16

Letter from Dr. Kwak-Kim

Dr. Kwak-Kim was very fast in typing up the letter explaining my diagnoses and need for treatment and monitoring. She emailed it to me early yesterday afternoon and already faxed it to my OB’s office. I knew a couple of these complications/risks, but not all. It definitely makes sense why we have to treat this situation so carefully and seriously. I am not taking any chances, and I don’t want my doctors to either.

And again, I’m fine with waiting longer in between ultrasounds if necessary. I just want to make sure spot and I are receiving the best care. Ultimately, it’s up to my doctors to determine what I need, based on my specific case (now that we have all the information). I trust Dr. Kwak-Kim completely and will follow all of her orders. She was the only doctor who ever took the time to find out what was wrong with me and how to fix it. Only 6-7 months after starting her treatment, I finally got my sticky BFP.

I’m sure everything will be fine. I’m so thankful for how well everything is going. It’s better to be safe than sorry though. This baby means the world to me, and I will fight and do whatever is needed to keep myself and spot healthy. I don’t care what local doctor I see, as long as they take things seriously. I’m looking at high risk docs/MFM and will ask for a referral if necessary. I wouldn’t be surprised if my OB says I need a high risk doctor anyway, after reading the letter. I’m surprised I wasn’t already referred, but there was a communication gap – since Dr. KK is out of state. Just a little harder & more confusing to coordinate care. We are working on it though.

January 29, 2013

RE:  Lisa Bailey

DOB: 10/5/82

Dear Dr. Rouse:

Lisa Bailey is a patient at the Reproductive Medicine Clinic at Rosalind Franklin Health System. She is being treated for immunologic and hematological disorders affecting her health and unborn child.  Mrs. Bailey had been diagnosed with the following disorders which increase her risk of having complications during her pregnancy.  We recommend short term follow up monitoring through ultrasound technology to ensure the well being of the pregnancy and Mrs. Bailey’s health.

Mrs. Bailey is being treated for the following disorders.  These disorders increase her risk of intrauterine growth retardation (IUGR), intrauterine fetal death (IUFD), preterm labor and delivery, preeclampsia, and maternal stroke. 

NK related (DX: 288.8 other specified disease of the white blood cells)

Mrs. Bailey has been diagnosed with increased Natural Killer cells.  Down regulation of cells is necessary to achieve a successful pregnancy outcome without preterm labor and delivery, preeclampsia and intrauterine growth restriction. 

APA (DX: 279.4 autoimmune disease, not elsewhere classified)

Mrs. Bailey demonstrates presence of antiphospholipid antibodies.  This condition results in recurrent pregnancy losses, intrauterine growth retardation (IUGR), intrauterine fetal death (IUFD) and occasional maternal complications during pregnancy such as thrombosis, stroke and transient ischemic episodes. 

TH1/TH2 Cytokine Ratio / TNF (279.10 Immunodeficiency with predominant tcell defect, unspecified)

T lymphocytes were investigated based on their cytokine producing capabilities.  Mrs. Bailey has increased T Helper 1 to T Helper 2 ratio indicating an inflammatory immune response.

T Helper 1/T Helper 2 cytokine 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 and IFN), which are cytotoxic and pro-inflammatory; as against the TH-2 cells (represented by secreting IL-10) which are important pregnancy.

Tumor Necrosis Factor (TNF):  TNF is a T-Helper 1 cytokine produced by activated macrophages, T cells and other cells and has many biological activities on the immune and other systems.  TNF is considered a major inflammatory mediator.

For these reasons I recommended treatment of the disorders as well as close surveillance through ultrasound technology.  Frequent monitoring (as frequently as weekly) is medically necessary to detect detrimental changes requiring emergent treatment changes.

I hope this will answer any questions you may have regarding her care.

Sincerely,

JOANNE Y.H. KWAK-KIM, M.D.

Director, Rosalind Franklin University Center for Women’s Health

Professor Obstetrics and Gynecology

Professor Microbiology and Immunology

Rosalind Franklin University of Medicine and Science

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45

Spot is still doing well! Not too happy with OB’s office though..

Yesterday I went for my weekly ultrasound, labs, and first visit with the nurse practitioner. I was 10 weeks, 5 days. I got my ultrasound right at the beginning of the appointment – yay! Spot is still doing very well! He/She is measuring a day ahead (10w6d) and has a nice strong heartbeat of 170bpm! They had a student doing the ultrasound, so I couldn’t see much. She didn’t really know what she was doing, but that’s okay. The regular ultrasound tech hopped on for about 60 seconds, got measurements, looked at the heartbeat, and printed a picture for us. I would have liked to see spot for a little bit longer, but that’s alright. As long as he/she is still doing well, that’s all that matters!

Aww, I love my little bambino xoxo You can see the face and mouth pretty well. So neat.

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The ultrasound tech then said I didn’t need weekly ultrasounds. That we would just listen for the heartbeat via doppler at my next visit and not have another scan until the anatomy scan at 20 weeks. I tried to explain about my other doctor (Dr. Kwak-Kim) and that she would like weekly ultrasounds. The tech was asking why – she said “What, just because you’re on Lovenox??” And I said, “Well, yes – that, and my history”. She just gave me a strange look and seemed annoyed or something. Sigh.

