She leaves in 5 days so we planned to get our nails done this afternoon. I cut out of work early and met her at 3pm. We waited, and waited, and waited… but we got to chat.
Her doctor was supposed to call her between 4-5pm. Her nails got started around 3:55 and of course he called at 4:11 while the lady was switching off on her fingers. She didn’t want to answer it but I wiggled my fingers for the phone. Gimmeeeeee…
That was a mistake. I should have let her handle it and she could have talked to him later.
I answered and started to talk to him and then she took back the phone. She said a few things but basically just listened to him for a straight 5 minutes and got teary-eyed.
Her Remicade is failing.
First off, they had a phone appt with him 2 weeks ago. I wasn’t on it but they told me about it. He said everything was great. It was all fine! Apparently Sam asked about the low levels of antibodies but he said it was great.
So she emails him on Monday and asks about switching to injections for when she’s away in Washington DC. He responds, they have a back and forth.
Then, he responds back later that day and says, “Actually I was going to call you. I need to go over one of your labs with you again. I received them on weekend. It appears that you are building resistance to infusions, so I need to talk to you guys about options.”
J was so mad. What did that mean? The Dr said all the levels were fine.
Sam didn’t remember all the info. She said on the phone to him, “That was a lot of info can you please email it to me.” I wish he or we could have recorded the conversation and had AI send us the notes.
Sigh.
I had to listen to J rant and rave at me and be upset of why Sam had to email him a question and then he looked at her data. He was supposed to be looking at her data when they had the phone call 2 weeks ago. Sam says the Dr said, he received the “official” copy of the labs. Maybe he was just looking at Sam’s screenshots from her ap. I’m not sure.
In my experience, doctors never look at the whole picture. I have to do all the research myself and then go to them. But to J’s point, Sam knew the level was low herself. She asked him. He looked at the same number two weeks ago vs today. Sam said he repeated the same number.
So I don’t know. It’s up to Sam if she wants to stay with him. Even if he’s a “one-man show”, he’s still incredibly smart and responds back to us. Park didn’t do anything. Well, she did something but still not a fan.
I’m happy he looked at it again and admitted his mistake. Or error. Or whatever it was.
Also, I feel like I have known this for so long. Her scalp has been a disaster area. In my opinion, paradoxical psoriasis, becuase of the Remicade.
I thought I was wrong. I thought I was over-reacting. We had the two derms and the GI tell us she’s fine. Well, she’s not fine.
Option 1 – add a pill. A second immunosuppresent. And monitor.
Option 2 – just monitor
Option 3 – Clean slate and move to Tremfya
I hate this for her. I gave her a hug when we were done with nails and said I was ready for her to slap my face with a tortilla because I gave this to her.
What a gift. I’m an excellent gift giver, I guess.
I told her she just wanted to be Tremfya buddies with me.
I want to overhaul her diet, fix her gut, and fire every doctor who looks at a lab result backward.
But she’s leaving in five days, her nails look great, and right now, she needs a mom, not a medical director.
So I’m going to take a breath, let her choose her path with Tremfya or the pills, and keep my face ready for that tortilla slap whenever she needs it.
I’m including her presentation of why she should apply for the Semester/Internship in DC for the featured photo.
My baby.
