Plasmapheresis Done, IVIG Up Next

Today I had my last round of plasmapheresis. I, as well as the doctors, were disappointed with the results. After my first treatment my antibody titer went from 512 to 128 but they tested it again two days later on Wednesday and it was right back up to 512. Again, the doctors tested the antibody titer before treatment today and it was back up to 512. We all knew my body would be able to remake the antibodies that were removed, we just didn’t know how long it would take. I was hoping it would be more like a week or so, but apparently it took less than two days. The doctor was amazed by my immune system. I know how good my immune system is and it terrifies me since that is exactly what killed Lucy. Along with some of the doctors, I wonder if my immune system is so strong because I grew up in Africa and was exposed to different types of diseases and viruses. My sister said when we first found out that I had developed anti-kell antibodies and the baby might be attacked by my immune system, she felt an overwhelming sense of fear. She and I both have notoriously strong immune systems. Once, when she was on a teen mission trip to Ethiopia she noticed that all of the other people on her team were experiencing terrible diarrhea and vomiting after drinking the water. She was the only one who didn’t get it. The leaders told everyone to stop drinking the water without purifying it first. Silly Kristin…she wanted to “lose some weight” so she purposefully drank the water unfiltered. She still never got sick and remained the only one on the team to not fall ill.

There are some good things from this week that I am trying to focus on, though. My titer never rose back up to it’s original 1,024 which is amazing to me. I don’t know why it dropped after years of being the same, but somehow it went down before I even started the treatments. Of course the baby is still in great danger with any titer over 8, so 512 is terrifying, but it’s a little less terrifying than 1,024. It is a step in the right direction. We also found out that our insurance has agreed to pay for the IVIG treatments which will probably equal about $100,000 or more depending on how long we need to do them. We are still working on getting them to pay for the plasmapheresis, which is more like $10,000. We are SO thankful the IVIG is covered since it is the most important treatment for the baby at this time.

The goal of doing the plasmapheresis was to try to lower my antibodies, which only worked for a day or two. The goal of the IVIG is to try to block the antibodies from working. I will have my first IVIG treatment on Monday and then have another treatment on Tuesday. After that, I will be given IVIG treatments weekly by a home care nurse. That’s right, she will come to my home and give me the treatments here. I am SO excited about this since I don’t have to find childcare for the boys or drive two hours for every treatment like I have been doing. IVIG often causes bad migraines and vomiting so I’m hoping I am one of the lucky ones who doesn’t have to deal with these side effects (or they’re at least mild enough so that I can still take care of the boys.)

As I move out of the first trimester soon, I transition into the most dangerous time of the pregnancy. Weeks 12-20 are the most dangerous since the antibodies can attack the baby but (s)he is still too tiny to be able to do much to help. It’s much harder to give a blood transfusion to a teeny tiny baby than a bigger one. Also, if the baby isn’t yet to the age of viability the doctors can’t deliver if something goes wrong. If Lucy had been, say, 30 weeks instead of 19 weeks when she was so anemic they could have just delivered her and saved her from the antibodies. But she wasn’t far enough along so we just watched her heart stop beating, completely helpless. This baby is almost on the same timeline as Lucy. She was due in July and this baby is due August 2nd. This means this baby’s “danger zone” is right around the time of year that Lucy died. Her second heaven birthday is on February 8th so it is a sad and stressful time for us.

Please pray for our precious baby as (s)he tries to survive the coming two months. Please pray that the baby starts kicking early like his/her siblings and that (s)he kicks a lot to reassure me. That would be such a blessing to me. I started feeling Lucy kick at 14 weeks like her brothers, but the kicking slowly tapered off as she became anemic and moved less and less. This seems like a small request, but it would mean SO much to me to feel regular kicks from this little baby. Also, please pray for us on Monday and Tuesday. The IVIG treatments will be done on the labor and delivery floor of UAB hospital- the same place where we watched Lucy die and then had to go through the labor and delivery process. We have not been back there since, almost two years ago. I suffer from PTSD, mostly from watching her heart stop and the labor and delivery experience, so I am already feeling extremely anxious about going back there next week.

Thank you all for reading my updates even though they are mostly boring medical stuff these days, and thank you for praying for us. Your hope for our baby keeps us afloat when we barely feel strong enough to keep hoping ourselves.

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5 thoughts on “Plasmapheresis Done, IVIG Up Next

  1. So many thoughts and prayers for all of you through such a hard time. Having a due date near the due date of your angel is so triggering. It had been the same for us. It made it so hard in our “danger zone” when the dates lined up so closely. Thinking of you and hoping baby is strong and kicks early and often. ❤

  2. Thank you for sharing your story with us. I am so sorry for all your loss and struggles, but at the same time I am learning so much about journeys outside of my own. Best wishes as you go forward with your treatments. I look forward to reading future posts.

  3. Your posts are never boring!!! I really appreciate all the medical information. It lets me know how to pray more specifically.

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