Long time, no write! SORRY!! It has been a whirlwind of a summer with moving and chasing after Ethan- this kid gets booked up easily! I have a lot of updates, and I will separate them into a few upcoming posts.
We did our family photo shoot this fall with one of my best friends Tracy (check her out http://www.tracyrodriguezphotography.com/ – she is incredible), and it really made me realize how far we have come in the last 3 years. Ethan was discharged from early intervention last week, and we are hoping to get more physical therapy for him when he starts pre-school next fall. He started off so tiny and fragile, so it is remarkable to see how “normal” he turned out. We still have a little work to do on motor skills, but all in all the boy keeps me on my toes! He finally settled in to our new house, after a long period of asking to “go back to the old house!”. I had to avoid driving anywhere in the vicinity of old neighborhood, since he would start crying to go home. Ethan is still rear facing in his car seat, yet he has an amazing way of knowing exactly where we are! With a lot of binky time, his stuffed animals, and plenty of cuddles, he now says “I like the old house better than the new house.” Dedham has been great to us so far, and we have gotten involved with Dedham Parent Time for some fun activities and play groups.
On to the title of this post, I had a biopsy last week that gave us a little bit of a scare, and gave me a lot of perspective. I have come off of the dreaded prednisone (UGHH) this summer, and so I have had frequent biopsies at Brigham to ensure that I did not develop rejection. I have been having a few frustrating symptoms (namely GI and migraines) that I have been working on fixing in the last few months, but overall the ticker has held up very well. I got a call the day after my biopsy saying that something showed up in my blood indicating potential antibody mediated rejection, and that we would need to wait for further blood staining on Monday to see if it was accurate. The weekend was long, and so was Monday- I didn’t get a call until Monday, right when we were getting ready to go Trick-or-Treating.
My biggest fear would be that the test was positive. This could mean hospitalization, and very invasive treatments like plasmapheresis, high dose steroids, and even chemotherapy. When my nurse called to tell me the staining did indicate AMR, she asked me to go in the following day to get a few more labs so we could come up with a treatment plan if necessary. Needless to say, I did not feel like trick-or-treating. I talked myself into it- after all, I never want my health issues to get in the way of being the best mom I can, and I wanted to join my boys. I’m glad I did. Nothing makes me smile like seeing a bunch of adorable kids in costumes. My little elmo was quite the hoot!
This week was one of the hardest ones for me. I was obsessively reading PubMed studies and transplant forums, and I barely slept. I was panicking about who could take Ethan if I needed to be hospitalized, and I worried that this type of rejection is known to damage the tissue of the heart, creating shorter longevity of a donated organ. I was irritable, exhausted, and sad. It did not help that Ethan was coming off of a monster sugar high and was pressing my every last button, but we got through. On Thursday, I was having some chest pain that I thought may be from moving some heavy boxes, but I was getting scared it was rejection related. I was thinking of going to the ER that evening, when I got the call that it was a false alarm. There were indeed antibodies in my blood, but they were not against my donor heart. They were likely related to one of my autoimmune diseases. RELIEF!! Here is the power of placebo- I literally developed chest pain and fatigue when I was told I was sick. I spent a lot of time on the couch feeling sorry for myself! I feel so unbelievably lucky that this was a false alarm, only now I am investigating with my doctor which autoimmune issue is flaring up for me. I have a few guesses, and I did a lot of lab work at my physical on Friday, so I am hoping to have some answers soon. One thing that did already pop up was how high my cortisol levels are, which makes a lot of sense based on how I feel most of the time. We are looking at evaluating for Cushing’s Syndrome. Hopefully, we can come up with a good plan before anything gets too out of hand.
Lesson learned- no googling and no reading studies before I have the final diagnosis on everything. (Not going to lie, I have been researching cortisol abnormalities A LOT) I guess I never learn- the obsessive personality never goes away. I am a dork and I love reading medical studies!! Feel free to comment if this has been an issue for you, and how you treated it.
More blogs to come soon. My Aunt Corinne was just here from Israel for a long visit, since it was my amazing Zayde’s 95th birthday party. What an honor to celebrate such a healthy, wonderful, full of life man. He still gives a great bear hug, and I love that he gets to know his great grandchildren. Aunt Corinne encouraged me to keep up the writing, so that we can stay in touch more, and it motivated me to get back to the blog. Love you Aunt Corinne!