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    • #24588
      Stephen Gould
      Participant

      Hi All – I am taking it twice a day, but not seeing any effect whatsoever.  Neither bad nor good – I am scheduled for a week of testing to see if I can get listed for transplant early July, and just don’t feel like I want any more on my plate at this time.   I would be glad to add any comments through this forum as we go forward.

       

      Thanks!

      Steve

    • #24119
      Stephen Gould
      Participant

      I recently read this, and have an order on the way.

    • #24073
      Stephen Gould
      Participant

      @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!

       

    • #23317
      Stephen Gould
      Participant

      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.

    • #22833
      Stephen Gould
      Participant

      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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