Dr. Rosenthal did not present Mason's case at Friday's meeting! Darn!
His nurse told me that she believes he still wants to gather a little more research and information before he presents his case and opens it up for discussion with the Stanford Board of Cardiac Transplants (including the surgeons who would perform the transplant). His nurse told me that Dr. R is highly respected by the other transplant physicians and the surgeons, who almost always agree with his opinion, so he wants to be well prepared to get them on board with Mason's case.
Mason's pulmonary vein stenosis that has developed over the last two years (not knowing exactly when it began.....unknown to our dr.'s and surgeons) in combination with his HLHS and heart failure is VERY RARE! Dr. R in his 15 years of experience specifically in pediatric heart failure has NEVER seen this before! Dr Shaddy from CHOP with 26 years of pediatric cardiac experience has only seen this twice. Although they both feel hopeful about doing a heart transplant to his one healthy lung, honestly......this does create many fears and worries for us!!!! I'm nervous, but anxious to hear Stanford's final offer for Mason.
My hope right now is to hear Stanford's views from their discussion before Christmas, because the wait is difficult for me!!! Dr. Rosenthal does plan to present him this Friday. Otherwise it would be at least 3 weeks, until after the holidays, that he would present Mason's case!
Here is a little news:
As for his antibody blood tests that were taken at Stanford, I do have the results.
The IgG test (similar to the one Primary did) showed Class I at 0% and Class II at 91% (which was slightly lower than the 98% found in his test at Primary's) What you really want is to have both classes below 50% for this test. The CIQ test that only Stanford performs shows how many of Mason's antibodies are against the most popular antigens ("bad guys" for a transplant patient, which increase risk of rejection) in the population. His class I are O% but his class II are 45%. In class II he has 2 very popular antibodies. This means 45% of the population have these certain antigens! This is not good, but could also be worse. This would decrease his donor pool.
What does Stanford do about results like Mason's?
They do IVIG treatments, with are IV infusions of Immonoglobulin which are meant to get rid of these bad antibodies (well, "bad" for a transplant patient). The infusions are a 1 day (about 10 hours) outpatient treatment done every 30 days until those %'s come down significantly. Usually they see great results after 1 or two treatments. If we do decide it is the best decision for Mason to list for a heart a Stanford he will need these treatments before he is listed. I'm waiting for Dr. R's answer to my question, "could Mason have these IVIG treatments at Stanford?" Hopefully the answer will be "yes"!
On a side note........
I have people ask me all the time, "How are you?" and usually my answer is, "I'm okay, just taking one day at time". Or sometimes if I don't want to open a discussion at all I say, "I'm good thanks and you?". Last week I had a friend e-mail me and said "she keeps updated on Mason via the blog, but how are you?" This time I gave a truly honest answer: