• jen-cueva

    Member
    May 17, 2020 at 10:38 am

    @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.

  • jimi-mcintosh

    Member
    May 19, 2020 at 8:49 pm

    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.

  • jen-cueva

    Member
    May 20, 2020 at 8:17 am

    @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!

  • Colleen

    Member
    May 20, 2020 at 4:09 pm

    @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.

Log in to reply.