Post-Rejection Biopsy #2

Yesterday, Steve and Sarah went back to Primary Children’s at the crack of dawn for a follow-up biopsy to check Sarah’s rejection. Everything went well. I’ve been told that Dad didn’t remember where to go, Sarah was really calm when she went in for her cath, the anesthesiologist was really cute, recovery was easy, Sarah bossed the nurses, the transplant team at clinic was super excited to see her, and the stop for lunch and browsing at Modern Design with her dad afterward was wonderful.

I have to tell you what Steve said about Sarah bossing the nurses. (This is just a small example of her newly-developed assertiveness in her own health care. Dr. Molina, one of the transplant cardiologists, even commented about how much more confident she is now.) In recovery, there’s a protocol of how long patients need to be “watched” following certain procedures. Since it was just a biopsy and pressure check (only through her neck), and she uses conscious sedation, they usually like to keep her there for a couple of hours. Last time we went in, I think they only kept her for about an hour or so because she was doing so well and heading down to cardiology for another hour afterward for echo and clinic. Well, yesterday, when it had been a half hour-ish, Sarah said she was feeling great, and wondered when she could go. They told her she’d need to stay until 12:30…about 3 hours. She immediately told them that was not necessary because of a, b, and c… and then asked them to talk to the doctor. Apparently, the doctor’s orders were wrong and also didn’t include anything about her echo and cardiology clinic. So, the doctor wrote new orders, Sarah got her way, and after they found her a wheelchair she said she didn’t need, they were on their way downstairs.

REPORT: We got a call late in the afternoon from transplant team. Sarah’s biopsy showed that she still has mild rejection, but it’s improved. (YAY!) Sometime I’ll explain the scale and what all the letters and numbers mean, but the two things we were concerned with was the C (cellular) and V (vascular). The scale goes from 1 to 5 (1 = 0, meaning none… no clue why). C is down to 2.5 from 3, and V is down to 1 from 2.

Here’s the information she got from the coordinator, including our plan of action…

Your biopsy cleaned from C3V2 ISHLT1R, pAMR (-) to C2.5V1 ISHLT1R, pAMR (-) which is very mild cellular that a lot of times we do not treat.

1. Discontinue Nystatin, Ranitidine, and Valcyte
2. You will continue Septra through the first year
3. Decrease prednisone (steroids) to 7.5mg (1 1/2 tabs) by mouth once per day for 2 weeks. On 2/10/14 decrease to 5mg by mouth once per day.
4. Return to clinic for routine visit in 1 month.
5. Make appt for adult hepatologist at the UofU.
6. Labs on Monday (tacro and CBC).

So, she’s coming down on the steroids and discontinuing all the other yucky meds that combat problems caused by them, and returning in a month. They also told her that they won’t do another biopsy then (but wait another month) if everything else looks good, and she’s still feeling great. So, she’s happy and feeling quite comfortable with the plan. She even did a happy dance this morning when she swallowed a few less pills and realized she didn’t have to chase them with a nasty Nystatin swish and swallow. Life is good.

She and Steve are so happy about the results I hesitate to even add my maybe-a-tad-bit-skewed feelings about it. But, we decided in the very beginning to keep this blog real and honest. I’ve been on a journey of self-discovery the past few months, and have realized that I have to be more honest with myself and face my feelings so I can move past them. So, here goes my self-talk (feel free to skip it if you’re also content, and don’t need it)…. First, I need to say that I am very happy that things have improved. And very grateful. However, it makes me a little nervous to not be checking for a while to be absolutely sure the rejection is still improving. After what we’ve been through this past year, I though I’d learned to trust more. I realize that in comparison to everything else we’ve seen and dealt with, this is such a tiny issue. But I’m working through the frustration I feel about not having this resolved (at least in my mind) yet. I’m a fixer, and when things aren’t fixed, I want to keep working at it until it is. Faith and prayer, along with a mixture of trust in the Lord and a team of very qualified doctors and nurses are all I have in my tool box. (That certainly seems like enough, doesn’t it?) As we speak, I’m also working on a healthy dose of positive thinking and gratitude. The facts are: 1-Sarah is better than she was a months ago. 2-The transplant team hasn’t ever given me a reason to not trust them, and they’ve been doing this a lot longer than I have. 🙂 3-There is a plan (one they’ve probably used lots of times before) that she will probably respond to perfectly. 4-I can’t fix this. I can only fix my perception and my attitude. 5-I have everything I need, and so does my sweet Sarah. …So, now that I’ve put these thoughts into words, I shall do my very best to let it go…. I’ll put it all back in the Lord’s hands, and trust that whatever needs to happen will. Because God is good. He loves us unconditionally, and blesses with exactly what we need….every time.

~Julia

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