In Motion

Photo by Alex Conchillos on

After 17 months of keeping a holding pattern, we are finally in motion again. Over the last nearly year and a half, we have been waiting. Waiting for doctors appointments, waiting for surgery, waiting for the time to be right. Waiting for this day.

Wait for the day, this day, we get to say, we are cautiously optimistic because I am pregnant! I won’t say we are “expecting” because if I’ve learned anything it’s to expect nothing past the moment you’re in. I’m happy and basking in the excitement of a new pregnancy, but I am trying not to get ahead of myself. One day at a time.

Before I started this blog, I wanted to be able to share my experience with CHI (Chronic Histiocytic Intervillositis) because when I received the pathology report that stated CHI as the cause of Ava’s death, I scoured the internet for anything I could find. I wanted to know as much information as I could about subsequent pregnancies and outcomes. And, there isn’t much out there. I hope that by sharing my journey early on, others who are struggling to find hope in the face of CHI will find my blog and see how everything unfolded for me. I hope that I can ultimately share my knowledge gained with others. And of course, most of all, I hope I can share what a successful pregnancy trying to prevent CHI looks like.

We discussed that with this being my goal for this blog, I would need to divulge a lot of personal information and in the very early days of my pregnancy so that it will all be as accurate as possible rather based on potentially sketchy, pregnancy-brain memory. I knew going in I would have to be vulnerable, so here it goes.

4 weeks, 0 days

Today, I am 4 weeks pregnant. I found out at 3 weeks, 3 days or 12 dpo (days post ovulation). My beta at 13dpo was 140. My first goal was to see the beta double in 48 hours. My beta at 15dpo was over 300! I am currently on 81 mg aspirin, 20 mg prednisone, 3 mg tacrolimus, 200mg progesterone twice a day, and 25 mg PTU (unrelated to CHI, but will list it for reference nonetheless). As far as vitamins, I’m taking a prenatal, an extra folate, calcium, vitamin D, B6, B12, and omega-3.

This Week in Review

Monday when I got my BFP, I called my RE’s office but because of the pandemic their offices are still partially closed. I left a message and told myself I could wait until they called back. Well, a few hours later, I decided I should go ahead and call my MFM’s office because they would be open. I spoke with a nurse who said she would follow up to see what MFM wanted to do about the medications and call me back. Then the RE’s office called and said the RE had spoken with the MFM, and they had decided that I didn’t need to start my meds until I had a confirmed viable pregnancy at 6 weeks. The nurse sent me a lab order for the beta in the meantime. By this time it was the end of the day, so I wasn’t able to go into get my labs until Tuesday. I also had notified my endocrinologist (for my hyperthyroidism) about my pregnancy, and he ordered a thyroid lab. My MFM then gave me a call himself and took the time to explain the medications. He also said that although he felt I would be fine waiting until 6 weeks to start the meds, if it made me feel more comfortable about everything, he would put in the prescriptions that day. I, of course, said I’ll take them now please! Prescriptions for tacrolimus 6mg per day and prednisone 40mg per day were put in and he told me to start out at half right now, but I would increase the dose as time went. I also got a prescription for 200mg progesterone twice a day. Because of the bleeding risk, I won’t start heparin until the viable pregnancy is confirmed at the 6 week scan.

Tuesday I had my beta done and got the results back of 140. My thyroid function also came back as drifting toward high again, so I was instructed to start my PTU half a pill a day again until my check up with the endo in June. My husband went to the pharmacy and picked up my meds, but was informed that the pharmacy would not be fulfilling the tacrolimus prescription because my insurance had rejected it.

Wednesday I called the MFM’s office again, and they said that a prior authorization was needed and then they worked with a specialty pharmacy to get my prescription filled. However, the pharmacy had relayed the message that “there are manufacturing issues” with tacrolimus, so it was unclear about the availability. I immediately started to worry that this meant that they would be prioritizing who would be able to get the tacrolimus, and since I’m technically using it for an off label purpose, I would probably be the one to be blocked. I couldn’t wait to know the answer, so I called the pharmacy and was able to set it up to ship for delivery Friday. Thank goodness!

Thursday I had my second beta and the result was over 300, I believe the nurse said 330, but honestly, once she said 3 hundred, I was on a whole other level because doubling would be 280!

Friday my tacrolimus arrived, and I was able to take my first dose. Sigh of relief! I also emailed the doctor in London who established tacrolimus as a potential treatment for this condition, to gain some insight into monitoring the dosage. Currently my MFM only wants to do blood work to monitor the effects on my kidneys and liver, but not the levels of tacrolimus because “there isn’t an established therapeutic level to treat/prevent CHI.”

So, in the whirlwind of this week, I’ve checked off a few goals and will continue to look forward to one goal at a time. Next goal is to have a good beta next Thursday so that we can schedule the 6 week scan.

Sorry for the long post, I promise they won’t all be so long-winded, but a lot happened this week! If you are following because you are facing CHI, please feel free to reach out if you have any questions at all!

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