As hard as I try, the thoughts, memories, and manifestations of losing Regina keep flowing in all of the time. In spite of what may look like a pretty good face, I still hurt terribly. Most of what I do now – movies, work, spending time with friends, reading, bantering – is therapeutic, I suppose, but it mostly all acts as a band-aid until a greater healing can take place.
My Haven group wants to meet in Feb. I have mixed feelings about that. It has nothing to do with them, of course. They were and are wonderful people. I admire their courage in wanting to meet and catch up after the holidays. I suppose if they can be strong like that then I need to be strong, too. I haven’t sent my response yet – I don’t know what to feel. It will dredge up old memories but, then, they are struggling, too, so who am I to feel like I hurt more than them? I need to work through this.
And today, I received a hefty letter – the document is seven pages long – from Washington Hospital Center. I couldn’t imagine what it would be – more bills, insurance issues, or something? Instead, it turned out to be the official “Final Anatomic Diagnosis” signed and sealed on Jan 23, 2013 by one of Regina’s surgeon doctors. I have been sitting here for several hours just holding the document – I don’t know what to do except share some of it with you.
As best as I can gather from this extremely complicated document, everything that I have been told to date about Regina not surviving her transplant still holds. The autopsy report, as you would expect, is very detailed – every organ and part of her little body is discussed. It’s hard to read but it is also probably the best and only thing that I will ever have that describes what happened during the fateful week after her transplant.
I don’t mind sharing – I would like to share. In among a great deal of other technical information, is the following:
This is a 56-year-old female who was sent to WHC for evaluation of LVAD/transplant workup from Potomac Hospital. She has a history of ALCAPA with CABG, constrictive pericarditis, HTN, HLD, MI, CHF, Afib s/p pacemaker, liver congestion secondary to HF. She has also had a remote history of breast CA s/p left mastectomy. She presented to Potomac initially with severe SOB and volume OL and was started on Dobutamine. She was then transferred here for transplant evaluation. She received a heart transplant on 06/12/12. On 06/13, she developed ischemic changes in both lower extremities. She received ECMO on 06/15/2012 because of her failing cardiac status. She developed cardiogenic/hemorrhagic shock status post ECMO placement. Her condition worsened and she expired on 06/20/2012.
The cause of death appears to be acute allograft failure.
There you have it. Using online resources, you can figure it all out – if you want to figure it out. I did but I really didn’t get a better understanding of the situation than what I already had.
Thinking back I think that the doctors had been extremely open with me and us during that hard time – as much as I could have expected. No issues there. What I perhaps didn’t fully understand – didn’t want to understand – was the seriousness of her condition a day or two after her transplant. I guess I was assuming she needed some time to do some healing but I now also recall being told that she “was very sick” and that she had gone into cardiac arrest after the transplant and that there was concern about her brain and vital organs no longer being able to function. I suppose seeing her on the ECMO all pretty and pink and healthy – just sleeping – kept me going but I understand now that she was very, very sick during those few days that we sat with her and watched her sleep. Likely, she wasn’t even with us.
Another step in this long and difficult journey, I suppose. I’m glad that I can have information like this. I will say again – I totally appreciate the doctors and staff at WHC. My faith in them – even now – does not waver. Their care and concern was like nothing that I had ever experienced.
Let’s breathe together – in out in out – and keep taking one day at a time. Love those around you and tell them that you love them. Show them that you love them.
I will be ok. Somehow.