Marianne

Thanks for ordering it @marianne, I look forward to hearing your thoughts on it when you receive it. Not sure why it took so long to ship – third parties handle that not us as authors – but glad it is on its way to you now.
Take care,
Charlene.

Thanks for sharing @marianne – wonderful advice! I’m so glad you finally have the POC in place the doctor ordered. That’s great to hear, and I hope you’re doing as well possible 🙂 Nice to hear from you!
Charlene.

Hi @marianne,

That is so brutal, I’m so sorry you’re having these struggles with the oxygen company and POCs. Unfortunately, I’ve heard of this happening often for patients and it’s not fair. POCs are expensive here too, I ended up just buying one out of pocket because I was so irritated dealing with insurance coverage, prescriptions, etc. I hope…[Read more]

Hi @marianne, Thanks for sharing. I definitely understand the hesitation to move in with your son and his young family. Especially since they have pets–you don’t want to exacerbate your symptoms with allergens!

My grandma lived in an Eskaton for many years, and she started out in an apartment that was totally independent. I would call it more of…[Read more]

Hi @marianne

Thank you for the update on your POC. Unbelievable that the oxygen supply company had to “agree” with the Pulmonary doctor that you would qualify for a POC – very frustrating. Fingers crossed you’ve received it and the adjustment to the device is going well. I use my POC most often, so if you have any questions, please don’t hesitate…[Read more]

Hi @samgilmore

I hope @marianne‘s suggestion might be of benefit to you?

I am with you Marianne and hate my 6-minute-walk test and PFTs. Sometimes I feel anxious about running out of 02 when I complete them, and sometimes I am nervous about the test results…. sometimes both! Thanks for writing and providing this suggestion to Sam.
Kind regards,
Char.

Hi @marianne,

Thank you for the update, but so sorry you’re dealing with some difficulties by the oxygen company. Unfortunately, I’ve heard of this where I live too and sometimes it needs to be a very stern conversation about who has the credentials to prescribe 02, which inevitably ends with: not the oxygen supplier. Hopefully things are…[Read more]

Great suggestion @christie-patient.

@marianne, more information on the Pulmonary Fibrosis Association can be found in this post here: https://pulmonaryfibrosisnews.com/forums/forums/topic/pulmonary-fibrosis-association-providing-02-to-patients-in-need/ in addition to the website Christie provided 🙂

@marianne Has Charlene told you about the PF Association? They do work in the US to help get people the oxygen prescribed by their doctors. Sadly, it sounds like the problem you are experiencing with delivery might not be so uncommon. I think they have a great mission, but I suspect the organization might have been hit pretty hard by covid layoffs…[Read more]

Thanks for sharing @marianne! It always cheers me up to hear that people are getting vaccinated 🙂 And I am very glad that you get to enjoy nice weather with an old friend. It’s been so hard to be apart from friends these many months, and it will feel great to have face-to-face time.

Thanks for sharing this update with us @marianne.

I hope you can continue to manage the shortness of breath so you can spend time with your grandson. It is tough to manage, but hang in there and don’t be afraid to use that 02. I was so reluctant to it at first but it really did help me feel better physically: less tired, less short of breath,…[Read more]

Hi @marianne

Good question! A lot of people struggle with this, and I think have chatted about some solutions in the past on here if I remember correctly. Check out this thread, there might be some helpful information here: https://pulmonaryfibrosisnews.com/forums/forums/topic/skin-irritations-caused-oxygen-cannulas/

Otherwise in the top…[Read more]

Hey @marianne, oximeters can be pretty finicky, especially if you aren’t sitting still, or are cold. I used to be an MA at a pain clinic and we had a patient that regularly got flagged for pulmonary/cardiac concerns because they were severely underweight and could never get warm. Their O2 readings were perfect once we could warm up their hands but…[Read more]

Hi @marianne,

Thanks so much for this update, and glad to hear your doctor doesn’t feel you need 02 at night yet. I hope that remains for a long time for you 🙂 Kudos to you for going walking in this nice weather, not as easy as one might think it is with supplemental 02. Keep an eye on those saturations while you’re walking and make sure to…[Read more]

Hi @marianne

Thank you for the update! Unfortunately, hearing that oxygen suppliers delivered the wrong item is something I’ve heard several times. Nothing against them, but it sounds like it happens often so I’m glad your doctor was able to advocate and get you a POC. For the little tanks you mentioned you’re getting, I enjoy having those on my…[Read more]

Hi @marianne,

Thank you so much for circling back to let us know how your appointment went. I was thinking of you! Being told you need supplemental oxygen is hard to digest, so I’m glad to hear that decision was made together with you and the doctor. It’s the same here as well unfortunately re: liquid oxygen… it’s very hard to get, and sounds…[Read more]

Thanks for circling back to let us know @marianne. I’ll be thinking of you on Friday and hope the appointment goes as well as possible. Please keep us posted if you feel up to it!
Take care,
Charlene.

Hi @marianne

Thanks for sharing this with us and kudos to you for exercising — I know it isn’t easy with this cruel disease! I’m so glad you’re monitoring your saturations while working out, this is important to ensure your safety. Keep up the great work and keep in touch 🙂
Charlene.

Hi @marianne ,

I’m sorry to hear of your recent drop in some of your PFT numbers. I know how discouraging (and frightening) that can be, especially when the drop is sudden and unexpected. Did your doctor have any suspicion as to why, such as a virus or exacerbation, or does he/she think it is disease progression? I ended up quite ill with a virus…[Read more]

Hi @marianne,

Nice to hear from you, I hope you’re having a nice weekend 🙂
The sublingual Imodium tablets can be purchased over the counter here in Canada. They usually just come in a smaller pack of tablets, and are more expensive but for me they’re totally worth it.

So glad you were approved for the BI Cares Foundation grant, that is…[Read more]