Immunologic Info and (last) Treatment

I had my last intralipid infusion last Thursday! This topic has been weighing heavily on my heart to share with you all.

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I feel that this is a common problem that is overlooked by a majority of RE’s who just don’t understand or know the latest research available. If you have unexplained infertility, endometriosis, history of chemical pregnancies or failed IUI/IVF cycles- please read these articles and advocate for yourselves. Ask your RE for immunologic testing or get a second opinion! The articles and webinar listed link to my RE’s page. I’m not saying to use my RE (although he IS amazing and I would totally recommend him) but he’s always available to do skype consultations no matter where you live. He’s one of the guys leading this amazing research and is very knowledgeable! It’s worth looking into!
Here’s a quick version of what his nurse said to me about NK cells when I found out they came back abnormal..
“Your Natural Killer cells did come back as abnormal. Allow me to explain what this means and what we are going to do to counteract these.
Natural Killer cells are a normal part of everyone’s immune system. They are what patrol our bodies trying to keep foreign things out of our bodies. Some people have Natural Killer cells that are a little more aggressive. In normal life, this is usually a good thing. Maybe they don’t get sick as often, or if a bad cold is going around it won’t hit them as hard. Natural Killers don’t realize there is a difference between embryos and germs though. They just see something is foreign and doesn’t belong and end up trying to keep the embryo from implanting inside the uterus. Dr. Sher has found that doing an Intralipids Infusion can help to calm these aggressive Natural Killer cells down to allow embryos a chance to implant inside the uterus. There would be an infusion prior to starting the monitoring process. After the embryo transfer if you are confirmed pregnant, there would be a second infusion done.
There are no side effects to the Intralipids Infusion as long as you are not allergic to egg or soy.”

Now go watch this webinar, read these articles and get informed!!!

Immunologic Causes of Infertility and IVF Failure Webinar

Autoimmune Implantation Dysfunction Article

IVIG & Intralipid Therapy in IVF: Interpreting Natural Killer Cell Activity for Diagnosis and Treatment Article

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5 weeks + 1 day

   I know it’s been a bit since I’ve posted so I thought I’d give an update. As I said before, my OHSS came back after I found out I was pregnant. I had been pretty uncomfortable and I felt that it was getting worse on Sunday. I called my OB and my RE’s offices on Monday to find out a if there’s anything I should be doing differently, anything I should be looking out for and when I should be concerned about my symptoms. I had been having some moderate discomfort and shortness of breath. I wasn’t able to eat or drink much because it felt like there was no room for it to go. My belly was huge and I had gained 10+ lbs. in a fairly short amount of time. After much back and forth between the physicians, it was decided that I should be admitted to the hospital overnight for observation and to have some tests run. (I thought this was unnecessary. I gave myself the better safe than sorry and at least I would get some answers pep talk.) I had a chest X-ray, labs and an ultrasound to measure the free fluid. **Of course this happens when W is in Finland again for work! He always misses the exciting stuff. Thank God my mom was here to drive me around, keep me company and take care of me!

   The OB on call came to talk to me the following morning and confirmed that I did have moderate OHSS with free fluid. Chest X-ray and labs looked good. She recommended bed rest as much as possible and to drown myself in Gatorade and that eventually it would self resolve and I would start peeing off the fluid. I had been having these awful cramps specifically in the middle of my upper quadrants and the US confirmed that I had some perihepatic ascites. Hopefully that was the culprit! Here’s a timeline of belly pictures..

This was during the beginning of my IVF cycle on meds…

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This was the day of my egg retrieval, swollen from all of the follicles that had grown!

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This was a couple of days after my retrieval when the OHSS started to kick in the first time!

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This was the day I decided to call the office and see how big I was supposed to let this belly get because that’s a whole lot of fluid!!

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This was taken during my night in the hospital. Ouch!

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   After coming home from the hospital on Tuesday, my mom stocked my fridge with Gatorade (Thanks, Mom!!!) and left me to rest. I have had two wonderful bed rest buddies. This is one of them. She’s my old gal, Gigi!

 

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   I had a follow up appointment with the nurse practitioner at my OB’s office on Thursday. She just happens to be my lovely cousin without whom I’d be a mess right now. She answers my crazy questions and calms my nerves! My belly had improved, and labs looked good! She ordered one more beta and it was right on track! First U/S and official OB appointment still set for April 2nd. 

