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    • #35811
      Jen Cueva
      Keymaster

      We wanted to share a list of common acronyms and terms used within the greater PH community. Here is a list that Colleen and I compiled to get us started.

      *PAH: pulmonary arterial hypertension
      *SOB: shortness of breath
      *6MW: six-minute walk test
      *PFT: pulmonary function test
      *RHC: right heart catheterization
      *LHC: left heart catheterization
      *Echo: echocardiogram
      *EKG/ECG: electrocardiogram (both terms are used)
      *CT Scan: computed tomography
      *MRI: magnetic resource imaging
      *CHF: congestive heart failure
      *PVD: peripheral vascular disease
      *CKD: chronic kidney disease
      *CTEPH: chronic thromboembolic pulmonary hypertension
      *COPD: chronic obstructive pulmonary disease
      *PE: pulmonary embolism
      *PVD: pulmonary vascular disease
      *CTD: connective tissue disease
      *CREST: term used to describe a multisymptom connect tissues disease(calcinosis, Raynaud’s phenomenon, esophageal dysmotility, sclerodactyly, and telangiectasia)
      *Spoons: term used to talk about the amount of energy one has; see The Spoon Theory
      *PHriends: friends within the PH community
      *PHamily: another name for our group of PHriends
      *TX: often refers to transplant; some also use this term for treatment.

      What other acronyms or terms do you hear in the PH community? Are there any that you have found your own acronyms for? Let’s talk about this.

      **Added to our list:

      *POC: portable oxygen concentrator

    • #35824
      Jen Cueva
      Keymaster

      I thought some of our newer members might benefit from reading these terms and acronyms. Check this out, @kakes, @hussbutton, @n5jjr, @aikensue, and @erinbrooke79. I didn’t tag all, so feel free to check this post out and let us know your takeaways.

      • #35835
        Colleen Steele
        Keymaster

        You are awesome for putting this together @jenc. I will add to it if I think of any and if members think of any not included please let us know!

    • #35847
      Jen Cueva
      Keymaster

      Thanks, @colleensteele. Yes, please; if you or anyone else has some to add, let’s hear them.

      It is a basic list to get started. I hope to create a column as a handbook or guide for PH life. It will include the acronyms and terms we have listed, and any others would like to add.

    • #35857
      ky
      Participant

      @JenC, thank you so much for getting this together! Perhaps add POC portable oxygen concentrator .. I had no idea what that was until we got one hahaha.

      • #35864
        Jen Cueva
        Keymaster

        Hi, @kygon; yes, that’s an excellent one to add. I’ll add that one now to our list. How are y’all doing this week?

        It’s funny you said y’all didn’t know what POC was until y’all got one.

    • #35938
      ky
      Participant

      Thanks @JenC, we are continuing to recover covid… Bry continues to sleep sleep sleep.. he is just zapped of all energy and I continue to cough cough cough.. and wish I could sleep hahaha. Overall can’t complain feel very blessed we never had to go to hospital, but now I have to keep reassuring him its okay to sleep.. (he still thinks he needs to take care of me, but nothing he can do for a cough haha) Hope you and Manny are doing well this week and deciding on your halloween costumes!

      • #35942
        Colleen Steele
        Keymaster

        @kygon darn Covid! Coughing can get pretty exhausting too so make sure you are getting plenty of rest when you can. I hope you have a relaxing weekend planned. Get well soon!

    • #35947
      ky
      Participant

      @Colleensteel, thank you, yes it is .. I do have some patio relaxing planned and a sleeping in … provided  my cough allows for it lol

      • #35968
        Jen Cueva
        Keymaster

        Hi @kygon, hopefully, the cough and COVID symptoms are resolved for you both now. A cough can be so annoying and draining. Take care of yourself, girl.

        • #35979
          ky
          Participant

          @JenC, thanks for thinking of us, I am unfortunately Still Coughing, and still out of breath. I am trying everything I can to get well but this stuff just takes its own sweet time I guess.

        • #35987
          Colleen Steele
          Keymaster

          @kygon are you on any kind of breathing treatments? If not, it may be time to ask your doctor to start you on one. It might just be the kick start to recovery that you need.

    • #35962
      Missy Kasbaum Storm
      Participant

      Please add PTE Pulmonary thromboendarterectomy. It often offers great improvement or even a cure to CTEPH.
      Thank you.

      • #35969
        Jen Cueva
        Keymaster

        Hi @missyjstorm, that’s an excellent addition! PTE surgery is done here at UCSD many times to help CTEPH patients. Thanks for adding this to our list.

    • #35998
      V.R. Peterson
      Participant

      Another one is BPA (Balloon Pulmonary Angioplasty). It’s a procedure for CTEPH patients. You can read more about it here: https://health.ucsd.edu/specialties/heart-vascular/pulmonary-hypertension/pages/bpa.aspx

    • #36005
      Jen Cueva
      Keymaster

      Hi @mamabear007, that’s another great addition. I love the additions that y’all have. I am planning to create a master list and probably a column that will include this list, too.

      Your link will also help others who want to learn more about the BPA procedure. Well done, and welcome back, sweet lady.

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