It is so awesome to read all of your wonderful messages you left! THANK YOU ALL SO MUCH! Dr. Taylor, pulmonologist for CMH, called yesterday and we discussed the "plan". We both have calls to make and a couple things to get in order but we have a tentative plan that we will confirm on Monday! She wants to start IV Steroid treatment this week, or at latest, next week. Gunar will have to be in the hospital for a 3 day treatment of IV steroids every month for the next 6-12months. He has to be in the hospital for close observation during these treatments due to risks with high blood pressure, kidney issues, and blood sugar issues caused from the high doses of steroids he will receive. We have to discuss with his immunologist on Monday to determine how often (most likely every week or every other week) for him to increase his IVIG infusions since the steroids will also totally deplete any immune system he has. After the steroid treatments we will do a year or more of Azithromycin (antibiotics) infusions. This is all related to the Brochioloitis Obliterans. As for the Pulmonary Hypertension issues, she discussed with Dr. Kaine, cardiology, that the biopsy revealed a lot of "clots" within the lung tissue which meant he has some type of blood disorder. This is what they feel is causing the PTN and, in turn, causing the Emphysema. Dr. Kaine felt this answered a lot and another heart catheterization was in order to look "closer" and differently at the PTN to determine the necessary treatment. Dr. Kaine is to call me Monday to let us know when this will be scheduled but we believe it will be very soon. They will also be consulting with HemOc (Hematology/Oncology) docs so we can make sure we test and determine what the blood disorder is. This will happen while he is inpatient for treatment. I know this is all confusing as I understand it all but my head is in a fog still! We are doing good and just holding on to each other for support. We just pray for the answers and some good guidance on how to move forward with all aspects of life. Again, it means so much to have such wonderful support and we know life goes on for everyone, yet you all take the time to support, love, and pray for our family! I will update again tomorrow night or Tuesday when we have the exact timing of all of this at hand! Love and prayers to all!
Posted on: Sun, 09 Jun 2013 13:56:47 +0000
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