@lesley-scheerle
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Lesley Scheerle and
Jason Pilgrim are now friends 3 years, 11 months ago
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Lesley Scheerle posted an update 4 years, 1 month ago
@susan27 Hi Susan. I just read of your experience with drug induced rashes. You also mentioned being on Prednisone and soon will be on CellCept. l have been on Prednisone for many months now and it has helped a great deal. I was recently put on Imuran – immunosuppresant- and I reacted very badly after about two weeks. Vomiting, weakness, and…[Read more]
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Lesley Scheerle replied to the topic Is All Pulmonary Fibrosis Progressive in Nature? in the forum Diagnosis Information and General Questions 4 years, 2 months ago
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…[Read more]
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Lesley Scheerle replied to the topic Is All Pulmonary Fibrosis Progressive in Nature? in the forum Diagnosis Information and General Questions 4 years, 2 months ago
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…[Read more]
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Lesley Scheerle replied to the topic What I Didn't Know Following My IPF Diagnosis in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 years, 2 months ago
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…[Read more]
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Lesley Scheerle replied to the topic Is All Pulmonary Fibrosis Progressive in Nature? in the forum Diagnosis Information and General Questions 4 years, 2 months ago
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…[Read more]
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Lesley Scheerle replied to the topic Is All Pulmonary Fibrosis Progressive in Nature? in the forum Diagnosis Information and General Questions 4 years, 3 months ago
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…[Read more]
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Lesley Scheerle replied to the topic Introductions & Welcome! in the forum Using Our Forums 4 years, 4 months ago
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…[Read more]
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Lesley Scheerle replied to the topic Indigestion & Acid Reflux in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 years, 7 months ago
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…[Read more]
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Lesley Scheerle posted a new activity comment 4 years, 10 months ago
Hi Charlene: I’m really doing quite well, thanks. Hope you are too. I’m leaving for Florida for a week to visit my sister and won’t be taking my laptop, so won’t be in touch till after the 21st. My sister warns me that the weather is supposed to be cooler than normal, so hope it won’t affect me. Be in touch later. Lesley
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Wonderful to hear @lesley-scheerle! Have a great time in Florida 🙂
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Lesley Scheerle and
Aishia Moaishia are now friends 4 years, 10 months ago-
Hey @lesley-scheerle, was just thinking of you and wondering how you’re doing?
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Hi Charlene: I’m really doing quite well, thanks. Hope you are too. I’m leaving for Florida for a week to visit my sister and won’t be taking my laptop, so won’t be in touch till after the 21st. My sister warns me that the weather is supposed to be cooler than normal, so hope it won’t affect me. Be in touch later. Lesley
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Wonderful to hear @lesley-scheerle! Have a great time in Florida 🙂
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Lesley Scheerle posted a new activity comment 4 years, 10 months ago
Hi Jason: Love your bike! I was diagnosed last fall and so far, so good. How about you? Anything you want to ask or add the the forum? I’m quite new to it too. I live in Canada but am doing the Texas thing for the winter.
Please post your experiences and/or questions so we all can learn from each other. O.K.? Lesley -
Lesley Scheerle and
Alfred Arnold are now friends 4 years, 10 months ago
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Another member, I believe from Texas, mentioned stem cell treatment. Charlene can probably post an update if one is available.
As for the prostate cancer, I am on hormone therapy to keep the cancer cells at bay. I will have a follow up PSA soon to assess the treatment. -
http://www.xinhuanet.com/english/2018-02/23/c_136994654.htm
Reference to regeneration of lung tissue by Chinese scientists.
