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March 8, 2011 - A Discouraging Month & First Allomap Blood Test

Hi Everyone!


It's been a while since I last wrote an update, so I have a lot to catch you up on!


This past month has been pretty tough for Greg - and a bit discouraging. In many ways he feels like he hit a plateau in his recovery - he seemed to be doing better and better for a while but started to have less energy and stamina. Even walking up the 8 stairs to our apartment became pretty difficult for him, leaving him winded. He also seemed to be getting sick over and over again with the same sore throat, achy muscles, stomach aches and other cold/flu symptoms. But most alarming was the fact that he was experiencing so much dizziness and had actually fallen down 5 times in one week.


On Feb. 28th he had a cardiopulmonary stress test and was also able to talk at length to Dr. Desai about how he's been feeling. Dr. Desai was pleased with how the stress test went - and though there is no "good" or "bad" result (they are just finding a base-line to use for his cardiac rehab) it was exciting to see the difference in how he did this year vs. almost exactly 1 year ago (which happened to be the day that Dr. Desai first mentioned the ARVD diagnosis and suggested we go to Johns Hopkins - a significant day for sure!).


Dr. Desai suggested that Greg see an ear/nose/throat specialist because the dizziness issue sounded like a problem with his inner ear. Thankfully none of the problems he's experienced are heart-related issues. The first available appointment is April 7th. He also explained that the decreased energy and stamina could be coming from the decreased Prednisone and pain killers. Greg has been on such high doses of both for so long that they have masked how much of a toll the surgery had on his body. Apparently it's common for patients to feel totally wiped out when the Prednisone doses decrease since it is a steroid and gives people extra energy and alertness.


Yesterday, Greg had another biopsy and more blood work. He also had his first Allomap blood test. It's pretty complicated to explain, but transplant doctors are trying to reduce the number of biopsies patients need to have due to the associated risks and pain experienced (Greg doesn't get any pain medication or sedatives during his biopsies - ugh!). They've decreased the number of post-transplant biopsies over the years, but a recent development is the Allomap blood test. It doesn't give a clear yes or no for rejection like a biopsy does, but it gives a % likelihood that the patient is experiencing rejection. If there is a high likelihood of rejection, a biopsy is performed. If there is a low likelihood of rejection, the biopsy is skipped! Yesterday's Allomap test was done to give the doctors a baseline for Greg so that they are better able to interpret his numbers. Hopefully throughout the year he'll have more Allomaps and less biopsies!


His biopsy came back with a level 1 rejection, which means his doses of Prednisone will decrease again! However, his blood tests came back with him having a low white blood cell count. This is probably due to high doses of one of his transplant meds, so they are decreasing the amount Greg takes in hopes that it will restore his WBCs. On Thursday he has to go back to the hospital for another blood test to check to see if there's any improvement in his WBCs. If not, he'll return to the hospital a few hours after the test to get a shot of a medication that should stimulate WBC production. We're unsure what they will do if his WBC count doesn't improve at that point, but we are hopeful that it will.


His low WBC count is likely the cause of why he keeps getting sick over and over again. It's nice to finally have an answer! Greg's transplant coordinator is hoping that his stomach aches will go away in the next few days with the decrease in medication, and that once his WBC count improves, his immune system will be working better and will keep him healthier. As they increase his WBC count there is an increased likelihood that his healthier immune system will try to fight his new heart - so please pray that he doesn't experience rejection.


We are in the process of setting up Greg's first cardiac rehab appointment so that should begin in the next week or two. It's an exciting, but intimidating, step back toward normalcy.

So that's a really long and detailed update, but now you are officially caught up! As Greg faces a lot of new steps in his recovery, we both are grateful for your continued prayers - thank you!


Love, Elise



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