Sunday, January 31, 2010

The Full Story

Earlier this fall I started thinking that I wasn't too happy with how my NAPRO doctor was responding to my miscarriages. He had done some tests and even found a couple of things (MTHFR heterozygous mutation [a blood-clotting disorder] and slightly elevated Natural Killer Cells). However, he thought both were minor issues and didn't need treatment – not even baby aspirin or extra folic acid which is pretty standard for a MTHFR diagnosis. I got to thinking, I have had three miscarriages and my sister has had two. Between the two of us, we have had five miscarriages and have never carried out of the first trimester. I felt strongly that there was something going on – this was not just random.


For a few months, on the Catholic Fertility Yahoo! Group there has been a lot of talk about Dr. Joanne Kwak-Kim, a reproductive immunologist in Chicago. I knew that she takes miscarriages seriously, that she takes insurance, and is pretty easy to get into, so we decided to give it a shot. I wanted to try to get in before the end of the year because I had already spent so much money in insurance, I knew it would be way cheaper to get all of her tests run in 2009 than it would be if I waited until 2010. I sent in all my paperwork and records in October. Not two hours after getting my positive pregnancy test, I got a call from her office wanting to set up my initial visit! They could get me in around mid-December. I let the receptionist know that I had just found out I was pregnant and that I wasn't sure if I should still plan to come now, or just wait and see what happened (I know her treatments are best started pre-conceptually). She said she would have a nurse give me a call back. The doctor went ahead and looked through my files that day and a nurse called me shortly afterwards. She said that from the information they had, she definitely felt I needed to be on some different medicine and that mid-December would be too late. Dr. Kwak said that if I could come out to Chicago on Monday or Tuesday, they would work me into their schedule (this was a Friday). So, I got on the phone with my husband and we decided to go for it. God was obviously opening some doors for us. I spent the rest of the day at work booking flights, hotel, car rental, and getting directions. We took off on Sunday night and were in her office first thing Monday morning.


I loved everyone on her staff! We were basically the first people there for the day and they brought me right in for an ultrasound. We were able to see the fetal sac and the yolk sac and we were only 5 weeks, 2 days. This was huge for us, as with our first and third pregnancies the yolk sac never developed. They were also able to tell me within 15 minutes of getting to the office that the blood flow to the baby was not good – the pressure within the vessels was too high. Next, I got my blood drawn – 21 vials! Then they let us leave for about an hour to get some breakfast because Dr. Kwak had a phone consult with another patient – I love that they didn't waste our time. When we got back, Dr. Kwak came in for an exam – she said, "I'll do a quick physical and then we'll go into the conference room to get some real work done." They brought my husband in and we went to the conference room, joined by two other doctors. Dr. Kwak went over my records and was able to tell me three things off the bat that could be causing my miscarriages. 1. The blood flow to the uterus; 2. The MTHFR; 3. The high NK cells. She explained how they all affected the baby and wrote the orders for my medications then and there. Before I left, the nurse taught me how to give myself injections of Lovenox, gave me a shot in the butt of progesterone, and left me with some samples of medicines.


Her protocol was as follows:

  1. Lovenox for the blood flow to the uterus and MTHFR
  2. Baby aspirin for the same
  3. Metanx (folic acid/B vitamin combo – the 2nd generation Folgard) for the MTHFR
  4. Prednisone for the NK cells
  5. Prometrium – for progesterone support and for NK cells
  6. Calcium and Vitamin D supplements (because Lovenox can cause bone loss)
  7. Weekly blood work
  8. Weekly ultrasounds in first trimester
  9. Exercise was limited to only low-impact aerobics, swimming, or yoga; 5-7 lb. hand weights; no ab work

We were thrilled to finally have some answers as to why we were losing our babies! Also, my progesterone level was at a 30, unsupplemented which was huge for me. When I did my hormone profile a year ago, my progesterone averaged a 5 post-peak!


We went home for Thanksgiving and my parents took us on a getaway weekend to the Georgia mountains. While there, I started spotting. I waited until the evening to tell my husband and we never told my parents. The following Tuesday, I was still spotting. We had an ultrasound and saw the baby and the heartbeat! I had a second episode of spotting about a week later. All ultrasounds were showing a healthy baby, measuring with to-the-day accuracy and a strong heartbeat. Thank God!


I had an OB appointment at Tepeyac at 8 weeks and Dr. B was on board and excited about my treatment plan. I think he thought it was overkill (I wondered as well, but found out at week 10 that it was not), but he said why not throw in the kitchen sink? He also said he was going to present me as a case study at their next doctor's meeting. I am legend now!


The Monday after Christmas I had a follow-up phone consult with Dr. Kwak to go over all my bloodwork results. I was at 10 weeks. Two new issues were found: Elevated Th1/Th2 cells, treated with Prednisone which I was already on. A homozygous mutation of PAI-1 (a blood-clotting disorder). Over the summer, my sister found out she had PAI-1 and I requested to get tested. The results came back negative as you may remember from this post. I thought it was weird that my sister would have it and I didn't, and always wondered if I should get retested. Well, thank goodness Dr. Kwak ran the test! I have since found out that there are two PAI-1 tests that can be run. One is for the polymorphism (genetic disorder) and the other is a PAI-level (I'm guessing this is testing your blood-clotting rate). I only had my levels tested this summer and those came back normal. I had no idea that the genetic test was never run – once again, thank God for Dr. Kwak! Treatment for PAI-1 is Lovenox which I was already on and possibly Metformin. Because my glucose and insulin levels were in range, she didn't think I needed to go on Metformin, but had my levels retested to make sure they were still normal. She also said to cut back on carbs and sugars and to focus on good carbs (whole grains). This is exactly what I was doing pre-conceptually, but due to the holidays and some queasiness, I had not kept up with the program. Testosterone was also found to be a little high, but the Prednisone works to counteract that, so all that was needed was a retest.


