Those of you who follow my blog and Facebook page may have noticed that I have been MIA from the blog lately, and I have neglected to address the "elephant in the living room." Call it a busy schedule...or denial....or exhaustion....or a little of all of the above. I think I have done a decent job of holding everything together over the past month, but the thought of sitting down to write about it did not appeal to me.
Today, I'm in a better place, so here it goes.
On December 19, 2013, I brought Elise for "routine labs." Typically, I wait excrutiatingly long hours following lab draws to get a call with results, but this day was different. When my phone rang with the TCH number at 9:30 a.m.-- about 15 minutes after I arrived home-- I knew something was very wrong. Our transplant coordinator said, "Erin, don't panic (yeah, right!) but please bring Elise back to the hospital right away to redraw her liver panel. She gave me "the numbers," and if I had had a chance to eat that morning, I would have probably been sick. Of course, I did bring her back, but the results were the same; these "numbers" were real.
AST 531 (up from 64,) ALT 417 (up from 66,) GGT 72 (up from 17)
Elise was admitted to TCH for a liver biopsy the next morning, December 20, which confirmed mild rejection. Of course, we received results of Elise's biopsy on a weekend, and I'm pretty sure this was the first time this resident MD ever presented results of biposy showing rejection. She was using those vague terms that I despise such as "consistent with" and "suggests...." I let her finish her review, and then I asked, "So, is this rejection?" She said, "It shows inflammation of the liver that is consistent with rejection." I asked, "So you will treat for rejection?" She responded, "Yes." Finally, I asked, "On a scale of 1-10, "1" being the mildest rejection, and "10" being the most severe rejection, how do you rate it. Our resident MD looked at the attending physician, a GI doctor, who said he would rate it a "4," but he suggested I discuss the results more thoroughly with the hepatologist, Dr. Fishman, on Monday.....as if I wasn't already emailing him in my head.
Shortly after the biopsy results came in, Elise was started on high dose IV steroids while hospitalized at TCH. Thankfully, the side effects were minimal, other than a largely increased appetite. Since Elise had no physical symptoms of illness whatsoever, she and I made the best of our 3 days there. We took walks to Starbucks and to the ice cream shop; we walked around in the gift shop and bought Elise little "treats" and "surprises" to reward her for being such a trooper; we visited the child life specialist; we read books in the library; we saw Santa Claus; we did "arts & crafts;" we played with toys in our room. Grammie & Paw visited, and so did Daddy and Ethan. Although I was terrified on the inside, I did my best not to show it or reflect that on Elise. Also, since Elise had no symptoms, I advocated for her to be left alone at night--no q 4 hour vitals, or even q 6 hr vitals. The team was very reasonable and did issue an order, "do not disturb between 9:00 pm and 5:00 am."
While Elise was in-house at TCH, our sweet little liver friend, baby Madelyn, was also inpatient...in the critical care unit....fighting complications of her liver transplant. She was briefly re-listed for a second transplant and did actually receive an offer for a new organ; however, she was too sick and therefore unable to undergo the second transplant. At each opportunity--when David was there and able to stay with Elise--I ran down to visit Madelyn and her mommy, my dear friend Amanda. We talked, we prayed, we hoped, we pleaded with God for Madelyn's miracle. In all honesty, Elise's situation was put into perspective by the blatant direness of Madelyn's predicament.
On December 23, 2013, after a thorough review with our hepatologist and liver team, and after Elise received her 3rd dose of IV steroids, we were discharged home....with an increased dosage of anti-rejection medication of course.
