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Karen Martin

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@casey

I would like to know if anyone out there is dealng with PAH. From my latest CT and symptoms, it looks like that is what is happening to me. Does anyone have any experience with this? Right now my doctor is out of the office. 🙁 View
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    • May 16, 2023 at 5:05 pm #35056
      Karen Martin
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        Here in  southwest VA the pollen counts have been especially high this spring.  Trees and grass pollens are fierce!  Even using Zyrtec and Flonase regularly, I still have days that the drippy nose just won’t give up!  These meds are cumulative in effect so it’s important to continue using them regularly if they are what your doc prescribes.  I keep seeing articles about huge flower blooms across the US as well as fires to the west of me and with the weather what it has been, I’m not at all surprised at the thought that stuff is being borne many miles from its origin.  I wish you luck conquering your runny nose!

      • May 16, 2023 at 4:58 pm #35055
        Karen Martin
        Participant

          Pamela, I can’t speak to your scleroderma, but humidity does a number on most everyone who has breathing issues.  I stay inside to avoid it!  An exacerbation is any situation that causes you to have trouble with your O2 levels.  I had pneumonia in September that sent me to the hospital and it took a while afterwards to get back to “normal.”  You may need to make some adjustments to your treatment plan, but since you will see your doctor soon, she will be the one to make the call on that.  Don’t hold back on your feelings about this!!  The doctors are there to help you.  She needs to hear what you are feeling and what you are dealing with.  In the meantime, keep dreaming about wedding dresses and the future with your loving fiance.  Looking forward with hope is the best thing for all of us.  Best wishes to you.

        • April 8, 2023 at 4:21 pm #34855
          Karen Martin
          Participant

            I can understand not wanting to repeat too often tests that expose a person to radiation unnecessarily.  Still, I would think that the doctor should discuss the plan with the patient.  I have felt as if perhaps it’s just a matter of knowing this will not get any better, so why bother?!  Not the best feeling and I have struggled with it.  I have an appointment with my doc this coming week and will be asking for more  information about his approach to future testing and what I need to be on alert for as time passes.

          • March 23, 2023 at 3:44 pm #34704
            Karen Martin
            Participant

              This is a little more at the other end of the spectrum since my question involves needing a much higher rate of oxygen.  I currently need 15lpm when I exert myself.  I have had people tell me that is “a LOT of oxygen.”  I suppose that it is, but it is what it takes to let me get around.  At rest I can manage on 2lpm continuous flow, but when I get up to move around, it has to be much  higher.  Does anyone else deal with this level of use?  I can’t help but wonder what happens next.  Anyone?

            • April 20, 2023 at 5:11 pm #34924
              Karen Martin
              Participant

                Inhaled Esbriet?  Really?!  I hadn’t heard of that.  I am using the inhaled version of TyvasoDPI for PAH, which is much less hassle than the nebulizer form.  Lots less waste, too.  Guess I need to do some research on the Esbriet.  Thanks for bringing this up.

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