Dr. Kwak Kim’s Assessment/Plan

Eeeeesh. There’s a lot — a lot to take in, a lot to process, a lot of information, a lot to think about. Too much!!!

We met with KK on July 7th at 9am and sat with her & the nurse for an hour; going over test results, next steps/options, etc. It was truly wonderful (and yet terrifying & intense) being able to sit one-on-one with her. The night before I hardly slept because I was so nervous!!

I know a lot of you have been patiently waiting for us to post about our results — but we had to really process them and think about our next step in this journey; we needed a few days. So for your patience – thank you! I texted/called some people and gave the “cliff notes” version the best I could, LOL. Hard to remember everything from an hour long meeting sometimes too!

A lot of what I’m about to type is “word for word” how KK has it to me in letter form; I do not have the numerical results yet – I’ve requested them, but we did go over them with KK in the meeting.

 

Here is what we have found out (don’t feel bad if you don’t know what half of this stuff is; I hardly do either):

  • APA (D68.312) — Antiphospholipid antibody test was borderline positive for IgM PA. Women with antiphospholipid antibody have increased risk to develop fetal death, stillbirth, recurrent pregnancy losses, severe pregnancy induced hypertension, intrauterine growth restriction and placental insufficiency even during the latter half of pregnancy
  • ANA — Antinuclear antibody and autoantibody to nuclear components (such as DNS, nucleotide and histones) were tested — ANA screen was negative, but will need a repeat screening with a positive pregnancy test
  • Antibodies to dsDNA; ssDNA; histone; and scl70 was negative
  • ATA — anti-thyroid antibody tests including anti-thyroglobulin antibodies and anti-peroxidase antibodies were negative; thyroid function testing was normal; TSH was 1.19
  • NK Assay (D72.9) — Natural killer cell levels and cytotoxicity have been reported to predict a pregnancy outcome. The NK assay demonstrates elevated CD56+ natural killer cell levels with relatively elevated NK killing capacity by flow cytometric analysis. The NK cell in vitro response in immunoglobulin G was not tested. B lymphocytes were measured by flow cytometic immunophenotype study. The patient has normal C19+ B cell levels with normal CD5+ B-1 cells. These CD5+B 1 cells are capable of producing autoantibodies that damage the placenta and decrease maternal to fetal blood flow. 
  • TH1/TH2 Cytokine (D83.1) — T lymphocytes were investigated based on their cytokine producing capabilities. The patient has increased T helper 1, inflammatory immune responses. T Helper 1/T Helper 2 cytokine producing cell ratio reflects the ratio between two opposing T Helper immune responses. An elevated ratio reflects the dominance of TH-1 cells (represented by secreting TNF-alpha and IFN-gamma), which are cytotoxic and pro-inflammatory; as against the TH-2 cells (represented by secreting IL-10) which are important for implantation and pregnancy.
  • Anti-inflammatory medication or immune modulators such as steroid (Prednisone) and/or intravenous immunoglobulin G infusion (IVIg) treatment is recommended.
  • Hormonal evaluation
    DHEAS level is within normal limits.
    DHEA level is within normal limits.
    Testosterone Free and Total levels are within normal limits.
    Fasting free insulin level was within normal limits.
  • Thrombophilia (E72.12 )Testing for inherited blood clotting tendencies or acquired thrombophilia was performed:
    • Leiden factor V gene was normal.
      Prothrombin gene was normal.
      Factor XIII gene was normal.
      Beta-fibrinogen gene was normal.
      HPA-1 gene was normal.
      PAI-1 gene was normal.
  • MTHFR (C677T) gene was homozygous mutated — anticoagulants, folic acid, vitamin B6 and B12 supplements are often considered for MTHFR gene mutation.
  • MTHFR (A1298C) gene was normal
  • Serum homocysteine level was elevated.
  • Plasminogen activator inhibitor 1 level was normal.
  • Protein C activity was normal.
  • Protein S activity was normal.
  • Other evaluations:
    Vitamin D, 25 hydroxyl level was decreased.
    MCV was 79.
    AMH – 3.54.
    Prolactin – WNL.

 

A lot to take in…right? Although a lot of my tests came back normal (thankfully), some of the really important tests came back elevated. Nothing we can’t fix, thankfully! Just a lot of medicine going into my body and right now, that’s hard to swallow with all we have been through and put in my body already.

This is what KK is recommending PRIOR to conception cycle (FET):

I was positive for the MTHFR gene. If you want to know what it is, please Google it. I don’t want to bore you with it here. To help my body, I will need to take the “designer drug” Metanx once/daily. But KK mentioned that this could be what is causing our implantation failure and repeated pregnancy loss. Hoping the Metanx will help! It isn’t covered under insurance, so I order it from Brand Direct Rx and it’s about $90 for a 3 month supply.

IMG_5157

KK is also recommending I stay on Metformin (for my PCOS) and Levothyroxine (for my thyroid). I need to start baby aspirin (81mg) daily and continue it throughout pregnancy. My Vitamin D was low (25) and they would like to see it between 30-100 (but ideally above 50) so I will start taking Vitamin D3 4000 units daily.