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Okay, now to the fun stuff…..

Official Due Date: November 20, 2014

How far along: 5 weeks + 1 day

Total weight gain: SO funny! About 10lbs. of fluid, which I hope my body rids itself of before I really start gaining!

Maternity clothes: Thanks to the fluid, lots of non-maternity leggings and long shirts.

Sleep: Was cramping a lot last week in the middle of the night and waking up between 3-5am daily. Cramps are better, sleep is better between potty breaks but I’m still waking up early!

Best moment of this week: Seeing my beta hcG doing what it should!!

Miss anything: Exercising, lifting things, and most of all, hot bubble baths.

Food cravings: No crazy craving or aversions yet. My appetite is returning as my belly goes down.

Anything making you queasy or sick: Not consistently. I feel sick some mornings if I don’t eat something quickly enough.

Have you started to show yet: Just my 10lbs. of fluid!

Happy or moody most of the time: I feel happy! I’ve only had a few emotional moments and it was mostly around being scared about the hospital and not having my husband there.

Looking forward to: W coming home next week and our first US to see how many there are and a little heartbeat(s)!!!!

Baby on Board

We’re pregnant!!!!!! It’s still very, very early and there’s lots of milestones to meet but I feel like many of you were keeping track of dates and I couldn’t leave you hanging!

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I must admit I’m that girl who (this time only) ordered 25 tests online and started testing at 4dp5dt to make sure the trigger shot was out of my system. (If it was still there, it would have given a false positive as it’s the same hormone that your body makes during pregnancy.) When at 6dp5dt I still saw nothing, I started to get down even though that’s very early for a positive test sometimes. I had a second interview on Monday for a NICU position I had applied for after moving back so I gathered myself up and went. Before I was getting ready to leave I peeked at the test again and something looked different about it.. Not a faint line necessarily but something that made me go, “hmm..”. When I ordered the tests, it said on the website they could detect hcG amounts as low as 20. When I read the paperwork with the tests it said 50! I wasn’t very happy. I stopped after my interview (which went well) to buy some more sensitive tests and decided that I would test again the following morning.
Well, since I’m so incredibly patient..I was on the phone with my cousin who is a women’s health nurse practitioner and had to use the restroom. Since we aren’t very close and and are really shy (KIDDING) I of course do the yucky thing and go while I’m on the phone with her. I mean, the box of tests is just sitting there. There’s three in there. “Just PEE on me already”, it was screaming. So not expecting much, I pee on it as it demands. As soon as it started reading across the screen, one line.. two lines! Cue the hysterics! She didn’t know I had taken it and kept saying, “What’s wrong?? What’s going on?”. I was finally able to let out in some form of English, “I’m pregnant!”. We cried, we freaked out, we laughed. It was then that I decided I couldn’t just tell my husband over the phone..
W had been in Finland and wasn’t going to be back for another 3 days!! Could I wait that long?! I felt that since everything we’d done so far had been so planned, payed for, and scientific that I wanted to be in control of something! I decided that I would get a “Baby on Board” sign and put it in the back window of my car so that he’d see it putting his bags in when I picked him up from the airport. I thought it would be fun to have a photographer capture the moment but since it was very last minute, I wasn’t able to find one. It just so happens that my sister is a photographer! Of course, that meant I had to tell her early.
I gave her a belated Happy Birthday Aunt card and signed it from us and Baby(ies) Oliver! My mom and grandma were also there when I gave it to her. Everyone was thrilled and we planned our airport adventure.
It was difficult to pretend like I didn’t know anything when I talked to W in those few days. I told him that I had stopped testing because I wanted him to be here regardless of what the outcome was for support and he said he understood but also said, “I just want to know now!!”.
We arrived to the airport a few minutes early and got the sign in place and my sister got ready to hide while I went inside to get him. I didn’t make it to the gate so I met him at the baggage claim. I had said that my dad wanted us to go to dinner to give him a reason for changing into fresh clothes after 20 hours of flying. He was a bit short with me and while he was happy to see me, he just seemed strange. I chalked it up to being exhausted from traveling. We talked about my first appointment and that I didn’t have results yet because they wouldn’t let us know until after they saw a double in my numbers on Friday. He accepted my explanation but said he couldn’t believe I hadn’t tested and again, that he was anxious to know.
We walked towards the car and I text my sister to give her a heads up. As we were walking and nearing the car W said, “I thought for sure you’d show up with a tee shirt or a Baby on Board Sign”. Oh man! So I said “Hmm.. Sorry”, and when we reached the car in a few feet I said “like that one??”! It took him a few seconds to process what was going on. He said, “Are you serious? You know? Since when?” I told him I had known since Monday. He was giving me a hard time for holding out on him but I think he definitely appreciated the moment and the thought that went into it. It was beautiful!
When we got in the car, he admitted that’s why he had been so aloof in the airport. He had imagined finding out when he got back and when I collected him and didn’t say much other than the usual greetings, he was disappointed. Poor guy!