Then I met the nurse practitioner. She did a pap (ugh, but okay). She quickly ran through some do’s and don’ts of pregnancy and gave me a packet of information about pregnancy and the hospital I would be delivering at. This pissed me off – she was looking through my chart and said, “Wow, 11 pregnancies? There must have been twins in there somewhere, right!” She laughed. Sigh again. “No, I’ve never had a baby.” 😦 There’s recurrent pregnancy loss all over my chart! Sheesh! She then gave me the same speech about not doing weekly ultrasounds. I tried to explain to her what was going on, as well. (Shouldn’t this be in my chart already, or something? I just saw the doctor on Thursday). She seemed baffled as to why I needed so much monitoring, but she said we can check with my OB and try to do what my OB and other doctor want done. We talked about scheduling my NT scan between 11-14 weeks but didn’t set it up yet. I hope we will at my next appointment.

Finally, I got my labs done (labs from Dr. Kwak-Kim and some are not typical). The lab tech was throwing a fit about some of my labs because she didn’t know what tubes to use. I’m sorry I’m so complicated people! I’m not trying to be! I’m just trying to do what Dr. Kwak-Kim says. When I went to leave and schedule my next appointment, the front desk lady was giving me a hard time, as well. So, I felt kind of like an inconvenience to everyone there the whole appointment. I understand where they are coming from, but I’m doing my best to make this easy on everyone and still get done with what I need to do. I’ve got Dr. Kwak-Kim’s nurse emailing me every week asking for stuff and asking why they aren’t getting the reports they need. It’s kind of stressing me out. I just emailed Dr. Kwak-Kim’s nurse this morning and asked them to please write an explanation as to why I need to have these things done and fax it to my OB’s office.

I’m hoping things will smooth out soon. I’m so thankful, don’t get me wrong. I’m thankful for my doctors, the ability to be monitored, the treatment options, and of course my sweet miracle, spot. I still consider it a good appointment because my baby is doing so wonderfully!! I still can’t believe this is happening some days!

I wanted to share a couple of pictures from this past weekend. I was 10 weeks, 3 days and wearing maternity clothes for the first time EVER. 🙂 My regular clothes still fit, but OMG the maternity pants are SO comfy! These clothes seem to make me look more pregnant than I am, but I love that. I never thought I would see the day where I looked pregnant!

10weeks3days

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10

Quiz & info about my BFP cycle

This quiz is from twoweekwait.com. I thought this might be fun to post. 🙂 I don’t know if it would be helpful to anyone or not, but maybe! I will add some extra info about things that might have helped us get here.

Number of months you were TTC: 48 cycles actively.

Describe BD frequency during that month: Cycle days 6,8,10 – then everyday from cycle day 12-17 (ovulation was on day 16) – then 2 more times at cycle days 19 & 22.

What BD position did you use: I think we mostly did missionary this time. We usually throw in a couple doggy styles, too. I had the stomach flu, so I wasn’t feeling too adventurous. 😉

Did you use Preseed, aspirin, green tea, or other (describe): I won’t drink Green Tea because I have a Folate deficiency, and that tea can deplete it even more. We did actually use Pre-seed! We hadn’t used it in awhile, because it didn’t seem to help. Maybe it did help this time. I do take baby aspirin for my clotting disorder, MTHFR. I also take Fish Oil 1,200mg 2-3 day, extra B Vitamins and Folate, Vitamin D 2,00mg daily, and Prenatals. Prescription wise, I was on: Femara 5mg CD 3-7, Follistim/Gonal F CD 5-13 (I stimmed slower this time, which was good), Lovenox 40 units (1 injection) CD 6 – present, Metformin 1,000mg daily, hcg trigger, hcg booster, Progesterone 400mg every night starting at 2dpo, Prednisone 10mg daily starting at 2dpo.

If you know the night of conception, did you have the other big O?: No, I don’t think I did this time.

Did you lay down for a while, or prop your belly up? (describe): I’m pretty sure I went to sleep right after most of the time, so I was lying down all night.

Did you feel implantation (describe): I believe I did! I had a strong, hard cramp around 7dpo – but the cramps were even stronger around 9dpo. I had temp dips those 2 days, too.

Did you get any implanation bleeding (when?): Not this time.

How many dpo till you first tested: I had an hcg trigger, so I was testing really early to watch it fade out…but at 11dpo, it got noticeably darker!

How many dpo till you tested and got a BFP: 11dpo, but I didn’t quite believe it because of the hcg trigger. Got my beta of 60 at 12dpo though! That made it seem a little more believable!

What test gave you the first BFP: Pink Wondfos, and then an actually blazing line on FRER. And FRERs usually don’t get dark like that for me.

What was your first symptom: Constipation, gas, and cramps.

What has been your strangest symptom: I had a dream at 7dpo of being pregnant at Christmas time, and it came true!

On what dpo did you get your first symptom: I guess that would have been the weird, hard cramp at 7dpo.

Were your symptoms different from AF symptoms: Not really. I still felt like AF would come – especially with the cramps.

