@steveg
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Stephen Gould replied to the topic Low SpO2 levels when sleeping in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 4 months ago
I started using O2 connected to my CPAP tubing, and sleep so much better with my sats up at night. I’m now 24/7 on at least 6 lpm.
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Stephen Gould replied to the topic EGCG Green Tea Extract in the forum Clinical Trials 1 year, 9 months ago
I recently read this, and have an order on the way.
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Stephen Gould replied to the topic Oxygen Questions in the forum Diagnosis Information and General Questions 1 year, 9 months ago
Hi Bill,
Great news, hope you have a good recovery. Please share anything you can – I have my new patient call mid May to start the process to see if I can get on the list at Shands in Gainesville FL. I know this thread is about oxygen, and I have been using it as needed on a 2-3 lpm rate. This works fine when I am standing, walking, or in…[Read more]
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Stephen Gould replied to the topic Lung Transplant Considerations. in the forum Pre/Post Lung Transplant 1 year, 10 months ago
Hello all, just re-read all these…. I have had a serious downturn, and my pulmonologist is currently working on a transplant referral. Based on the SRTR info, I am looking at Shands in Gainesville FL as a first option. Vanderbilt would be next on the list. My largest potential issue is the pre/post support, as my GF of 12 years (I am wid…[Read more]
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Stephen Gould replied to the topic Commonly Prescribed Medication For Cholesterol May Benefit IPF Patients in the forum Flash Briefings & Podcasts 1 year, 11 months ago
Interestingly, I stopped taking statins due to the European studies that showed them as a likely cause of PF. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3297101/ While it may have been primarily for former smokers, statins are contraindicated for that group. With all of the other known side effects of statins, I now use the Repatha inje…[Read more]
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Stephen Gould replied to the topic Friend Requests in the forum Using Our Forums 1 year, 11 months ago
Hi All – I never received a friend request from Kate? Being somewhat new to this group, maybe I am not looking in the correct place? Where does one see friend requests?
Thanks,
Steve
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Stephen Gould started the topic Friend Requests in the forum Using Our Forums 1 year, 12 months ago
Hi All – got a friend request email from this site, however clicking the link to accept it brought me to the site, and nothing more. I don’t see anywhere to view or accept friend requests, nor to search for the specific member that sent the request.
Can anyone educate me on this?
Thanks, Steve
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Stephen Gould replied to the topic Nattokinase – What dose? in the forum Living with Pulmonary Fibrosis: 50+ 2 years ago
Hi all – a friend suggested serrapeptase (one who has no connection to any IPF groups) and after doing some Google searches, it seems to function to break up scar tissue. I am taking 80,000 units 2x per day, but haven’t seen any recommendations for dosages. Curious also about what dosage for adding nattokinase to my regimen?
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Stephen Gould started the topic New Member in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 5 months ago
Hello everyone!
Just joined, diagnosed as an incidental finding to a bout of pericarditis back in December 2017. Started on esbriet spring of 2018, and since then just kind of on a slow glide path. In reading some of the topics, I am experiencing fatigue, more sleeping, less appetite, but still working. I’m in the Atlanta area, and look fo…[Read more]
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Stephen Gould posted a new activity comment 2 years, 5 months ago
Thanks Mark, very glad to find the group! The laser therapy caught my attention, and I just went to the web site to register for the study. Haven’t mailed the reports yet, but will get to that ASAP.
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Stephen Gould became a registered member 2 years, 5 months ago
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Hello Stephen, thank you for joining your pulmonary fibrosis forum.
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Thanks Mark, very glad to find the group! The laser therapy caught my attention, and I just went to the web site to register for the study. Haven’t mailed the reports yet, but will get to that ASAP.
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You are most welcome.
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Steve Dragoo seems well versed in laser therapy. Welcome to the group Stephen Gould! I am fairly new too as just diagnosed with IPF in May, 2016. On no oxygen nor OFEV or Esbriet. Only Symbicort inhaler, Singulair generic, and use Ricola original lozenges as needed for cough. Rarely use Delsym (not DM) cough syrup. Also have been using Clean…[Read more]
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Sorry I was diagnosed in May, 2018. Have had scarring on lungs per x-rays since 2016.
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You are most welcome.
Steve Dragoo seems well versed in laser therapy. Welcome to the group Stephen Gould! I am fairly new too as just diagnosed with IPF in May, 2016. On no oxygen nor OFEV or Esbriet. Only Symbicort inhaler, Singulair generic, and use Ricola original lozenges as needed for cough. Rarely use Delsym (not DM) cough syrup. Also have been using Clean…[Read more]
Sorry I was diagnosed in May, 2018. Have had scarring on lungs per x-rays since 2016.