The blood flow to the baby had not improved, though hadn't gotten worse, which is good considering that the baby had grown from imperceptible on an ultrasound to over 4 cm. We upped my dose of Lovenox to 60 mg twice a day.


Next we found out some bad news. The blood lab had not sent my results to her office since the end of November! Originally I was asking for my results, but they were coming back good and I didn't want to obsess, so I stopped asking about them. I have never had a problem with a doctor getting my lab results, so I was quite surprised. One of the nurses spent the entire time I was on the phone with Dr. Kwak calling the lab to get my results and during that time they only found the most recent lab (which was obviously most important). The results were not good. In the past month, my progesterone had dropped from 58 (excellent) to 14 (horrible). My estrogen had dropped from 480 (perfect) to 130 (bad). She ordered two forms of estrogen for me, had me up my Prometrium and add progesterone injections. It seemed like overkill with two forms of each hormone, but I knew my hormones would be tested a week later and my meds would be changed up. The next day, like clockwork, I started spotting – the first I had seen in weeks. We were able to get an ultrasound for that Thursday (New Year's Eve) and prayed that it would turn out okay, otherwise we were going to have a horrible start to the new year. Luckily everything was great – I didn't even realize just how nervous I was until after we saw the baby and heartbeat on the ultrasound. It took a while for the butterflies to go away.


We retested my hormones the next week, the lab actually sent the results on time, and everything had much improved. I was able to halve both progesterone supplements and she wanted me to stay on the same protocol for estrogen. An ultrasound showed that the blood flow to the baby had improved as well with the increased dosage of Lovenox. I am now starting to wean off of the estrogen, Prednisone, and progesterone. Hopefully I will be able to come off of all of them at some point this trimester.


In other exciting news, my sister is also pregnant and is due one month ahead of me (I'm due July 25). Being my older sister, I am glad that she is able to take her rightful place in the family as the first to have a baby, although I am not letting her have too much time in the spotlight!


For those of you who have read this far, I am guessing you wouldn't mind seeing a couple ultrasound pictures, so here is my two favorites from the past few months. These are both from 11 weeks. We are so lucky to have picture of our baby's development week by week, and now bi-weekly.





13 comments:

  1. What a miracle! God certainly made everything fall into place for you- wow, I'm amazed! I'm just so happy you found a doctor who took the time to really work with you and all the timing worked out. Your baby is beautiful! God is so good! I'm so happy for your sister too- congratulations to you both! Please keep us all updated! :)

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  2. LOVE seeing the baby pictures!!

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  3. How wonderful! Its amazing that you have been able to share your story. Right in your words, are the answers to so many questions other women are facing! Thank you for being brave and sharing.

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  4. So happy for you!! God bless & give you a safe pregnancy and healthy baby!

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  5. Oh my goodness! I am so happy for you! What an amazing sequence of events. And I don't blame you a bit for not announcing sooner...I'd be a little gun-shy too.

    Congratulations!!!

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  6. Did you share your story on the Cathol.ic fertility board?? I don't remember reading it! This is fantastic, and also gets me hopeful since I'm a patient of Dr Kwak's (since August).

    Furthermore... you are due on my birthday!!! So you'd better deliver that day! :)

    Congrats, this is wonderful news. Be sure to continue to test your progesterone after coming off of the supplementation.

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  7. Congratulations! How wonderful all these doctors have been for working with you and helping to keep this little life growing inside of you! God is good!

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  8. This is fantastic news! Congratulations! When I finally got pregnant, my older sister was due (with her 3rd) 1 week before me. She delivered 1 month to the day before me. Being pregnant together was an incredible experience. I can't wait to hear more!

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  9. This is such an amazing story! Thank God for thorough doctors, and thanks to you for sharing all this information. Congratulations!

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  10. You've so been holding out on us :). But heaven knows I understand! Many heartfelt congratulations.

    ~the misfit (from the DC infertile Catholic gang)

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  11. This is such wonderful news!

    I can't thank you enough for sharing your story in such detail. I've had 3 m/c (my sister had many) and another blogger emailed me to come read and see if this Dr. and/or path might be something I want to look into. Thank you!

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  12. how wonderful for you!!!!!!! your story is so similiar to mine, and i only pray we can have such wonderful news like you. your u/s pics are amazing, i know you must feel unbelievable lifted and truly "tucked beneath his wing". congratulations and prayers for you and your blessed baby. thanks for truly going into detail in the story post. i will discuss this all with my RE in may. You do have heterozygous mutation of mthfr right? i have that form, and thought lovenox/prednisone was for the homogynous type only? maybe the RE will decide that route with me also...do you think my story is similiar to yours? i am trying to find good news out of a really bad situation! thanks for any help/info...

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