Did you experience cramping, bleeding etc after BFP (describe): Yes, cramping. Some of it was bad gas, but it freaked me out.

How did you tell DH: I just blurted it out and showed him my dark FRER. 🙂

What was DH’s reaction: He was cautiously excited – and shocked by the dark lines. He kept saying “Wow” or “Whoa”. After a little while, he became VERY excited.

How did you tell family/friends: We told them at Christmas, and showed them our first ultrasound picture. I had told my mom and dad already by phone.

What were their reactions: Excitement and tears! Lots of hugs and smiles! Probably shock, too!

Are you hoping for a DS or DD: Does not matter to me or Andy at all, as long as we have a healthy baby.

Some other things that I attribute to this working:

  • My Lap 1 year prior, in November 2011. They removed my Endo and Septum.
  • I continued to get 2nd opinions, 3rd, 4th, or more opinions/evaluations/testing/etc.
  • Weight loss of 26 lbs in the 6 months leading up to BFP cycle.
  • The addition of Metformin in May 2012 (so I was on that for about 7 months).
  • My immune meds & Dr. Kwak-Kim of course (started 7 months prior).
  • Femara & injectibles – with 6 mature  follicles that cycle. I think that’s how we caught a good egg!
  • The injectibles and trigger shot were donated to me, so I will be forever grateful for that.
  • Drinking a tablespoon of Apple Cider Vinegar everyday the cycle before my BFP cycle.
  • Doing Castor Oil packs with a heating pad several days a week the cycle prior.
  • Being on birth control pills for my cyst the cycle prior.
  • Also, I went gluten free in September 2012. It wasn’t quite working out, so I went about half and half in October 2012, then back to regular food mostly in November 2012 — December 9th, I got my BFP. I don’t know if that made any difference, but I thought I would include it.
  • I had been working on getting healthier for a couple years and taking all my supplements regularly for a long time. (I still forgot sometimes though & I definitely wasn’t healthy all the time – nobody’s perfect 🙂 ).
  • Prayer & luck! 🙂 And support from everyone!!

Dr. Kwak-Kim’s info: http://www.rosalindfranklin.edu/faculty/KwakKim_Joanne.aspx

37

My wiggle worm!!

Sorry it took me so long to update. It’s been a crazy (but awesome) day! It has been a stressful, busy week (especially with those labs and other stuff on Monday & Tuesday – if you read my last post)! But today made all my worries melt away!

I met my new OB today. She seems pretty nice. We didn’t spend much time together. I could tell she wasn’t crazy about my autoimmune issues and having to work with Dr. Kwak-Kim….but she is going to go along with everything! She will carry out my labs and ultrasounds as ordered! Thank goodness! She even offered to help manage my medications or give me refills, but Dr. Kwak-Kim has that covered for me. We only talked briefly about my history, and then she said I could do an ultrasound!! Yay!!

They have an ultrasound tech that takes care of that portion. I wasn’t sure what to expect with that, because I’ve only had doctors do it so far. I loved the experience though! She was quite thorough, pointed out lots of neat things, and took her time. She was very kind and funny. I enjoyed the tech much more than my doctors!

OH.MY.GOODNESS. The ultrasound was amazing!!! Our baby spot has grown SO MUCH in 2 weeks! I am so relieved – everything measured perfectly (even a day or 2 ahead)! The heartbeat is still going strong at 170 bpm! Spot was wiggling all around!!! He/She would kick and punch! I could have stared at that screen ALL day! It was so funny, spot would kick and then hold one leg up in the air! And then he/she would hold its arm up! Ninja baby! Spot kept putting its arm by his/her head. It was adorable. I’ve never seen anything that sweet or cute before. I am seriously IN LOVE! We saw facial features and everything! I have to say, we made the CUTEST baby! 😉 Andy was smiling SO big. He kept acting all giddy and saying spot was waving “hi” to us. Such a proud papa. All I’ve done is SMILE all afternoon 😀 😀 😀

I feel so much more relaxed, relieved, and excited!!! Those labs scared the crap out of me on Monday. I know we are not out of the woods yet, but there is a super strong-above normal-amazing-overachieving-beautiful-fighter in there!!!!!! Go spot!! Thank you, God!

Can you tell I’m a little bit excited? haha. I’m sorry for being so cheesy! 😉 Part of that is an explosion of relief and thankfulness, too. With every passing week, I just feel so blessed and amazed that we’ve been given this precious gift. I can’t even describe how much this means to me. And how much I want it for my sweet friends. xoxo. Thank you all for being a part of this.

Today, they did all my regular bloodwork you would have at your first OB visit, along with a urine culture. That was about it! I go back Monday for an appointment with the Nurse Practitioner and another ultrasound! I didn’t want to go back so soon, but that’s all they had next week. Then it will be weekly visits. I need to touch base with Dr. Kwak-Kim again about certain things – like how long will the ultrasounds be weekly, how much longer do I take progesterone (most people taper off around 12 weeks), will I take Lovenox for the entire pregnancy (I think I do), what about my Prednisone and Metformin, and other stuff. There’s so many things to think about, but thankfully I can email or call anytime.

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