It’s 11:00 PM, and I feel like I am ready to start my day. Why am I so wound up and hyper? Prednisone makes me crazy! was instructed to take 60 mg of prednisone for the next several days. (For reference, I seem to have a reaction to even the smallest dose for me of 2.5 )
They have finally figured out what is going on with me. Since I last updated, I have fallen apart a little bit emotionally and physically – I knew something was wrong with me for all of these weeks. The initial antibody mediated rejection was a false alarm, and I was left to investigate if there was another autoimmune process occurring in my body. I called in the clinic last week because I had gained just under 10 pounds of fluid in a few days. This is very triggering for my ptsd – my horrible memories in early pregnancy before I was diagnosed. It was hard to bend over and tie my shoelaces, put rings on, wear my clothes, to run or do anything overly intense, and I would’ve questioned every food I ate at to see if it was contributing to the gain. These last few weeks I have felt incredibly anxious and sad as I experience these feelings that I thought I would never have again post transplant.
***I do it all for this one and the little one on the way (and Andrew of course!😉 ❤️) top photo credit by Tracy Rodriguez Photography , my amazing BF who has come by to watch Ethan a lot while I have these appointments. Love you Tracy!!***
The doctors did an emergency echocardiogram, and it looked great! We then thought this fluid overload must be something related to the endocrine problems that I have been having, but my Cushing’s test came back clear, so we were back at square one. Luckily, my treatment team spotted one of my tests called the pro BNP level, and it was just about as high as when I was in heart failure (in the 1200s- anything about 400 is usually heart failure). Something just did not feel right. Luckily my nurse insisted on getting me in for a biopsy, as the rapid weight gain just did not make sense. I found out today that I have 2R rejection. This means that my body is actively fighting against my heart, and they found two spots of damage on my heart yesterday. When I hear that, it makes me want to fall on the ground and cry. But, you know what? I can’t. Ethan is watching me as I am on the phone with my nurse, and he is so intuitive and understands so much. I smile, pick him up, and give him a big hug and a kiss. I know that my doctors can fix this. If you see me in the next few days and I am acting crazy, I blame it on the steroids ;-). There also increasing some of my other medications, and I will now be on prednisone long term until somebody makes a better, less disgusting medication. The bottom line is, we have another baby coming in a few months, and I have her and little man to take care of and chase around- so they will clear this rejection quickly and I will be back on my feet! I am lucky that all of my questions over the last few months have been answered.
To my transplant sisters and brothers, I will say it now and I will say it again – trust your gut instinct! I feel like I am so aware of how my body feels and looks. That is sometimes an annoying quality to have, but in this case the amount of swelling and puffiness I felt just truly made me believe something was wrong. I was right! Call the team if something ever feels off!