Transplant Committee, Again

The roller coaster continues in my transplant journey. Results from testing last week were mixed. The echo showed reduced function – from 35% to 25% and very little movement in the left ventricle. The cardiopulmonary stress test was just slightly decreased from six months ago. The right heart cath had stable results. So when I met with my doctor this morning, I was expecting to wait three or six months until retesting.

Instead he wants to present my case again to the transplant committee. My case was originally presented in May 2021 and they agreed that I needed to get sicker before listing due to my blood type and high antibodies (93%). Today my doctor said he believes I am continuing to decline despite the mixed results. He wants to see if my rare genetic condition qualifies for an exception to get listed as a level 2 transplant patient. They may say yes. They may say no. But he thinks it’s worth a shot. If they say yes, I will be admitted to wait for a heart. If they say no, I will need to get sicker before presenting to the committee again.

He also wants to put me on the list as a level 4 if they say no to the exception. Statistically I won’t be matched for like 10 years given my blood type and antibodies. But at this point he thinks it’s worth it for the one in a million shot. He will present my case either this Friday (11/18) or December 2nd.

Two other updates… The Device Clinic interrogated my device. There is four months left on my device battery so the alarm will sound sometime in the month of March. Also my doctor reconfirmed our plan to go directly to transplant and not an LVAD. I enthusiastically agreed. I really don’t want to go down the LVAD route.

With Thanksgiving around the corner, I really liked this reminder of gratitude for all things. I am grateful for many things – including all of you for joining me on this roller coaster. Thank you for your ongoing love and support. The ride is so much better with all of you along for the ride.