KK recommendations for treatment DURING conception cycle (FET):

  • Start Prednisone 10 mg. once daily 3 weeks prior to conception cycle. Increase Prednisone to 10 mg. twice daily at the time of a positive pregnancy test. Since Prednisone can induce gestational diabetes, fasting blood sugar should be monitored monthly at the referring physician’s office with test results forwarded to us. If pregnancy is not achieved after 3 conception cycles on Prednisone, discontinue the medication and contact the office for further recommendations.
  • Blood work 2 weeks after starting prednisone treatment for NK Assay, TH1/TH2 cytokine, Chemistry panel and TFT.
  • Start Lovenox 40 mg once daily, this must be injected subcutaneously and initiated cycle day 6 of the cycle of planned conception. It should be stopped if menses begins and pregnancy test is negative.
  • Increase Lovenox to 40 mg twice daily with a positive pregnancy test and continue throughout pregnancy until instructed to stop.
  • If attempting pregnancy through assisted reproductive techniques (IVF-ET, GIFT, ZIFT etc.) discontinue Lovenox injections 48 hours prior to egg retrieval or GIFT procedure and restart injections 12 hours after the embryo transfer procedure. If frozen embryo transfer, skip one dose of anticoagulant prior to transfer.
  • Uterine Biophysical Profile 5-7 days post initiation of Lovenox treatment.
  • Start Prometrium 200 mg. orally, twice daily the cycle of planned conception, 48 hours after ovulation or within 48 hours of embryo transfer and continue throughout pregnancy until instructed to stop. Discontinue the Prometrium if the pregnancy test is negative.
  • Start supplementary Calcium Caltrate 600 mg with vitamin D 200-400 IU twice daily when taking Lovenox and/or Prednisone therapy.
  • Start Intravenous Immune Globulin (IVIg) as follows, if testing post prednisone trail is elevated: Immunoglobulin G 400mg/Kg/day for one day between days 6-14 of conception cycle, at time of positive pregnancy test and repeated every 1 to 2 weeks as indicated by follow-up laboratory testing.
  • NK assay and cytokine ratio study should be done 5-7 days after each IVIg infusion.

 

KK recommendations for treatment/follow-up tests DURING PREGNANCY:

  • We recommend an APTT, Chemistry panel and a CBC with platelet count every month while on Lovenox.
  • We recommend TSH, Free T-4 and Free T-3 weekly during ART cycles.
  • Antiphospholipid antibody, anti-DNA/histone antibody, ANA, NK assay, PAI-1 and TH1/TH2 cytokine testing starting with positive pregnancy testing then as needed. Patients must schedule this test with our office.
  • A β-hCG (beta test) should be drawn every two days until a heartbeat is established per ultrasound.
  • Progesterone and Estradiol levels should be performed at the time of a positive pregnancy test and weekly during pregnancy until instructed to stop.
  • Blood pressure monitoring should be done monthly while patient is on prednisone.
  • A Triple Test (AFP, ß-hCG, unconjugated estriol) is recommended at approximately 16 weeks of gestation. The Triple Test screens for open neural tube defects and aids in assessing the risk for fetal chromosome abnormalities. Abnormal Triple Test results should be followed up by genetic counseling, high-resolution ultrasound evaluation and amniocentesis, if necessary.
  • Ultrasounds using gray-scale and Doppler techniques to assess the pregnancy development should be done every week beginning at 5-6 weeks of gestation through the first trimester and then monthly.
  • At 28-30 weeks, weekly Non Stress Tests and biophysical profile exams should be done.

 

Dr. KK and I discussed my ultrasound results as well. She didn’t seem overly concerned (thank God) about my fibroids because they aren’t big, but she is still suggested an HSG (painful) so she can check them out. That should be happening within the next few weeks. KK also recommends I see a thyroid specialist for my nodule that was detected on my ultrasound a few weeks ago and is 9mm. She had me take some blood when I was there because they found my blood was O- and my fertility clinic told me I was O+. She is also checking for serum iron, ferritin and TIBC. I go back in 4 weeks to go over these results. So far, we have spent $5000 with KK’s office and THANK GOD with insurance, our out of pocket was $33. We are very, VERY lucky to have the insurance coverage we do in Illinois.

kk

 

Overwhelmed yet? I’m getting anxious and high blood pressure just thinking about everything we need to do. We will be between my OB’s office, fertility clinic (AFCC), and Dr. Kwak Kim’s office…it will be a lot of traveling, a lot of testing, a lot of everything. What Matt & I need to decide, is are we ready for this intense of a protocol? Does it mean I could possibly carry our baby? Probably. But, having been struggling with infertility for 4 years and NUMEROUS {failed} IVF cycles & pregnancy losses – it has taken it’s toll on my body. Emotional, physically, mentally. But, we have held on this long…by the grace of God…

I wish I could tell you what our next step is. For now, we need to wait to see if IVIg will be covered under our insurance. It is $4,000 PER INFUSION that I will most likely need weekly (each infusion is about 3 hours long) – and if it isn’t covered, we will need to go a different route in our journey. We should know if it’s covered in about 3 weeks (I’m crossing my fingers for knowing sooner though)!!!!!

If you have been blessed and lucky enough to get pregnant and carry a baby to term (without the help of an intense protocol), please please please know how unbelievably lucky you are. And for those of you have had success with some extra treatment, GOD BLESS YOU! This shit ain’t for the weak. 

Thank you all for continuing to stand by our side during this journey. It’s been one long haul. Just like always, I don’t know what will come next, but I will definitely keep you all posted. Please keep us in your prayers that we are guided to know what is best for us and how to continue on this journey.

struggle

Love to you all, xoxo.

 

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2 Comments

  1. This is on incredible detailed journey, and you two are such loving and strong individual. Our prayers are with you on your continuing journey.

    Like

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