So why am I being Wiki-Kristi-A? Not because I feel super guilty for not updating my blog enough, but because we may be facing our first episode of rejection. Gabriella is 10½ weeks post-transplant right now. Her first biopsy just one week post-transplant was a big ZERO, and again at 1 month. Gabriella has been complaining of a sore belly for a few days, along with having a decreased appetite and what we found today to be weight loss. I mentioned this at clinic, but it wasn't until the clinic doctor spent (spent way too long) listening to her heart that it became relevant. In a person with their native heart, they feel heart pain in their shoulder or arm or neck, but in a transplanted patient, their nerves have been severed and have been found to feel that pain in their abdomen. Determining when it is just too many cookies in a 5 year old, or issues with the heart, is difficult, but today the doctor paired it with a gallup sound in her heart- another clinical sign of rejection. There are too many clinical symptoms put together, leading us to consider rejection as the cause.
SO the amazing transplant team that we have (how will we EVER leave them????) got us in for a stat biopsy TOMORROW. That is the true answer to whether or not she is in rejection, and to what degree, giving us a better idea how to treat it. Biopsies are risky in their own right, which is why Loma Linda does not do routine biopsies as frequently as other hospitals. There is risk for injuring heart tissue or valves, risk with the sedation, risk for bleeding and *ahem*stroke*ahem* (we all know how much I love the risk of stroke......). But this is non routine and vital, so we will have this biopsy tomorrow and PRAY for the results.
- I have never had to explain how they rate rejection because ZERO is the one time you can be happy about the goose egg. (Because it is NEVER a good thing when your bank account is a ZERO, or your gas tank, or your bottle of cooking oil when you are in the middle of making cookies). We haven't had to worry about a 1A or 2R.... but rejection is ranked on a scale from 0 to 4, having 2 severities to each grade. -
Gabriella's cyclosporine (immunosuppressant) levels were also low, but they do not feel that is a contributing factor to the possible rejection. Her white blood cells are low again, and her CellCept (the other immunosuppressant) has been stopped for a week to get them back up. This seems to be a trend for this medication, and it is a hard medication to maintain a dose on.... you pretty much have to go off of it for a week and let the cells build back up before you start it again at a lower dose and wait a week for them to get into a therapeutic range.
So, thats the deal. I am treating this rejection as an "innocent until proven guilty" case. Once we have the biopsy results, I will be able to share the verdict and sentencing with all of you. Regardless, it's presence is unwelcome and came into the wrong momma's baby. I won't stand for it, and will protect this precious sparkly heart if its the last thing I do.