stephen-gould
Forum Replies Created
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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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I recently read this, and have an order on the way.
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@bill-cusack
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 the kitchen, but my sats drop if I walk up the steep driveway to my mailbox. I used some HSA money to buy a portable concentrator that goes up to 3 lpm, but may have to pay to upgrade if I need more. My local oxygen provider is Lincare – haven’t asked them about liquid O2, but sounds like that would be a boon for lasting longer than a tank or the batteries on a POC. Not to mention quieter than the machines!
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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 widowed) has a special needs child and would not be able to move or travel with me to any transplant center. I also have 5 stents, but have been cardiac stable since 2003. Any ideas on hiring perhaps a nursing student, or alternatives to having a family member as the support person? Diagnosed in January 2018, starting O2 today…. This is seeming very daunting right now.
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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 injectable.
I was aware of the contradictory studies when I made my decision to stop taking statins.
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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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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?