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    • #22424
      Colleen Steele
      Keymaster

      I had not heard of Hypogammaglobulinemia prior to a forum member who mentioned that he struggles with this disease and PH.

      According to healthline.com,

      “Hypogammaglobulinemia is a problem with the immune system that prevents it from making enough antibodies called immunoglobulins. Antibodies are proteins that help your body recognize and fight off foreign invaders like bacteria, viruses, and fungi.

      Without enough antibodies, you’re more likely to get infections. People with hypogammaglobulinemia can more easily catch pneumonia, meningitis, and other infections that a healthy immune system would normally protect against. These infections can damage organs and lead to potentially serious complications.”

      Are you living with PH and Hypogammaglobulinemia? If so, please share you experience with us and how it is being treated along with your PH.

    • #26895
      Greg Wooten
      Participant

      I was diagnosed with Hypogammaglobulinemia two years ago and receive IV infusions each month. I was diagnosed with PAH in June. Since my diagnosis, I have had one infusion but my hematologist did not make any changes to my therapy.

    • #26900
      Colleen Steele
      Keymaster

      Thank you @greg for sharing your experience with Hypogammaglobulinemia. I’m not familiar with this disease but I can relate to IV infusions several times a month. Due to rejection issues post transplant my son had to have IVIG and Basilmixilab infusions every month and did 4 months of photopheresis. They are probably not what you are receiving but I sympathize with how time consuming they can be and sometimes there are side-effects that they trigger too. How do you handle the infusions? Are you seeing a PH specialist in addition to a hematologist? If not I highly recommend reaching out to one.

    • #26906
      Jen Cueva
      Keymaster

      Hi @greg, thanks for sharing your experience with us about Hypogammaglobulinemia. You must take even more precautions during this pandemic. How are you doing with this? Dealing with this and PH is undoubtedly challenging for sure, I bet. The many IV infusions must be exhausting for you. Can you get them at home, or do you go to the cancer center? I have anemia and see my hematologist, and do infusions there. But, I have had a few at home.

      Do you have a port or cath to help with infusions?

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