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Lesley Scheerle posted an update 4 years, 11 months ago
Hi Sharlene: You mentioned essential oils and vaseline use on cannulas. That they are not necessarily good for this use because they aren’t sterile and can cause problems. This is new information to me. Thank you for mentioning it. I’ll be going to visit my sister in Florida later this month and hope the climate and air there won’t be a problem.…[Read more]
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Hi Lesley,
Thanks so much for your note. Yes, I had to do some research about essential oil use on the plastic of our oxygen cannulas as well, I didn’t know if it was safe for not. Since the oils everyone should be using are pure oil and therapeutic grade, they have the ability to disintegrate plastic. I often put a drop of certain essential…[Read more]
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Lesley Scheerle posted a new activity comment 4 years, 11 months ago
Hi again Sharlene: I started smelling ‘smoke’ and sometimes ‘ozone’ when of course there was neither. This was well before diagnosed so I think it has more to do with sinus that anything else.
You also mentioned the problem of the horrible plastic smell of new cannulas. I don’t know what kind you use, but there silicone and acrylic ones. I…[Read more]-
Hi @lesley-scheerle, thanks for following up and sharing your comments, it is wonderful to hear from you as always. How is your week going?
I am interested in hearing from others if they have experienced an increase sense of smell, or smelling things that aren’t actually presented as well. I would imagine, as you say, it is sinus-related but I’d…[Read more]
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Lesley Scheerle started the topic Olfactory changes with IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 years, 11 months ago
Hi Sharlene: You asked if my sense of smell changed after diagnosis. No it happened about a year before. For anyone else with the same problem, go to https://www.verywell.com/disprders-of-olfaction-2488765
There it explains what causes it (to some extent) and what kinds there are. I often smell smoke – when there’s nothing there. I found my…[Read more]
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Lesley Scheerle posted an update 4 years, 11 months ago
@charlene-marshall Hi Charlene: You and Aishia both mentioned smelling things when there weren’t there. I have the same problem and mentioned it to my Dr. and all he said was “I’ve never heard of that before.” That was last summer. It’s still a problem because I smell smoke when there isn’t any. So I finally decided to do a little research myself…[Read more]
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Hi @lesley-scheerle, I hope you’re having a great day! This is fascinating to me, thank you so much for sharing what you found. It is amazing what we can find out when we take our health and advocacy into our own hands. Please do let us know what your Doctor says when you show him this article! @aishia-moaishia, isn’t this interesting? I’d love to…[Read more]
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Hi again Sharlene: I started smelling ‘smoke’ and sometimes ‘ozone’ when of course there was neither. This was well before diagnosed so I think it has more to do with sinus that anything else.
You also mentioned the problem of the horrible plastic smell of new cannulas. I don’t know what kind you use, but there silicone and acrylic ones. I…[Read more]-
Hi @lesley-scheerle, thanks for following up and sharing your comments, it is wonderful to hear from you as always. How is your week going?
I am interested in hearing from others if they have experienced an increase sense of smell, or smelling things that aren’t actually presented as well. I would imagine, as you say, it is sinus-related but I’d…[Read more]
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Lesley Scheerle posted an update 4 years, 11 months ago
Hi Charlene: I think I goofed mentioning Amazon for Wedge Pillows. It was supposed to be Wal- Mart. That’s where my hubby got mine for about $20.00 U.S. Also on another topic, I just came across a good Youtube blurb by Chanel White called Oxygen Cannula Review – Breath Easy Not Ugly. It is quite informative. She also did another one called…[Read more]
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Lesley Scheerle replied to the topic Why You Should Consider Joining Our Online Forum in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 years, 11 months ago
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…[Read more]
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Lesley Scheerle posted an update 4 years, 11 months ago
@charlene-marshall Hi Charlene; I just posted on the other forum. Guess I have to try to figure out which is which. Which one would you suggest is best for general communicating with everyone? I mentioned previously about excessive sweating even when doing normal daily living. I’d love it if I could get answers from anyone else having this…[Read more]
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Hi @lesley-scheerle, I’m so glad you’re getting the hang of the forums! 🙂
I designed the forums to be grouped based on factors specific to patients, or roles of those in accessing this website. For example, I tried to make a group for Canadians with PF, Caregivers/Spouses, patients under 40, over 50, etc. Then someone did a really great job at…[Read more]
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