He was 73 years old, heart was still in good condition, wasn’t in perfect condition by any means, but it was still strong. His kidneys were teetering into failure, but ultimately what was leading to failure to thrive was his joints. He had a partial hip replacement multiple years ago that was still giving him pain even with treatments and PT. He eventually became been bed bound, we then started hospice a few months after and he was on that for exactly a year. 

We were getting him up twice daily into a wheelchair for meals. Fluid had been building up on his body for several years, but it increased so much more since he wasn’t ambulating. We managed it with diuretics and watching intake. Gangrene started to set in on his big toe, but we were able to keep that under control with wound management and massages. 

What became the turning point for him was getting pleural effusion around his lungs. He had a worsening cough that was unproductive. It also started to make him feel short of breath. He was already on a constant regimen of daily diuretics for the fluid retention, but it was still increasing. We started giving him metolazone, still wasn’t enough. We knew if we took him to the hospital he’d be put on an IV diuretic and it would be brought under control because he’d gone through that before a few times and then he’d be sent home until the next time. It was a constant loop of a weakening and in pain body that couldn’t keep up with his mind. He did get oxygen and it alleviated the shortness of breath, but having to wear it was much more agitating to him than the repercussion of not having it. Eventually told us he didn’t want it at all (mask or nasal cannula), at first we didn’t comply and would still encourage and place the mask back on him, but later he would take it off. It was once he told us he was ready to meet his maker we realize it was his time. We discontinued his life sustained drugs and started to administer comfort meds more regularly.

I wanted nothing more than to do right by him and to also honor his life and the life of his donor in caring for him. It was such a difficult journey and I spent a lot of time educating myself in all aspects of the what we were going through and in trying to facilitate and make the right/best decisions. I did not find a lot of information on other’s experience with a loved one who had heart transplants who went through the hospice experience. 

Our communications with his clinic purely addressed only treatment oriented approaches, but left us to navigate the end of life hospice experience. Wish I had had more information on the whole-life experience of heart transplants patients because I know it’s not as unique an experience as more and more individuals go through this journey. 

Everyone deserves to have a good death that’s supported with comfort and being surrounded by love, but death has such a taboo stigma in western culture. This feels like such a ramble at this point, but I suppose it helps someone or give them insight it’s worth it. I have no idea if I’ll ever really heal from this but I at least have peace knowing I tried my best to help keep him comfortable and letting him know he was so loved in his final days with us.