RE-LISTED! And Getting Used to the “New Normal”

On Friday, April 29th, my dad got re-listed on the transplant list to Status 1B. Status 1B means the patient is dependent on medication or a mechanical-assist device. Above Status 1B is Status 1A which is an urgent need for transplant. In my opinion, being dependent on a TAH certainly qualifies for Status 1A but I don’t get to make the rules. Below Status 1B is Status 2, which means a patient is stable on oral medication and able to wait at home. Then there is Status 7 which means the patient is inactive due to a change in condition. Between my dad’s TAH implantation and Friday, April 29th, my dad was a Status 7 due to his weak condition and failed test results.

Receiving the re-listing confirmation at clinic from our MCS coordinator was the happiest I had seen my dad and family in a long time. Also by luck, we got a chance to meet Lance White, another TAH patient of 2 years during our clinic appointment. Lance is special because my sisters and I got a chance to speak with him before my dad’s TAH implantation surgery back in January.  This was facilitated by our thoughtful MCS coordinator. Lance provided my family with optimism, hope and assurance that everything could turn out ok-- and it did.

Since hearing the news of getting re-listed, my dad has found a new motivation and goal to work harder and gather his strength for his future heart transplant.

On Mother’s Day, I stayed home with my dad so my sisters, my husband and Mom could enjoy a nice brunch away from the house. During this time, my dad initiated the desire to walk outside while carrying the 17 lb. Freedom Driver. Before this, I was the ‘bad cop’ who always pushed him with physical therapy and occupational therapy. His motivation and desire to get stronger moved me so much I cried.

Today, we go on as if living with the TAH is the “new normal”.  We are still adjusting to the lifestyle which consists of helping my dad with simple things like getting up from bed, using the restroom and putting on clothes.  In the back of everyone's mind, I know each family member looks forward to the day we get a call that a matching organ is available. However, there’s no telling when this day will come. So until then, it’s best we live life as if the TAH is the "new normal". Anticipating a heart transplant will only make the days, weeks and months longer.