Catching Up: The Post- Depot Lupron FET

Hi!

Sorry it's been a while. Life has been absolutely nuts.

Here is how things went down for this long-awaited transfer, 7 months in the making.

Like planned, I had my last DL injection on 5/1. Per Dr. KKs protocol, I started 10mg Prednisone daily on 5/3 (21 days before CD1, or the first day of FET meds). So far, so good.

I was instructed to send in blood work two weeks later. This involved some pretty easy blood panels, like metabolic panels and CBC, but also the Kwak-Kim specific panels like NK cells and Cytokines. So, they needed to be mailed to the Rosalind Franklin University lab. To do this, I called local hospitals to see if they would do what's called a "courtesy draw" for me, where I provide the orders and the vials of blood (which KKs office mails me), they draw the blood and then they mail it for me. Dr KKs office also provides me with a FedEx clinical pak to package the vials and all I have to do is print an overnight shipping label. The phlebotomist then puts my pack o' blood with their FedEx pickup and it arrives in Chicago the next day.

My first results showed that my cytokines, which had been slightly elevated at 35 (normal is less than 30.6) were now very elevated at around 49. My NKs, which had been 4.5%, were now around 16% (anything above 15% is elevated). This led me to the great IVIG debate, which I will write about later.

From there, my Prednisone was increased to 15mg daily. Fine. Other than that, I just kept taking my Synthroid.

On 5/23, I had my baseline. They had a hard time "finding my lining" which I guess was to be expected coming off of the DL - after all, it was supposed to strip my lining and bring back a new, shinier version.

From there, I started my FET prep - this involved 2mg Estradiol three times daily, Augmentin to make sure I didn't have an infection, and Letrozole (Femara) once daily. So far, so good.

On 5/28 (CD 6 of meds), I began a daily lovenox injection (40mg) per Dr. KK for my poor uterine blood flow.

On 5/31, my husband surprised me with a puppy!! Chaos ensues :-)

On 6/2, I flew out to Chicago for a Friday 6/3 appointment at Dr. KKs office to check my uterine blood flow, run some blood levels and meet with Michell, the NP, regarding my plan going forward. I had been super anxious that whole week because I decided not to do IVIG despite having it covered by insurance, but was happy to find out that my uterine blood flow was awesome, my lining looked amazing (in fact, Michelle said it was rare that they see a lining looking this good!), and while my NKs had gone up slightly to 17%, my Cytokines were way down at around 36 I think. I was super excited!!! I was officially cleared to start Progesterone per my RE the next day.

My transfer was scheduled for the 6th day of Prednsone on Thursday 6/9. I scheduled pre/post acupuncture on transfer day and we headed to see Dr. Wang. Luckily, both embryos thawed and continued to expand! I didn't ask about grading because honestly, it wasn't going to matter. Good embryos don't always implant and crappy embryos sometimes make babies.

I was also instructed to stop lovenox 24 hours before transfer and begin it 12 hours after, and starte 200mg prometrium twice daily beginning 48 hours after transfer.

I had a really challenging TWW. My chemical in October had produced pinching sensations and cramps and slight nausea. This time, I didn't feel much of that - some twinges here and there, and some slight dizziness towards beta, but that was it. I always go beta or bust.

At 8dp5dt, I had my first beta. I was a nervous wreck all day and had them call my husband. After a delay in getting the beta (thanks, Quest), it came back at 78! I was elated....and also ridiculously anxious! Beta at 12dp5dt came back at 634 and today, at 14dp5dt came back at 1945! Holy crap!

My symptoms come and go...anything from twinges to cramping to back aching to very very slight nausea. I'm praying that on Monday, my next beta (per Dr KK, who wants betas up until you see a HB), keeps heading in the right direction!

One More Shot

     I was made aware of this project and felt that I needed to share it. An infertile couple made a documentary out of their infertility struggle and the 2 minute preview had me crying like, well, a baby.

     There is also an 8-minute preview, which I haven't viewed yet. Honestly, the footage I have seen is so raw and so true and I give them so much credit for having the guts to do this, and the desire to lend a voice to infertility.

Check out the trailer and donate so they can finish this puppy and unleash it on the world for fertiles and not-so-fertiles alike!

http://www.onemoreshotfilm.com/#trailer

Well, its been a while...Depot Lupron update...

     Hey there. I have been pretty MIA for the last couple of months. I would love to say that it's been because I've been traveling the world, or [insert super fun thing here], but I haven't. I have been working, going to my clinical rotations, teaching and doing homework for class. Boo. Oh yea, I've also been in a menopausal state, so that's been pretty awesome.

My life has basically been like this:

Depot Lupron hasn't been that bad for me...luckily. The list of side effects would make your head spin...blood in your stool, muscle pains, bone pain, etc. I've just been hot flashing like hell. I would say I get about 1 an hour...sometimes more or less...it's like a furnace is lit in my body. My legs and arms heat up at rapid speed...then it reaches my face and I start to sweat. It's sexy, trust me.

The hot flashes and I were getting along swell until they fucked with my sleep. I'm a great sleeper usually. Despite being anxious and anal retentive, I can fall asleep on a dime. Once the hot flashes came to town, it's been a never-ending cycle  of waking up screaming hot...remove blankets...wake up freezing...put blankets back on...wake up because I am screaming hot again, rinse, wash, repeat.

Needless to say, wearing layers has been my friend.

My brave husband administered my last injection. I'm not sure if I mentioned this before, but the needle is 2" long and made for someone that you would see on TLCs "My 600lb Life," So as of last weekend, there are no more Depot Lupron injections in my foreseeable future which is beyond exciting. I'm ready to have some estrogen back in my life!



