I'm going to be in a book!
Yes, you read that right.
So, one of the moderators for the ICP Support/Itchy Moms page on facebook is writing a book about the liver disorder as a way of increasing awareness. She is going to have a section in the book devoted to women's experiences with cholestasis. I volunteered, and since there were many women clamoring to share their stories, the moderator sent me a questionnaire asking me about what my experiences were, my health history, family history, etc. My mom also filled out the questionnaire, and because of our family history of cholestasis, our stories are going to be in the book. My aunt is going to be interviewed as well. The moderator called me last night for a phone interview, where I gave a play-by-play of my pregnancy with Kate. I'll give you the gist of the conversation:
When did the itching start?
I had a day of intense itching at 32 weeks. It was the telltale itching on hands and feet. I decided that if it didn't go away in the next day or so, I would get tested. Took Benadryl that night, and the itching was gone the next day. The itching came back at 35 weeks and wouldn't stop no matter what I did. I happened to have a checkup that week anyway, so I brought it up with the midwife and she ordered blood tests right away.
Where did you have itching?
Everywhere except my back. It was especially bad on my legs. I still have scars.
Did your midwife know what blood tests you needed?
She ordered a Liver Function Test and a Bile Acids Test.
I'll pause here to mention that Hillary (who was interviewing me) commented on how unusual it was that my midwives knew exactly which tests to order. She also commented on how unusual it was for my case to have such a high priority at the hospital too.
Had your midwives worked with women with ICP before?
Probably. I never asked. I was just shocked that I was being taken so seriously. I had mentally prepared myself to put up a fight to get tested, and here I was being prepped for blood tests and being told to prepare for a 36-week induction. Thankfully, my numbers were low enough that I was allowed to go to 37 weeks, with extra monitoring of course. At the time, I thought my midwives were overreacting, but now I am very grateful that they took me so seriously, especially after reading about other women having to fight so hard every step of the way. If I'm still in the area when I have my next child, there is no question who I'm going to have my baby with.
We also talked about my family's history of progesterone deficiency--she thought that was very interesting. She said that she would love to get a lab and just study my family! I didn't know how to feel about that. We commiserated about the itching--only a fellow "itchy mom" understands just how horrible the itching is. We talked about how our husbands reacted, and apparently Stephan's reaction was classic. At first, Stephan didn't believe the itching was anything serious and that I must be overreacting. Then when the midwife ordered the tests and told us to prepare for a 36-week induction, he was practically paralyzed. Apparently that's normal!
I am really happy and excited to be a part of this. I feel as though the itching from hell wasn't for nothing! I also found out that ICP is a dominant gene, so unfortunately, Kate almost certainly has the gene and will likely have ICP when she has her babies. I am hoping that my participation in this project will make it so there are even better treatments for it when the time comes. As it is, they were able to do a lot more for me than they were able to for my mom when she had it.
And yes, I will keep y'all informed throughout the process.
So, one of the moderators for the ICP Support/Itchy Moms page on facebook is writing a book about the liver disorder as a way of increasing awareness. She is going to have a section in the book devoted to women's experiences with cholestasis. I volunteered, and since there were many women clamoring to share their stories, the moderator sent me a questionnaire asking me about what my experiences were, my health history, family history, etc. My mom also filled out the questionnaire, and because of our family history of cholestasis, our stories are going to be in the book. My aunt is going to be interviewed as well. The moderator called me last night for a phone interview, where I gave a play-by-play of my pregnancy with Kate. I'll give you the gist of the conversation:
When did the itching start?
I had a day of intense itching at 32 weeks. It was the telltale itching on hands and feet. I decided that if it didn't go away in the next day or so, I would get tested. Took Benadryl that night, and the itching was gone the next day. The itching came back at 35 weeks and wouldn't stop no matter what I did. I happened to have a checkup that week anyway, so I brought it up with the midwife and she ordered blood tests right away.
Where did you have itching?
Everywhere except my back. It was especially bad on my legs. I still have scars.
Did your midwife know what blood tests you needed?
She ordered a Liver Function Test and a Bile Acids Test.
I'll pause here to mention that Hillary (who was interviewing me) commented on how unusual it was that my midwives knew exactly which tests to order. She also commented on how unusual it was for my case to have such a high priority at the hospital too.
Had your midwives worked with women with ICP before?
Probably. I never asked. I was just shocked that I was being taken so seriously. I had mentally prepared myself to put up a fight to get tested, and here I was being prepped for blood tests and being told to prepare for a 36-week induction. Thankfully, my numbers were low enough that I was allowed to go to 37 weeks, with extra monitoring of course. At the time, I thought my midwives were overreacting, but now I am very grateful that they took me so seriously, especially after reading about other women having to fight so hard every step of the way. If I'm still in the area when I have my next child, there is no question who I'm going to have my baby with.
We also talked about my family's history of progesterone deficiency--she thought that was very interesting. She said that she would love to get a lab and just study my family! I didn't know how to feel about that. We commiserated about the itching--only a fellow "itchy mom" understands just how horrible the itching is. We talked about how our husbands reacted, and apparently Stephan's reaction was classic. At first, Stephan didn't believe the itching was anything serious and that I must be overreacting. Then when the midwife ordered the tests and told us to prepare for a 36-week induction, he was practically paralyzed. Apparently that's normal!
I am really happy and excited to be a part of this. I feel as though the itching from hell wasn't for nothing! I also found out that ICP is a dominant gene, so unfortunately, Kate almost certainly has the gene and will likely have ICP when she has her babies. I am hoping that my participation in this project will make it so there are even better treatments for it when the time comes. As it is, they were able to do a lot more for me than they were able to for my mom when she had it.
And yes, I will keep y'all informed throughout the process.
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