On December 26, 2013, I had to bring Elise for repeat labs at TCH. Normally, I would have texted our friend Amanda, to ask what kind of coffee she would like. It was always "our thing" that I would bring her a a vanilla latte or a caramel machiatto when we were there, and we would visit. But on this particular day, I just didn't want to intrude, and I was heading towards the elevator when I ran into Amanda's mom, "Coco." She hugged me, and she said she was going to go get Amanda, because she would want to see me. Amanda came out, and the raw emotion, and primal mother instincts were evident. As we talked, she told me, "We're going to let her go today." She talked about how hard Madelyn had fought and that as her mother, she had to support her if she needed to go; she did not want Madelyn to feel that she was disappointing her. I didn't know what to say, so I just lifted her up. A mother has to do what she has to do, and let me tell you, Amanda was never a better mother than she was on that day. Around 3:15 pm, I received a simple text, "Madelyn smiled when she saw Jesus." Heartbroken. That's what I felt. But when I spoke to Amanda later that evening, we talked about how Madelyn did in fact receive the "miracle" we prayed for; Madelyn is healed now and free of pain; she earned her golden angel wings and is playing with the angels. I attended her memorial service, which was beautiful. Her grandpa, "Roro," pointed out that Madelyn's life was not measured in number of days but in the number of lives she touched. How true. At the end of the ceremony, we all released muti-colored balloons for her, and I know that she enjoyed them.
In regards to the treatment for Elise's rejection, Dr. Fishman did not initally prescribe oral steroids for her to take at home due to her known EBV issues. Steroids are a type of immuno-suppressive, and they typically cause EBV blood levels to rise. For about 2 weeks, it appeared that Elise's labs were improving, which was wonderful. We celebrated a wonderful Christmas at home as a family; David and I went out for our anniversary on December 30, and then we brought in the New Year at our fellow liver family's NY Eve fundraiser for liver research.
This past Monday, January 6, however, things went off-course. Who was I to expect things to go just as planned? And whose plan was this anyway? I was reminded of a line from John Steinbeck's To A Mouse, "The best laid schemes o' mice an' men gang aft agley, an' lea'e usnought but grief an' pain for promised joy."
Elise's "numbers" were elevated again: AST 250, AST 287, GGT 97
Fortunately, when our transplant coordinator calls with bad news, she always follows it up with a specific plan. In this particular instance, the "plan" was to start Elise on the oral steroid medication Budesonide. The tricky part was that Dr. Fishman ordered the inhalation formula of this med, which is designed to be administered via nebulizer/ breathing treatment. The pharmacist and I both spoke to our coordinator multiple times to clarify and ensure that the order was indeed to take this medication by mouth. When I went to the pharmacy to pick up the medicine, I was only given 2 boxes--or approx 6 days supply--and I was informed that our insurance was only covering the 2 boxes, and that the remaining 12 boxes was "outside of the appropriate clinical dosing parameters." Of course, I called our insurance company, only to be told, "Yes, your coverage guidelines only allow Budesondide up to 2 boxes/month, for the treatment of Asthma or other respiratory conditions." I responded, "Okay, great, well what does our plan cover for the treatment of rejection of a solid organ transplant?" The response?? "Ma'am, I would suggest you file an appeal." HA! I'm one step ahead of you, buddy. OF COURSE I am filing an appeal.
Today, January 10, 2013, Elise had repeat labs done again, as well as a CT of her abdomen, chest, and neck. The labs were ordered to ensure that the steroids are doing their job. The CT was ordered mostly as a precaution, "to take a look around," to look for any suspicious areas, and most importantly to provide a baseline CT in case we encounter any more serious EBV or PTLD (post-transplant lymmphoproliferative disorder) issues. I am thrilled to say that Elise's current labs are very promising; her liver "numbers" are definitely going in the right direction, and this new treatment plan seems to be working very well.
AST 136 (down from 250,) ALT (down from 287,) and GGT 78 (down from 98.)
We are instructed to keep her steroid dose exactly the same for now, and we will also be keeping her anti-rejection med (Prograf) dose the same, as her blood Prograf level is 4.4 (goal range 3-5.) Repeat labs are ordered fo Tuesday 1/14/14.
I'm not really sure how many of you are still following this blog and/or Elise on Facebook, but if you are, or if you ever have, I thank you. We appreciate your support, prayers, and encouragement.
