Susan Howitt

@reglois, @anne-tarantino

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

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.

@reglois

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]

Hi @reshma & Susan (@reglois)

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]

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

Malcom and Susan,

Hi @mal-com, and @reglois

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]

@reglois

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.

@reglois

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]

@wendy-dirks, @reglois

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]