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We did end up meeting my dad and his wife for dinner. I had purchased a tumbler cup that had lots of words including “World’s Best Grandpa” on it. I had filled it with ice water and brought it in with us. A bit after ordering I said, “Hey dad, do you like my new cup? I just got it.” He put his glasses on and was reading all the words around it such as, “awesome, cool, wonderful”.. I pointed to the bold words about grandpa and then it clicked! What a great moment! Tears and hugs all around!
Now for the scientific stuff.. My first beta hcG on Wednesday was 160. My beta hcG today was 259. That’s a doubling time of about 60 hours. At this stage they want to see it double every 31-72 hours. So for now, we are on track! As I said, there’s still things that could go wrong and there’s still milestones we need to meet. I have my first OB appointment on 4/2 where we should be able to see how many there are and heartbeats!
I feel like I know the exact moment that the hcG really started surging through my body. If you’ll recall, I had a bit of OHSS (big bloated belly picture) after my retrieval. They said if I was pregnant, it would most likely come back when my body started producing hcG. Sunday night, I had this awful cramp that woke me up. I ended up going back to sleep but when I woke up, the bloat that had subsided was back with a vengeance! That was another thing that peaked my curiosity about the sensitivity of the tests!
So far, the worst thing is the cramping and fullness/bloating. I can hardly fit into anything that’s not stretchy. I look like I’m about 20ish weeks pregnant and have gained about 7-8 lbs. of fluid! It’s difficult to sleep at night and I’ve been averaging about 3-4 hours which doesn’t help with the exhaustion! I’ve only felt nauseous once and it was because of an empty stomach. My hips are sore from my nightly progesterone injections but I keep telling myself that it’s all worth it!
Oh yeah- I got the job! I’ll be working part time nights in the Neonatal ICU at a beautiful facility right by my house. It will be great to get back to my babies. My brain has been turning to mush! I should start the first part of April.

Thank you so much to everyone who has been checking in on me. You mean more than you will ever know- all of you! Thank you in advance for the continued prayers. We are so fortunate to have such a great support system of family, friends and all of you lovely ladies in this online community!

…yeah right!

...yeah right!

One of my wonderful friends posted this on FB today and I thought it was appropriate for all of us IVF-ers! It’s so much easier said than done, trying to match symptom for symptom! 4dp5dt and it is dragggggginnnnggg! Starting to get nervous. Giving myself pep talks multiple times a day!

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We decided to head home early as travel was permitted by the clinic on the second day after the transfer. W has to head to Finland for work on Saturday so we decided it would be nice to spend a couple of days in our own house before he left.

I’m still on dexamethasone, folic acid, injectable progesterone and estradiol/progesterone suppositories. W has been awesome at giving my my nightly progesterone shot and I just realized on our way home that I wouldn’t have him around to give them to be in a few days! I’ve done all of my own shots, but never an intramuscular injection. I finally did it tonight by myself! I figured I’d better try a couple with him around in case I needed help. It was not nearly as bad as I was anticipating and now I feel good about doing them solo.

I got settled in for the night and was so disappointed that in the rush of the day, I hadn’t even thought about not hearing from the clinic about the final count of our frozen embryos! When we went in for the transfer we were told that there were 3 for sure frozen, 3 more that they anticipated freezing and a couple more that they were watching. I was doing my nightly routine and checking email and there was an email from our awesome clinical coordinator with an update! We officially have SEVEN – GRADE 2 embryos frozen for future use! I’m ecstatic about that! It’s more than I was hoping for! We started off with 12 eggs collected, all of which were mature. They say to only expect about 50% to make it to blastocyst stage for transfer or freezing so 7 frozen plus the 2 transferred were 75%! And all grade 2 with minimal fragmentation on top of that? I’ll take it!!

