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Steve Dragoo replied to the topic exercise with problems breathing, heart racing and lower back pain in the forum Living with Pulmonary Fibrosis: 50+ 10 months, 2 weeks ago
Hi Susan and Anne,
Has our doctor examed you for PAH (pulmonary artery hypertension – common with our disease)? There some different meds that might help that.
Stay well – Steve
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Charlene Marshall replied to the topic No, I don’t have COVID-19. It’s my PF cough. in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 year, 10 months ago
Good reminder, Susan ( @reglois ), I’d forgotten about that conversation! A good tool to remember, I agree. It would be nice to educate (vs. embarrass) them, however, sometimes people don’t think before they speak which can be so frustrating to us. The mask controversy is getting difficult for me to hear these days!
Hope you’re well,
Charlene. -
Charlene Marshall replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 10 months ago
Good advice Susan, thank you for sharing.
@reshma : please ensure you follow the doctor’s advice on her steroids, and tapering down on them. It is important that information on this forum is not substituted/replaced for any medical advice, even though patient’s have a lot of insight to share. I hope your Mom is doing a bit better…[Read more]
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Charlene Marshall replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 10 months ago
Thanks so much for sharing this experience, though so sorry to hear of your Mom’s struggle when there was a brief power cut from her oxygen. That is so scary when it happens! Does she use both tanks and a concentrator Reshma? I always keep one tank filled at home, which doesn’t require a power source, for instances…[Read more]
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ARMY PETE posted an update 2 years, 2 months ago
@reglois thanks for you reply. I read about your oxygen going down to the 70 s.be aware that its not just a number.every time you go below 88 or 90,it affects every part of your organs which all need that steady flow of oxy.and finally, adjusting the flow and quantety on your own is no bueno!
i just spent a half a day with those folks.its to hard…[Read more] -
ARMY PETE posted an update 2 years, 2 months ago
@reglois holy cow . you can do 3,5 kilometers.better get on your knees and pray.lol.i am lucky to walk 50 feet.’good luck to you.
peter-
Hi Army Pete, It has taken a LOT of hard work, pain and panic and 2 years to be able to do that, and now only on the flat, depending on the weather too, has to be warm and sunny, not too dry, lot of things but there is no way I want to lose any of this ability, I do have to stop fairly often to get my sats back up can suddenly drop to 79 or…[Read more]
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Charlene Marshall replied to the topic Post-meal fatigue in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 4 months ago
Thank you for sharing this @noah-greenspan !
Tagging the lovely members of our forums who were inquiring about this so they can see this response too. Enjoy your day and thanks for chiming in with this information.
@wendy-dirks @reglois @casey @nanm
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Charlene Marshall replied to the topic Weather-Related PF Symptoms in the forum Weather-Related PF Symptoms 2 years, 5 months ago
Malcom and Susan,
Thanks for sticking with us through the technology difficulties. I’ve just asked our tech team to ensure both of your usernames are on our “white list” which means your content should be held, or posted without any errors. If you keep having troubles please do let me know. I’ll do my best to get us all…[Read more]
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Steve Dragoo replied to the topic Exercising When You Have a Chronic Disease in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 11 months ago
Be careful with what you buy and when you take it. For many people it will help in just a few days if you take it right.
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Steve Dragoo replied to the topic Exercising When You Have a Chronic Disease in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 11 months ago
Hi Susan,
Serrapeptase is very unique. It is an enzyme from the silk worm used to eat dead protein (scar tissue, food, other pills) and is measured in SU – serrapeptase units. It has been used for a few decades to enhance external scar healing and to help in the liver healing. It is not clear if it helps clear scar tissue from the…[Read more]
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Steve Dragoo replied to the topic Exercising When You Have a Chronic Disease in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 11 months ago
Hi Wendy and Susan,
I am 70 and was on my own with this lovely disease until I returned to the Philippines last month. 11 months ago I found these wonderful forums and discovered there are a good number of people using supplements and alternative therapies to their significant advantage.
I don’t know your ages but when we…[Read more]
I know it is dangerous getting down to such low numbers, happens for no apparent reason , even just getting into bed can have me at 79 so I just have to get on with it, never adjust my ambulatory oxygen, that was set by the doctor, but do turn up and back down again the house oxy, like the other day, got the house covered in smoke from neighbour…[Read more]
sounds good to me .lol.hate to give up on everything.too many fun things left to do.lol