Yesterday we were at Primary Children's for Mason's annual cardiac MRI (to check his coronary arteries) and heart cath/ biopsy (to check pressures and rejection). It was a long day, but Mason always loves hanging out at his 'home away from home'! Who wouldn't when you can lay in bed playing xbox, drinking slushees and sodas, and order any kind of food you want whenever you want! Plus when they know Mason and I by first name when we check into same day surgery, you know we've been there often enough for Mason to feel well loved and be quite spoiled while we are there!
We received the results before we left the hospital yesterday. Once again we were reminded that, "It takes both rain and sunshine to make a rainbow"! Mason seems to usually bring us a little bit of cloudy and rainy weather along with his sunshine..... the little stinker!
I will start with our good 'sunny' news for the day. Mason's arteries look great and very healthy. Hip hip hooray! Coronary artery disease is always a concern for heart transplant recipients. Most of the time when this occurs another heart transplant is needed, which especially with Mason's complicated history we hope that's not something we will have to think about (at least not for a long time). Along with the good news about his coronary arteries, his echo showed great heart function and his cath showed healthy and normal heart pressures. All of this we are certainly grateful for!
The biopsy results is where the cloudy and rainy whether came in yesterday..... Mason has been in chronic mild cellular and vascular (antibody mediated) rejection for two years now. From biopsy to biopsy (about every 3-4 months) it would sometimes improve a little and sometimes a lot, but never completely gone these last two years. Of course yesterday we were hoping for it to be all gone or at least better than his last biopsy in November, BUT it is slightly worse! In fact his level of rejection is right back to where we were exactly two years ago when we so unexpectedly found out he was in rejection. Bummer!!! For those who understand the biopsy rating that Primary's uses it is C3 V3, ISHLT 1r, pAMR 2. At least it is still within the 'mild' range, but even long term mild rejection can cause problems, such as coronary artery disease. At least it hasn't yet, right?! And, his heart function remains unaffected by the rejection also, thank goodness!
The transplant team met and discussed Mason yesterday to come up with a plan of action, before they came and told me the results. For now, he's back up on high doses of steroids, increased doses of prograf, and continued monthly IVIg infusions. When they get back his donor specific antibody blood work (sometime next week) they may or may not get more aggressive with their plan for Mason, depending if there has been a significant increase in these 'naughty' antibodies or not. Dr. Lal also plans to call and consult with the transplant docs at Stanford, to see if they would suggest something else to try and conquer this chronic rejection.
As we have come to learn over the last 7 years, our amazing Miracle Mason 'rainbow' is made up of both rain and sunshine..... but this is what makes him who he is, and that is why we love him so!!! Please remember him and his special heart in your prayers, that we can get rid of this rejection once and for all!