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I’m now 2dp5dt (IVF lingo that means 2 days past a 5 day transfer). I had a tiny bit of bleeding on the day of the transfer which the nurse said was completely normal and was most likely from cervical irritation from the actually transfer but nothing since. I’ve felt good other than the usual progesterone side effects. I’m tired and I try to tell W it’s from the progesterone but I feel like he thinks I’m milking it! I’ve had some very minor cramping off and on but nothing much to report! ….And now we wait…

One little, two little embryos..

Today was transfer day! I didn’t feel nervous (or maybe I was telling myself that I wasn’t) but who are we kidding?

We arrived at the clinic with not much time to spare and they handed me a tiny nondescript manila envelope containing a pill and said, “take this”. We were escorted back to a room where I was instructed to assume the position. The nurse came in to tell us that we had 2 beautiful grade 2 embryos to transfer today and that we would discuss the others after the procedure. We were given a picture to keep of the two we were transferring.

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My bladder wasn’t quite full enough and they ended up having to cath me and insert what to me felt like approximately 5.5 gallons of fluid. That was seriously one of the worst feelings I’ve felt in my life! It was incredibly uncomfortable and made me eyes tear up! They inserted the catheter into my uterus and called for the embryologist to transfer the embryos. I wasn’t able to see the screen but W said it was pretty awesome to watch what was going on. The transfer went very well and the doctor had mercy on me and chose to cath me again to remove the fluid from my bladder. Thankfully, I was able to stay horizontal for the full 30 minutes without having to get up to go to the bathroom!

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We went over our calendars, lab draws and remaining embryos. Here’s the breakdown of what we have left:
⭐️THREE (grade 2) embryos that are frozen
⭐️THREE additional (grade 2) embryos that are expected to make it to freeze
⭐️A couple of embryos that they will continue to watch to see if they will make it to freeze.

We will get the final frozen count on Thursday.

We were given a 50-60% chance of pregnancy with a 25% chance of twins based on my age, etc. We should know in a couple of weeks if it worked and if so, a couple weeks after that how many. I’ve been instructed to be a couch potato today and then I’m allowed to resume mild activity tomorrow.

Thank you everyone for your well wishes, thoughts and prayers. You all mean a great deal!

Embryo Development Day 3

I had a “relaxing” day yesterday with my gatorade while W went hiking with some friends. I must admit, I was a bit jealous to not be able to go. The highlight of my afternoon was going to the grocery store to pick out some new gatorade flavors. My go to drink when I wasn’t feeling well in the past was gatorade but I feel like our relationship is changing!

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I also snuck out of the house for a couple hours last night with W and friends again. We went to dinner at Wicked Spoon at The Cosmopolitan. I tried to eat mostly sodium filled, high protein food (to help my OHSS) but I may or may not have had a few desserts! After that we went to see Penn and Teller at the Rio. Teller was nice enough to take a selfie of all of us with my phone.

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I got the update from the clinic about our embryos! Good news again! All 12 are STILL growing! Here’s the daily dirt on what’s to be expected..

“Within 72 hours of fertilization (day 3) it ideally should be 6-9 cells and by day 5 or 6 it should have reached the 100-cell+ stage with a fluid filled cavity inside (expanded blastocyst). Embryos that fail to reach 6-9 cells within 72 hours of fertilization are developing too slow or too fast and more often than not are aneuploid and “incompetent.” Also, cleaved embryos that contain significant cell fragments (fragmented embryos) are also more likely to be aneuploid.

Our research has demonstrated that failure of an embryo to reach the expanded blastocyst stage within 5 to 6 days of fertilization is almost always associated with aneuploidy. As stated such aneuploid embryos are thus “incompetent”.

On average, a 6-9 cell day-3 embryos transferred to the uterus would have about a 20-25% chance of propagating a live birth. If left in culture for 2-3 days longer, many (but not all) such aneuploid embryos will stop growing (arrest) and be culled out in the process. Those that make it to blastocysts are then more likely (35-40%) to develop into babies. Those that fail to survive to the blastocyst stage are “incompetent” and even if they had been transferred to the uterus earlier on, would almost always have failed to implant.”

