This topic contains 22 replies, has 8 voices, and was last updated by  Brittany Foster 1 month, 1 week ago.

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  • #16591
     Libby 
    Participant

    Do you think it is possible to have your PH advance significantly without seeing really any new symptoms?

  • #16598
     Brittany Foster 
    Keymaster

    Hey Libby,
    By “advance” do you mean that the pressures in your pulmonary artery are significantly higher than before? I don’t have much experience with that because my PH is considered “mild” based on the numbers. My underlying conditions causing the PH are more worrisome than the actual PH itself.

  • #16603
     Cris Dingman 
    Participant

    Libby,
    I have PH with really bad rheumatoid arthritis and lung issues. My PH is pretty stable, at least according to my heart doctor. My lung doctor, however, is another story. I am on O2 at night, when I exercise and when I am out walking alot. I keep asking him why do I feel better than my numbers say I am. He says my system has just gotten used to a lower O2 level. Is that good or bad, I don’t know. Have a good chat with the doc next time you see him.

    • This reply was modified 4 months, 3 weeks ago by  Cris Dingman.
    • #16605
       Brittany Foster 
      Keymaster

      Cris,
      This sounds similar to me too. In the beginning I was really symptomatic without the oxygen when they were first noticed to be dropping. Now I still have the low oxygen levels and need oxygen with a higher amount of activity but just walking around slowly or sitting down I really don’t need it as much because my body has definitely adjusted to the lung function that I have and the oxygen levels that I have been dealing with. The body does adjust in mysterious ways after awhile.

    • #17662
       Judie 
      Participant

      Hi Chris,
      Your case sounds similar to mine., I also have RA which was found 3-4 years ago my PAH was diagnosed last July… my average pressure was 31 so it’s considered mild per right heart cath but I have very similar symptoms as you. My 6 minute walk is good but walking a half mile to the store was causing shortness of breath. My echo were 55 then 50 a few months ago. 5 points to me seems irrelevant especially when the cath shows 31.
      Judie

      • #17680
         Brittany Foster 
        Keymaster

        Judie,
        I base a lot of what I’m going through on my symptoms because sometimes it just doesn’t match the actual pressure numbers. I try to pay attention to how I feel more than the number on the cath. What have you been doing about your symptoms and shortness of breath ?

  • #16618
     Libby 
    Participant

    Brittany, yes when I say advance I do mean higher pressure or even narrower arteries. It makes sense that you could adjust to a point with lower oxygen levels.

    • #16621
       Brittany Foster 
      Keymaster

      You have probably mentioned this before, but are your doctors thinking about doing another recent right heart cath or are they using echos to measure your pressures?

  • #16623
     Libby 
    Participant

    Both. As if right now, I have yearly echos, stress tests, pulmonary lung function test and MRI. I don’t think the echo and stress test are really used to measure the pressure per se, more like the amount of oxygen? Does that make sense? I am scheduled to have a cath though in about nine months anyways to do some ballooning so then they can get an accurate measure.

    • #16628
       Brittany Foster 
      Keymaster

      9 months away must seem like such a long time to wait. I’m glad that they are keeping an eye on things though and are doing all the necessary testing to check your oxygen levels and lung function. Those tests are so important (even though they can be a real pain sometimes). Are they ballooning your pulmonary artery or other arteries too?

  • #16647
     Libby 
    Participant

    They balloon all the narrow arteries in my lungs. My PH is weird because it is popcorned narrowing throughout, versus narrowing everywhere. My doc is very conservative, hence the long wait. He says as long as I am able to do my day to day stuff, he doesn’t want to rush. As I’ve said before, this is number 5 for me and I have a history of being very difficult to baloon! It typically takes 4 to 8 hours of surgery because my arteries are SO stiff. In the past they have torn and I had internal bleeding that landed
    me in ICU. This is why the longish wait
    😛

    • This reply was modified 4 months, 2 weeks ago by  Libby.
    • #16660
       Brittany Foster 
      Keymaster

      Libby,
      Thank you for explaining all of that ! Wow, it sounds so complicated but it also sounds like you have a great group of doctors who care about you and your well being and listen to the symptoms that you report to them. That is a long time for a surgery. Are you giving complete anesthesia for this ? Do they do it through a cath in the groin? Some use the arm or neck. Just curious ! That must have been a terrible experience with the torn arteries ! That’s one of my biggest fears with the ballooning and stenting of things !

  • #16683
     Libby 
    Participant

    Oh I am most definitely completely put under! Yes, they go through my femoral artery.

