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    • #27898
      Jen Cueva
      Moderator

      Did you know that your PH team should be evaluating your PAH or PH risk score every 3-6 months? This is to help offer insights into what treatments may be most effective for you at that time. We all know that PH changes quickly, so this could help in many ways.

      I found this article interesting and I bet that you will too. Please read over it, and let’s talk about this.

      Has your PH doctor discussed if you are high or low risk? Some things we can work on may improve our risk score. What can you do to help lower your PAH risk score?

    • #27904
      Colleen Steele
      Keymaster

      This is really interesting @jenc. I never heard of a PH Risk Score. Pediatrics might be a little different. I think doctors tend to be a little more gentle when discussing risks with parents. All I know is that by the time Cullen was diagnosed his PH was chronic (near end PH). Thank God he responded to treatments almost immediately but not to the point that his PH was ever considered anything other than severe.

      When he started treatments and responded well to them we were told the average survival rate would be 5 years but some exceed the expectations. Unfortunately the statistics were spot on for Cullen. 5 years of doing well and then no matter what we tried he started declining rapidly. Transplant became our only option.

      I just want to stress to members and newly diagnosed, my son is 6 years post-transplant. I see people now living with PH for a loooong time and never needing a transplant. There are more treatment options now and an improved understanding of the disease.

    • #27919
      Jen Cueva
      Moderator

      Yes, Thanks for sharing that uplifting message, @colleensteele. With research and technology, we are living longer, and the treatment options continue to increase. I was told in 2005 that I would not be here in 3-5 years. February will be 16 years for me, thank God!

      This article was interesting because my PH doctor has never mentioned my “risk” score either. I am planning to ask my nurse if this is something that she has heard them do. I will let y’all know once I hear back from her.

    • #27933
      Laura Jean Rumsey
      Participant

      I do not know my score or have even know there was such a thing. Were can we find more correct information on how to score ourselves. My Dr’s just think this is the next thing for me.

    • #27947
      Colleen Steele
      Keymaster

      @howdyrowdy I think it really takes a doctor and his team to help a patient figure out their score. I don’t think knowing your score, per say, is as important as having a basic understanding of the severity of your PH so that a treatment plan can be established. Are you seeing a PH specialist and received a right heart cath yet? That is the best procedure to determine your stage of PH.

    • #27953
      Laura Jean Rumsey
      Participant

      Colleen Steele, thank you so much, I am waiting for February and another CT and probably another Echo before deciding to have a right heart cath done. I have sever asthma so I am probable a stage 3 is what they think will develop. I am praying they are wrong, but glad I found this site.

    • #27959
      Jen Cueva
      Moderator

      Hi @howdyrowdy,
      It sounds like you and your medical team have a plan. Is this all being down in February? If you have any changes or increase in symptoms, please reach out to them sooner. Is this being done at a PH center, or is this your usual pulmonary doctor that treats your asthma?

      I also hope and pray that they are wrong. Let us know if you have any specific questions about PH, etc.

    • #27975
      Laura Jean Rumsey
      Participant

      It is the radiologist at the Veterans Hospital that is repeating the cat scan in February. My regular Pa ordered the Echo and the Pulmonary Dr said he could do an echo on some one every day and see a different pressure. He said it was not up enough to worry about. He suggested we repeat the scan in a year. I was glad the Xray Dr had already scheduled one in February. I showed it to my Dr at Lewis Gale Hosp and he said it was just a mild elevation. I will let you guys know what the next Ct says. I am hoping they did not just stumble on this while a routine check for lunch cancer, right. I am so glad I found your site and all your wisdom. I have jerks on my end.

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