot. But it’s still a shock.

    It’s one and a half hours from home to the city and I understand there will be lots of appointments etc. Do you know if there’s an IPF support group in Wpg?  Thanks for setting up this forum so we can all ask and hopefully answer lots of questions.      Lesley