    • #16694
       Brittany Foster 
      Keymaster

      That must be somewhat of a relief that you are fully put under for it ! I was given “conscious sedation” for my bronchoscopy and literally remember EVERYTHING but I just didn’t care what was happening. It was a very strange feeling, kind of unsettling. But the biggest help for me was that I really trust my doctor who did it and he made me feel comfortable with him the entire time. I think that’s always half the battle for me. I need to be extremely trusting and comfortable with the person that is doing ANYTHING (whether it’s a small procedure or not)

  • #17553
     DAVID PETERSON 
    Participant

    My PH is in a good place right now. My lupus and heart problems are the focus for now. With my luck the PH may be a bigger problem in the future.

    • #17554
       Brittany Foster 
      Keymaster

      David,
      I can understand this. Sometimes the cause or contributing diseases to our PH can be a bigger problem and harder to manage. Do you see separate doctors for your heart conditions and Lupus? Hopefully they are all in close communication with one another. Sometimes it can be hard for all of my specialists to communicate, but I make sure they all get each others visit notes. Usually my PCP helps me coordinate that too.

  • #17606
     Randolph Reynolds 
    Participant

    Hello,
    I have learned there are so many versions of PAH. I am on Remodulin and have been for nearly a year. I have had three Heart Caths. Recently, because I had bouts with insomnia the Doctor prescribed Trazasone a strong anti-depressant. Since I started taking it, several weeks ago, it plus the Remodulin had caused me awlful bowel responses. So even though I am on full time oxygen trying to balance all this is difficult. Because I can’t gain weight I am getting weak.
    That is my status right now. I’ve been told I am at a critical point in my five year treatment. Handling all this has become a full time job. I haven’t read any where in our forum about someone in this case. Thanks for letting me unload. Best to all you who are facing this disease.

    • #17615
       Colleen Steele 
      Keymaster

      @ripple76 I am so sorry to hear how much you are struggling. My suggestion is if you haven’t already, make an appointment with your doctor to discuss the side effects you are experiencing, especially since adding the anti-depressant. I would think the Remodulin is most important so perhaps he needs to rethink how to treat your insomnia. Trying to gain weight when PH progresses is often a real challenge, but add to that bowel side effects then the problem snow balls. I wonder if a nutritionist could help advise you? Maybe ask your doctor if he can arrange that. If you are seeing multiple doctor’s for different things make sure they all are aware of the problems you are having, especially since the change in medication. You are always welcome to vent your feelings here. Please keep us updated on how you are doing.

    • #17617
       Brittany Foster 
      Keymaster

      Hi Randolph,
      I’m sorry you’re going through so much physically and mentally right now. Did you ask your doctor or pharmacist if there is a possible interaction with the two medications that are causing you GI discomfort? I have also experienced a large amount of weight loss over the last year. It is so hard to gain the weight back and I am now seeing a dietitian to help with that side of thigs. Have you ever seen one?

  • #17614
     Colleen Steele 
    Keymaster

    Libby, great question! As we can all see in reading each other’s comments, everyone’s PH experience is different. In speaking from experience with my son, I would say the answer is yes, PH can advance without becoming symptomatic. I think @crisincincy gave an excellent suggestion of how that might be the case. I can recall my son saying to his doctor, “I think I’ve just gotten use to feeling this way.” Just like you Libby, there would often be a lot of time for him between cath’s and procedures because of the risk involved, especially as his PH progressed. By the time you have the procedure you might feel like things haven’t progressed because by then you are use to the symptoms. Make sense? As Brittany suggested, keep following up with your doctor and make use of all the non-evasive ways of monitoring your PH until your cath.

    • #17618
       Brittany Foster 
      Keymaster

      Really good suggestions colleen! I think that is certainly is possible ti have progression of the actual pulmonary number without symptoms. Like you’re saying, I have experienced the “getting used to” the symptoms, especially the lower oxygen levels. For me a level of “high 80s” on exertion is my version of normal.

  • #18573
     Ally 
    Participant

    Hello I am Ally and new to the forums. I recently went in for a check up and my O2 is hovering at 89. I am on opsumit now but they are thinking of adding uptravi. I have ipah in who group 1 with 2-3 classification.

    • #18578
       Brittany Foster 
      Keymaster

      Hi @ally1567 , is this your resting o2 ? Were the doctors concerned with this? I would highly suggest to make sure the doctors monitor your levels on exertion too. It seems like a “no brainer” for them to do if you are having symptoms with activity, but I did not get an exertional pulse ox test done until I was 25 and that’s when they realized how low my oxygen was dropping and it was causing a lot of my symptoms like feeling dizzy, light headed, tired easily etc.

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