@dale-darling
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Dale Darling replied to the topic Flash Briefing: IPF Patients Switching to Esbriet to Ofev Stopping Treatments, Possibly Due to Low BMI in the forum Flash Briefings & Podcasts 3 years, 5 months ago
Just thought I would chime for a minute about Esbriet, I have been on it for about 10 months now. Only side effect I have experienced is weight loss and then appetite loss recently. When going to the Doctor for a check up he said to try and cut back too 6 tablets instead of 9 per day (267mg each). When I cut back my appetite returned right away. …[Read more]
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Dale Darling replied to the topic Tips for Carrying Multiple Items as a Patient with PF. in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 6 months ago
I find a little comfort in carrying a can called BOOST Oxygen when I use my POC which only goes to 5L Liter when I am walking to much. My Doctor says I need 6L and 8L if exercising. It not a cure, but it is 95 percent pure oxygen that a lot of pilots and athletic people use if then need quick blast of oxygen too help them. I have been caught…[Read more]
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Dale Darling posted a new activity comment 4 years, 4 months ago
Also for to add that the doctor did tell me that i need oxygen while walking, so I did got a portable concentrator ,it seems to help some, but it;s rough trying to do to much while walking, but I do recover quicker with it than without having one, Just waiting for the new meds to arrive.They also want me to do pulmonary therapy, I going to check…[Read more]
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Dale Darling posted a new activity comment 4 years, 4 months ago
Sorry for the slow reply, didn’t see your posting Charlene. I had the sleep study, I have mild sleep apnea sorry don’t know how to spell it. Hated the sleep test, never again, terrible time sleeping. I will not wear a mask either, if i die i die not knowing LOL I went to the U of M Hospital Pulmonary last with week with my CT Scan. That;s all they…[Read more]
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Also for to add that the doctor did tell me that i need oxygen while walking, so I did got a portable concentrator ,it seems to help some, but it;s rough trying to do to much while walking, but I do recover quicker with it than without having one, Just waiting for the new meds to arrive.They also want me to do pulmonary therapy, I going to check…[Read more]
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Great news about your portable oxygen concentrator (POC) Dale! Which one did you get? I find my POC really helpful as well, just a bit heavy for my liking. I wish it was a little lighter! Pulmonary rehab was really helpful for me, so if you get the chance to do it and you feel like you can manage it, I’d definitely recommend it. Find out more…[Read more]
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Hi @dale-darling, great to hear from you – thanks for writing!
No worries about the slow reply at all, I totally get it and just am hopeful that things are going well for you. I’ve heard the sleep tests are terrible due to all the electrodes placed on you. Did you have those? Hope your appointment at the UofM went well, and that is EXCELLENT news…[Read more]
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Dale Darling posted an update 4 years, 5 months ago
Who, it could something as simple as your back or spine might be a little causing that discomfort when you sneeze ? only a guess ? when I have sneezing attacks lately they go 10 to 12 sneezes. Don’t know if it’s the PF or just from hay in my barn, been around hay for 40 years. Have PF for 5 1/2 years now and my Dr. just put on Oxygen when I walk…[Read more]
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Hi @dale-darling,
Thanks for getting in touch, it is great to hear from you! I appreciate everyone’s thoughts on what could be causing the sneezing discomfort – it is so unusual for me. Thankfully, it is a bit less now (although still present) so I am wondering if I was fighting something off when it was at its worst? It could have been something…[Read more]
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Sorry for the slow reply, didn’t see your posting Charlene. I had the sleep study, I have mild sleep apnea sorry don’t know how to spell it. Hated the sleep test, never again, terrible time sleeping. I will not wear a mask either, if i die i die not knowing LOL I went to the U of M Hospital Pulmonary last with week with my CT Scan. That;s all they…[Read more]
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Also for to add that the doctor did tell me that i need oxygen while walking, so I did got a portable concentrator ,it seems to help some, but it;s rough trying to do to much while walking, but I do recover quicker with it than without having one, Just waiting for the new meds to arrive.They also want me to do pulmonary therapy, I going to check…[Read more]
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Great news about your portable oxygen concentrator (POC) Dale! Which one did you get? I find my POC really helpful as well, just a bit heavy for my liking. I wish it was a little lighter! Pulmonary rehab was really helpful for me, so if you get the chance to do it and you feel like you can manage it, I’d definitely recommend it. Find out more…[Read more]
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Hi @dale-darling, great to hear from you – thanks for writing!
No worries about the slow reply at all, I totally get it and just am hopeful that things are going well for you. I’ve heard the sleep tests are terrible due to all the electrodes placed on you. Did you have those? Hope your appointment at the UofM went well, and that is EXCELLENT news…[Read more]
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Dale Darling posted an update 4 years, 6 months ago
This is a tough site to log- in too. It says I have no user address listed, but yet it sends me notices daily. I can log- in with Facebook, but that’s not the same address that I’m getting my email at. When I have time I would like to jump once in while but can stand the frustration at times. What is the best solution. Thanks Dale D.
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Hi @dale-darling, thanks for bringing this to our attention. We’ve had others make similar comments as well, so I just let our tech team know. Can you private message me your email address, and then our tech team will adjust your account (not know or change your password) but just input your email so that you don’t have to log in using Facebook.…[Read more]
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Dale Darling replied to the topic Managing Exhaustion & Improving Sleep with Pulmonary Fibrosis. in the forum Diagnosis Information and General Questions 4 years, 6 months ago
I’m still working, I have had PF for at least 5 1/2 years. My job is where I can set down at a desk quite a bit when needed. I have gotten a little worse over the last 6 mo. and have a oxygen concentrator at home I use in most evening now. But what I wanted to add was that I sleep with the concentrator and usually sleep pretty well most of the…[Read more]
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Dale Darling posted an update 4 years, 6 months ago
Sooner or later I will figure how to work this post out LOL I have had PF for about 6 years and will add information as I go. I had a Ablation Surgery in January I seem to have a little worse this last winter and spring and my Doctor has ordered me a CT Scan and wants a Sleep Study test next week so will see how that goes and after that I will go…[Read more]
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Dale Darling posted a new activity comment 4 years, 8 months ago
Thank You 🙂
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Dale Darling became a registered member 4 years, 8 months ago
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Hi Dale, thanks for joining the PF forums and welcome!
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Thank You 🙂
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Great news about your portable oxygen concentrator (POC) Dale! Which one did you get? I find my POC really helpful as well, just a bit heavy for my liking. I wish it was a little lighter! Pulmonary rehab was really helpful for me, so if you get the chance to do it and you feel like you can manage it, I’d definitely recommend it. Find out more…[Read more]