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    • #33514
      Jen Cueva
      Keymaster

      There are a variety of tests that are usually done to confirm a PH diagnosis and at routine visits. Some PH specialists prefer to do these annually, others bi-annually, or each visit. The list of tests also varies among specialists. Some doctors have their preferences, and each of us is also different and at different levels of PH progression.

      Here are a few PH specialists’ most common diagnostic and routine tests. I’ve also provided links to some of the tests for those who want to learn more.

      Here you go, @debbie, @brendad53, and @wheeldog. I believe you both have asked questions about this topic recently. I hope this will be helpful.

      Electrocardiogram (ECG)
      Echocardiogram (Echo)
      Right heart catheter(RHC)
      Ventilation-perfusion or lung perfusion scan (VQ Scan)
      Pulmonary function tests (PFTs)
      Six Minute walk test (6MW)
      Chest X-ray or CT scan

      Our PH News main site has some other tests that are discussed here.

      Do you routinely undergo these same tests? How often do you have them? Do you also have more in between if your symptoms worsen? Are there others that you do?

    • #33517
      Roger Bliss
      Participant

      I have had all of those except the VQ Scan. Gonna get an Echo and a VQ Scan on the 17th. I have had way too many X-rays…..got 2 a month for the last year for my fluid.

      • #33519
        Jen Cueva
        Keymaster

        Hey @wheeldog, my PH appointment is the day before on 3/16. Yeah, I bet you have had your share of x-rays, all types, huh? You live a pretty adventurous life, my PHriend.

    • #33775
      Debbie Moore
      Participant

      Thanks for posting these @jenc.  I have had all of these tests within the last year and just had the RHC (for the second time) and Echo (for the third time) done last week.  I guess those are going to be my annual tests. Good news these test results gave me -my PH is in the high mild, low moderate stage even though I feel like it is severe.  The doc said my heart and lungs are surrounded with lots of fluid.  When the fluid is gone I will feel great.  However, getting this fluid off is not easy.  I gave up salt months ago, I take two torsemide a day (that’s probably going to double), and I took a half dose of a blood pressure pill that works as a diuretic, but it made me feel terrible – chest pain, pressure, nauseous, dizzy.  I’m not taking it again.

    • #33777
      Colleen Steele
      Keymaster

      @debbie trying to treat the fluid and balance the meds is so hard. It unfortunately takes trial and error. Don’t give up. If you have an issue with a medication there are others that can be tried.

      A while ago @jenc shared this YouTube video of the Low Sodium Queen. She offers great low sodium recipes in case you are interested.

    • #33793
      Jen Cueva
      Keymaster

      Hi @debbie, yes, I struggle with fluid, and finding that balance is tricky. As Colleen shares, this can often be trial and error. Unfortunately, it’s not always fun trying to find the best combination for your body.

      The Low Sodium Queen makes some exciting meals and shares them on her YouTube channel. I also wrote a column or two on my struggles with managing this balance.

      Can your doctor maybe add something with the torsemide? I take several different types of diuretics. Aldactone (spironolactone) is a potassium-sparing diuretic that is one that helped me with my first ones. Are you already taking potassium? Be certain also to monitor your blood; pressure with these. Which BP med caused those symptoms? I get most of those same symptoms when dehydrated from taking too many diuretics trying to get the fluid off.

    • #33868
      Debbie Moore
      Participant

      The aldactone was the one causing me all the trouble with feeling horrible.  I went off it and the dr didn’t replace it with anything.  I do take a potassium pill every day.  I have lost 9 pounds so far and feel so much better already.  The best news is I was able to sing all the songs (all the stanzas) in church this past Sunday.  Usually I’ve not been able to make it through the first song.  It is amazing that something so small as being able to sing songs can make me feel so good!

      • #33869
        Colleen Steele
        Keymaster

        @debbie having the breath to sing is no small thing when it means as much as it does to you. That is wonderful! What is one of your favorite hymns?

        I know as patients we often want to jump right into telling our doctors what is wrong I think it’s appreciated when we also share what is going right. A good doctor truly wants their patients to improve and have a better quality of life. During your next appointment let you doctor know how much being able to sing at church made you happy. It can also serve as a way to gage how you are doing in the future.

        • #34086
          Debbie Moore
          Participant

          I’ll definitely tell my doctor.  That is a great idea.

          Favorite hymn – I really love them all.  I have a collection of hymn books and love to pull one out and sing around the house.

        • #34095
          Jen Cueva
          Keymaster

          Hi @debbie, I have an old Baptist Hymnal book about my late great-grandmother, which I have saved for several years. So, I, too, can attest to trying to pick a favorite.

          Also, this post popped into my head during Easter service when I was frustrated when I couldn’t sing all of the songs I wanted to sing while there. Thanks for mentioning this as a way to measure improvements.

        • #34109
          Colleen Steele
          Keymaster

          @debbie @jenc I’m Roman Catholic. When I was in grade school it was the same hymns every week and now I miss them. Rarely hear the old hymns anymore. I don’t know if you have ever heard of it but my favorite has always been “Here I Am, Lord” – Dan Schutte

        • #34120
          Jen Cueva
          Keymaster

          Hi @colleensteele, I don’t remember that one; let me look it up on the internet so I can listen. But I was raised Baptist, and many of those old hymns are no longer heard much either. I love looking through the hymnal book and remembering old songs when I was a child. Some are newer versions they play on Air1 radio, but it sounds different. But I enjoy listening to Air1, too.

      • #33877
        Jen Cueva
        Keymaster

        Wow, @debbie! I love that you shared you could sing the songs at church after getting rid of some excess fluid. This is such a significant update, and it melts my heart because I’ve loved singing at church. It was one of my favorite past times, even as a young child.

        Thanks for sharing this amazing progress. We all measure our progress in different ways and want to celebrate with y’all each time you notice an improvement. We need to share these little “wins.”

        I look forward to hearing how this upcoming Sunday goes for you. Sing my PHriend, until your heart’s content.

    • #34110
      Brenda Denzler
      Participant

      How common is it for someone to pass these tests at first, but eventually be diagnosed with some form of PH?

      • #34119
        Jen Cueva
        Keymaster

        Hi @brendad53, if these tests are performed by a PH Center with a PH specialist, it’s less likely to happen. But I’ve known many who had Echoes previously at other places and then saw a PH doctor who did a repeat and a right heart cath, and they were diagnosed with PH. So, it happens. I hope this answers your question, maybe others will chime in.

    • #34154
      Debbie Moore
      Participant

      @colleensteele I love that hymn.  I remember how much it moved me, then the next thing you knew I was on a mission trip in Nicaragua.  @jenc There was a Baptist hymn that I only sang once but I loved it.  I don’t remember the name, but it was about “from the cradle to the grave”.  I’ve tried to find it, but have had no look.  Then again I haven’t looked in years.  All hymns are so rich with meaning – got to love them!

    • #34162
      Jen Cueva
      Keymaster

      Hi @debbie, I can’t think of a song at the moment with that lyric. But I think an ancient one says that; I can’t recall the title. Yes, they do carry so much meaning. Some of my favorites are Because He Lives and At the Cross, which we sang when I was a small child. But again, there are so many good ones when I hear it comes back to me.

      Thanks for sharing such a meaningful topic. I find these hymns help me on my worst days. They offer such excellent reminders. Can you relate?

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