Primary Graft Dysfunction

So the term for what Gracie's heart is doing is called primary graft dysfunction. This only happens in maybe 25% of heart transplants nationwide and has only happened less than a handful of times in the last 20 years at PCMC. Most of the 25% that had graft dysfunction had other problems like a bad cross match, pulmonary problems etc. Through testing, they found Gracie to have NONE of these problems. Which means...........Gracie is a complete MYSTERY!! We talked to the new heart doctor here, Dr. Kaza (the doctor who went to get Gracie's donor heart). He has personally performed about 60 pediatric heart transplants and has had this happen only ONCE.

I copied and pasted the following from the National Heart Lung and Blood Institute's website:

Primary Graft Dysfunction
The most frequent cause of death in the first 30 days after transplant is when the new donor heart fails and isn't able to function. This is called primary graft dysfunction. Factors such as shock or trauma to the donor heart or narrowed blood vessels in the recipient's lungs can cause primary graft dysfunction.


They did an echo on her heart yesterday afternoon and found that the left ventricle is still not squeezing. The right ventricle is but the left is not. Really no change from post surgery. They will probably trial her off the ECMO machine on Thursday or Friday. Based on the echo yesterday, our transplant doctor is less optimistic now than she was before. I think all the doctors have hoped that Gracie's left ventricle would improve with time and they have not seen that happen.

Yesterday she was bleeding a lot through the cut down on her wrist. So much so, that they had Dr. K come in and put a few more stitches in it. This morning it had slowed down. We talked to Dr. K for quite a while last night about her situation. He said he was discouraged by the findings of the echo that found her left ventricle was still not working. Anyone who knows Dr. K, knows that 'discouraged' is about as negative as he gets. He seems to be the eternal optimist. He was the only one who thought she had even a slight chance of coming off ECMO the first time around. He also said that the chance of her heart recovering at this point is 'unlikely'.

So, this is what I understand is going to happen. They will trial her off the ECMO machine in the next couple of days. They do not anticipate her heart recovering. If (and it sounds like when) she fails the trial, they will put her back to full function on the ECMO machine and wait for a new heart. In her condition, she would only last on ECMO for maybe two at the most, four weeks while waiting for a new heart. The team is discussing whether or not a VAD (ventricular assist device) would be a good idea for Gracie. This would enable her to wait a lot longer for a heart. Getting a VAD put in is a risky procedure in and of itself so they may not recommend it for Gracie.

Today has been fairly quiet for her. Other than her bleeding, there is nothing else they are working on. It sounds like our only real hope for her is for her to get a new heart. Dr. K said he would take a new heart for her at any time but that she would have a better chance of surviving re-tranplant in a few more days when she is not as swollen etc. So let's pray for round two this weekend!! I'm totally up for another 13 hour surgery ;)