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June Patient Support Group Recap: Exciting news, new medicines & hope

Big news kicked-off the HeartBrothers support group’s June meeting: one of the participants just passed the one-year post-heart transplant mark!


Seven heart transplant patients joined the meeting. One woman began by sharing the good news of her one-year milestone. She also discussed some of the challenges. At nine months, a reaction to one of the medications caused her to lose her sense of balance. “That took me by surprise. [The medication] could be helping all this time and then something happened,” she said. “It was quite the experience.” Working with her doctor, she is on a different medication and can now walk again without a walker.


This transplant recipient is not alone in dealing with reactions to medication taken post-transplant. HeartBrother Hamid Mahdavy spoke about his challenges with changing medications and balancing dosages. He explained how his body started rejecting his new heart and it took a while to get the right medication balance for his body to accept the organ. Fortunately, there was no damage to his heart.


HeartBrother Pat Sullivan mentioned that the HeartBrothers Foundation is occasionally contacted to consult on drugs and devices currently under development. One that is on his radar is from scPharmaceuticals, a Burlington, Mass.-based company. They have developed an FDA-approved a subcutaneous FUROSCIX that will give patients a dose over eight hours to manage fluid overload. One of the number one reasons patients go back to the hospital is fluid overload. Another company is developing an at-home device that tracks fluid in the lungs. “All these things are designed to keep you out of the hospital,” said Pat.


Additionally, Hamid is looking into an ultrasound procedure that can help with hand tremors, a possible side effect. He will talk with someone in the next few days and report back during next month’s meeting.


Members of the HeartBrothers also discussed their visits to hospital patients currently waiting for heart transplants and emphasized the message it sends about recovery.


“This is true (referring to life post-transplant). What you are waiting for is worth the wait,” said one HeartBrother member.

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To learn more or register for our next Patient Support Group, click HERE.

HeartBrothers Patient Support Group logo, hands over-lapping in support

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