I was with a patient this week and something that happened that made her comment: “You should write about this in your blog”. And I laughed and said: “I should, shouldn’t I?”.
So I am.
This patient (I’ll call her Sally) had come for her weekly appointment at the obstetric medical clinic (obs med) at Queen Charlotte’s & Chelsea Hospital that morning. Obs med is a clinic held for women with complications of pregnancy requiring specialist input. Sally was there because she’d had ICP (intrahepatic cholestasis of pregnancy) before and had started itching quite early on in her pregnancy. She’d also previously taken part in Professor Catherine Williamson’s ICP studies and was very happy to do so again in this pregnancy.
Sally hadn’t got off to a great start with her pregnancy (for reasons I can’t disclose), which was another reason for her to be attending obs med. But despite her itching all her bloods were normal and things were going well.
The week before, Sally had agreed to take part in BEATS, a relatively new study of the professor’s looking at the use of fetal ECG in pregnancy (because of the potential link with bile acids and fetal heart arrhythmia in unborn ICP babies). The device records both the baby’s and the mother’s heart rates. I also took Sally’s bloods at the same time to check her bile acids and liver function. She then went off with her pads fitted (see picture that demonstrates what it looks like) and working (I’m always relieved when I fit them and they work!) and with me feeling happier that her itching had calmed down.
I like to get bile acid results back as quickly as I can so that I can alert the doctors if anything is abnormal, but despite knowing from the research that levels of itch don’t always correlate to the level of bile acids, I was still a bit surprised when later that day Sally’s bile acids came back raised for the first time in her pregnancy.
Sally had ICP again.
So there we all were yesterday in clinic room at obs med, with the consultant, discussing next steps. I sat there and watched Sally. She looked really tired. The reason became clear. She wasn’t sleeping because the itching was back with a vengeance. Sally couldn’t stop scratching. She raked at her legs and her thighs. She rubbed her hands together really hard. I could see the skin going red and getting hotter. The consultant was talking to her and I could see that Sally was listening as best she could, but still she kept at her skin. Raking her ankles. Rubbing her arms. Squirming in her seat as she tried to deal with the itch, which was pretty much all over her body. Internally I could find myself feeling more upset the more she did it.
I could see myself sat there.
I was taken back to those endless nights when I couldn’t sleep. When I felt like my skin was on fire because of all the scratching I was doing. When I’d stand outside in the middle of the night with no clothes on because it cooled me down. When I rubbed my feet on the outside coir door mat and made them bleed which was still preferable to the itch. When I used whatever implement I could find to scratch that itch. When I cried with frustration and fear because the itch had become my enemy. Taunting me. Reminding me that I had a condition that could kill my baby.
I wanted to do something for Sally. To stop that itch for her. But I couldn’t. Worse still, I could hear the words forming in my head that are the worst words you can say to someone with ICP.
I wanted to say to Sally: “STOP SCRATCHING!”.
Stop scratching. How could I think that? Me. Who’s had four ICP pregnancies with that bloody horrendous itch each time. I KNOW you can’t stop scratching. And yet the words were there. In that moment I realised just how hard it is for anyone who is connected to a woman who has ICP not to tell them to stop. I was instantly regretful of being terse with people who had said the same thing to me, because I know that the directive comes from a place of just wanting to make it all go away for the mum-to-be. I kept quiet.
The appointment ended. Sally and I went down to the pharmacy to collect some more trial drugs (this amazing woman is also taking part in a trial called PITCHES), and as we were standing at the zinc counter I put my hands on the surface and immediately felt how cold it was. I motioned for Sally to come and put her hands on the counter too. The blissful look on her face as her skin cooled down was wonderful to see. She lay her arms on it and we started joking about how she should take off all her clothes and just lie there. We didn’t move away; Sally stood there and angled herself to get as much bare skin on the counter as she could. I think the pharmacy staff were a little perplexed and kept coming over to ask if they could help. I started to try to explain what was happening, but it’s not easy to go through the whole explanation of ICP and the itching, so I gave up trying. It didn’t matter what they thought; if it was helping Sally, that’s all that was important.
And that’s when she turned to me and said: “You should write about this in your blog”.
So I have.