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    • #17423
      Colleen Steele
      Keymaster

      For many who have already been diagnosed with Pulmonary Hypertension, getting to that diagnosis may not have been easy. It is common to experience misdiagnosis prior to PH and during that frustrating process, 2nd opinions may have been necessary. The other experience some might have had is once diagnosed with PH it became clear that what you needed next was a PH specialist if your current doctor wasn’t one. Personally I have not heard of anyone being misdiagnosed “with” PH but I have known people uncertain once diagnosed, if they where receiving proper treatment and care. What has your experience been in obtaining a 2nd opinion?

      Here are some links resources that I think give some sound advice on seeking a 2nd opinion.
      https://www.hospitalhealth.com.au/content/nursing/news/a-guide-to-a-second-medical-opinion-1161090967#axzz5pF4WagqF

      https://health.usnews.com/health-news/patient-advice/articles/2014/07/23/a-patients-guide-to-second-opinions

      For those who are considering transplant or have been told they are ineligible for one and would like to seek a 2nd opinion I offered some links in our Lung Transplant Forum.

      How To Get Listed for Transplant / 2nd Opinion

    • #25208
      Jen Cueva
      Moderator

      @billb, this section above shares a link about obtaining a second opinion that was shared by @colleensteele. I think that the first link above that she shared offers some tips on getting a second opinion. This may be of interest to you.

      I hope that you and your wife are having a relaxing weekend.

    • #25294
      Jimi Mcintosh
      Participant

      Thank you, I will look into a 3rd opinion. I understand the logic and the boards reasoning. Like the doctors treating covid-19 making life and death decisions. My will to live is stronger tvv hv an my will to die. I have been following how it has been proposed to harvest and award transplant organs.

      I have a friend that has celebrated 10 years post transplant, and there have been stumbling blocks and changes CB in meds and treatment protocols. They are striving and still making a positive impact o the world.

    • #25299
      Jen Cueva
      Moderator

      @jimi, I love your strong will to live! We must keep that optimism to keep us going. Some days may be more challenging than others.

      AS I tell many newly diagnosed PH patients, “if you are not fully satisfied with the care and opinions of a doctor, move to another one.” I encourage everyone; Rather, it is for PH care or transplant to get as many opinions as needed. I have a few post-transplant friends who have had 4-5 opinions. I know that @colleensteele can discuss this more, too. But, each transplant center has its requirements, and I have noticed this has a bit of variance.

      Congrats to your friend on 10 years post-transplant! That is awesome!

    • #25303
      Colleen Steele
      Keymaster

      @jimi my son will be celebrating 6 years post heart/double lung in August. He has had his struggles but for the most part, is doing well and enjoying life. I recommend 2nd or even 3rd opinions regarding transplant. Try different transplant facilities or even out of state if that is possible for you. I have known a few patients who were told they were ineligible at one facility, approved in another and received a transplant.

      I also want to let you know that is possible to just get a single lung and unless your heart is severely damaged, they no longer do heart and lung. They have discovered that once the new lungs are transplanted the heart started to repair itself.

      Feel free to ask me any questions and share concerns.

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