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    • #27447
      Jen Cueva
      Moderator

      Often, when our loved one or we are diagnosed with PH, we are misinformed by uneducated doctors. I know that for me, I was told that ” PH was a death sentence.” I know others who have been told similar. This was back in 2005. I quickly educated myself and am thankful that I have been blessed thus far. Grateful for medical research and some fantastic medical professionals.

      PH is not easy to deal with by any means, but it is far from a “death sentence.” Has your perspective on PH changed since diagnosis? If so, how? What has impacted your perspective the most? Let’s talk about this.

    • #27450
      Colleen Steele
      Keymaster

      @jenc this is such a good question! When my son was diagnosed we were basically told to prepare to lose him. We asked about transplant and in so many words we were made to feel like he wouldn’t survive long enough to receive one.

      Our perspective changed when we met with a PH specialist. He gave us hope. No, there is not cure and yes, it is life threatening, but treatments offer more time and a better quality of life. It didn’t take long for us to notice great improvement in Cullen once he started PH treatments.

      This is why I can’t stress enough, if you aren’t seeing one – find yourself a PH specialist. You need their expertise for treatment and their perspective to provide mental wellness.

    • #27505
      Jen Cueva
      Moderator

      Let’s try this again, yesterday this post would not allow me to reply.

    • #27525
      Marla Jennison
      Participant

      Yes! And it has been in a very good way more than once. For two years I thought death was imminent. Then I decided to ignore it, but I was living with the diagnosis of a fatal illness for another 7 years until just this summer.

      Today I learned that not only are there treatments, my treatments will be just for asthma and allergies, not pulmonary hypertension after all. I was diagnosed today with NO pulmonary hypertension!

      So have another doctor check all your numbers. Have another do some tests. And if it is ph, realize that these days there are medicines and more will be on the way!

      Good luck to all! Keep living!

    • #27530
      Colleen Steele
      Keymaster

      @marla wow! That is amazing news! Did they discover no PH through a heart cath? You must feel like a child on Christmas morning!

    • #27546
      Jen Cueva
      Moderator

      Wow, @marla, that is fantastic news! I cannot imagine how your emotions reacted to this news. How did they tell you? Was this after an RHC or other tests? Are you saying that you do NOT have PH, but you have had allergies and asthma?

      Thanks for sharing such an incredible story. Like you mention, there are so many new treatments that can help with PH. I was diagnosed in 2005. A positive attitude has helped me get through some of my worst days.

      • This reply was modified 3 weeks, 2 days ago by Jen Cueva.
    • #27548
      V.R. Peterson
      Participant

      My perspective is good because of my son’s improved health.

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