Here’s the break down of what we have on Day 3 (all with minimal fragmentation):

  • 3- 7 cells
  • 7- 8 cells
  • 2- 10 cells

The clinic nurse said in a normal cycle, 50% of these embryos won’t make it to blastocyst stage (the stage where they would transfer). She said to not be alarmed if the numbers start dropping. I’m thankful to still have 12 so hopefully our end number will allow for freezing some. The tentative plan is to transfer on Tuesday if my OHSS is deemed well enough to the RE. We will (God willing) transfer 2 embryos and freeze the rest for future use. Image

Embryo Development Day 1 & 2

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Good news! We got a call yesterday that all 12 of our eggs had fertilized using ICSI! Today (Saturday) will be an observation day and we will get another call tomorrow to see how many are still growing. W thinks it’s slightly comical that there were a dozen collected and fertilized. He’s been calling me his hen! Here’s some information on what’s been taking place..

Day 1: The eggs are assessed for evidence of fertilization. Normal fertilization is evidenced by the presence of two pronuclei, one from the egg and one from the sperm. If there are too few or too many pronuclei, the embryo is considered abnormally fertilized. All normally fertilized embryos are put into a culture media that mimics the tubal fluid found in fallopian tubes and placed in an incubator.”

Day 2: The embryos are assessed for cell division. Most embryos develop 2-4 cells by day 2. Embryos are graded based on an embryologic grading system that incorporates number of cells, cell regularity and degree of fragmentation.”

Speaking of growing.. That’s what my poor belly has been doing since the retrieval. I showed a picture to a fellow NICU nurse friend of mine and she agreed that I could easily pass for 23 weeks pregnant. I spoke with the nurse at the clinic and she said mild OHSS was common with girls like me who have PCOS and produced a lot of follicles. She said as long as it doesn’t get markedly worse and as long as I’m not in significant pain that the best thing to do is drink fluids with electrolytes and hope for it to resolve soon. I can’t believe I’m posting this awful belly but I know that I appreciate being able to google other’s blogs and see real pictures of what to possibly expect!

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Here’s a brief description of OHSS. “During IVF, the stimulation medications cause the body to create and grow many follicles (versus the one a month a woman’s body produces without medical intervention). As these ovarian follicles grow, they release a number of different substances, the most important of which is estrogen. This estrogen allows the lining of the uterus to thicken so that the embryo can implant and snuggle in. Once the follicles have reached maturity, an IVF patient takes a “trigger” shot of HCG to cause ovulation. Harvesting of the follicles for eggs is now done and the follicles are aspirated with a needle, releasing all of the fluid. After this, huge amounts of estrogen-rich fluid pour out of the swollen and enlarged ovaries and into the abdominal cavity. Many women will then experience some mild OHSS symptoms (bloating, some abdominal discomfort, etc.) after retrieval. After retrieval, the follicles refill with fluid and are called corpus luteum, because they contain large stores of cholesterol that are used to produce the steroid hormones estrogen and progesterone. In addition, the follicles start to produce a number of other growth factors and chemicals like vascular endothelial growth factor (VEGF) and kallikrein-kinin, which then coat the lining of the abdominal cavity and cause it to become leaky. This is called ascitis. Fluid literally pours out of bloodstream into the peritoneal (abdominal) cavity because of the leakiness of the lining. The ovaries balloon in size and the abdomen swells.”

BINGO! Apparently I win. Hoping this will all be worth it in the end! (We were able to sneak out for a bit with some friends to do some shopping, have lunch and watch the fountains at the Bellagio. Put $5 in a slot machine and won $40. Might have to go back tonight and see if we can find some more IVF reimbursement! -ha)

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*On a side note: I keep reading these posts about fellow women who are struggling with infertility resenting their friends and family who get pregnant or have kids. They say that these pregnant women are insensitive to our struggles and that they should somehow put a cap on their excitement or filter everything they say. While I understand how hard it is to feel as if life is passing you by and to watch these women take for granted something that doesn’t come easily to us, I can’t help but think that sometimes WE are the insensitive ones. Who says that we should get to celebrate our BFPs (pregnancy) and they should keep quiet as not to upset us? It’s not their fault that they didn’t go through the same struggles as we did. Every woman deserves to celebrate such a precious time in their lives any way they see fit. We should be supporting each other as women, fertile or infertile instead of debating who gets to celebrate and who is insensitive. Yes, they may not know all of the pain, hormonal rages, stress and heartache that we go through but that’s a badge that I will wear proudly. You don’t have to know about my struggles or tiptoe around them because I know that everything that I’ve gone through has only made me stronger and has shaped me into the woman that I am today. You can’t control other people’s actions, only how you respond!