The Stratification of IVF

     A couple of weeks ago I was perusing the interwebz for some infertility blogs and came across something that made me particularly stabby. A blogger (I can't remember who or else I would totally call her out) waxed poetic about how painful infertility has been for her. I totally empathized. In fact, I applauded her candor. She spoke about how she was jealous of pregnant friends, the pain of being the odd woman out, and the desperation she felt. She even went so far as to admit that she sometimes wished her friends would miscarry. It's a horrifying thought, but I applauded her bravery in stating that as I think many of us have had those same thoughts - not because we want anything bad to happen, but because misery loves company and sometimes it's satisfying to see someone else struggle so you aren't the only one. I gave her credit for her openness.

     She totally had me at 'hello.' until I saw that that bitch got knocked up her first fucking cycle of IVF. What the EVERLOVING FUCK does she know about pain?! Hopelessness? Desperation?

     In my opinion - not a damn thing.

     She posted that blog entry a couple of years ago, so I immediately clicked to her home page to get the latest updates. And guess what?! She was pregnant AGAIN on her second cycle. Oh bitch please.

     She knows nothing about the pain of infertility because she hasn't had a failed cycle. Hell, she hasn't had multiple failed cycles. Until you get to that point, you don't really know the horror of infertility. I'm not trying to be a bitch, and I'm certainly not trying to play the pain Olympics because that doesn't get anyone anywhere, but still.

     I've come to realize that for some, IVF is the Golden Ticket. It works all the time, 100% of the time. For others, IVF is the beginning of another long, painful road. And in that realization, I've begun to understand that the pain of infertility is doled out via a stratification system. We can all agree that it sucks badly to get to the point of needing IVF, but I hope we can also agree that it sucks even worse to need three, four, five or more cycles to have a baby compared to those who need one.

     What made this particular blogger worse, is that not only has she gotten knocked the fuck up twice in two transfers, but she has enough frozen embryos left over to start a small country. Fuck her. Try being on IVF #3 with fewer embryos to my name over three cycles than she got in her one damn shot.

     I'm not trying to minimize anyone's pain, I'm just trying to show that it is different, and likely more painful to be walking down my path. I've also come to realize that people who get pregnant on their first cycle of IVF tend to make me angrier than the "normies" who get pregnant the good ol' fashioned way. I think its because I feel so far removed from the normal procreators that their fertility doesn't offend me as much anymore (unless they make stupid comments about infertility, in which case they get a swift mental punch in the throat from me), yet those doing IVF are on a more even playing field than me and their success just highlights my failures even amongst the infertiles. And if you got pregnant by IUI? Good gracious you are pretty much fertile in my mind.

     I was so angry reading that post. I almost felt as if she had no right to feel what she was feeling because she ended up getting what she wanted, and getting it easily. Yet here I am, far deeper down the shit hole than she will ever be, and I haven't gotten my happy ending, and quite frankly, strongly doubt I ever will.

     I know I'm inappropriately minimizing the feelings she had that prompted her to write that blog entry, but for that I am not sorry. She got her happy ending. Now where is mine?

IVF #3: The Conclusion

    
     It was the best of time, it was the worst of times. Yes, my latest IVF cycle can be paralleled with the timeless classic, A Tale of Two Cities. Somehow, some way, this cycle managed to be my worst and best.

     To get straight to the good stuff, on Propofol Day egg retrieval day, we retrieved 12 eggs (!!!) but only fucking 5 were mature. I knew this. I had predicted this shit. My estrogen on the day of trigger was 3100+, which was by FAR my highest yet, but, having been around the block too many times, I knew better than to get excited. Highest highs followed by the lowest lows. That is all IVF is to me.

    Aside from the 5 mature, it looked as if a few more may mature in the lab. Thankfully, two more did. That brought our total to 7. Seven. This is the same number of eggs retrieved for IVF #1 and 2! My ovaries are pre-set apparently.

   The Holy Grail of this cycle came in the form of ICSI. This is the first time we did it and 6 of our 7 eggs fertilized! All 6 were still cookin' by day 3, albeit 4 were good and 2 were crapping out. We decided to press on to blast. That was terrifying! Three were blasts on day 5, and one was able to be frozen that day, with the other two frozen on day 6.

   Now that I am a few weeks out from stims, in my non-hormonal state, I'm thrilled with this cycle. Three blasts!! 3!!! We have never, ever had a blast before! Yet, in my drug-induced stupor I was a mess. It was so hard for me to reconcile that we had 12 eggs but not all 12 were mature. And I was frustrated with our low blast rate, even though it is an absolutely normal and expected number. I was ungrateful, and hormonal, and bitter. Truthfully, I was having a hard time with the reality that I won't ever make it rain eggs. I won't ever be the girl who gets 25 eggs and 19 embryos and winds up with 10 frosties. And I hate that. I was also feeling a ton of pressure to get many embryos because this cycle was to be followed with depot lupron for three months for my wonky endometrium, after which, I may not stim as well for a while.

   On day 6 after retrieval, I got an e-mail from Dr. Wang and he told me the second blast had been frozen but we still had to wait on the third, which, without some growth, wouldn't make the blast cut. I lost my shit. I wrote a long and angry e-mail (not anger directed at him) and he immediately called me. This is why I love him and he's the best ever. He spent thirty minutes talking me off the ledge and, telling me that my cycle went just as expected, explaining why he really felt that depot lupron is the right choice for me and giving me some hope. He made me feel so much better, and I was able to begin to realize how wonderful this cycle went.

    We all agreed not to test the embryos at this juncture. I'm praying that we have at least one baby in there. Please, oh please. It's time. It really is. I hope the HGH did it's job and we have some excellent quality pre-babies in there.

    As for now, I'm slowly settling into a menopausal state and trying to enjoy a well-deserved break from infertility treatments. Hopefully I can take some time to decompress, relax, focus on school and try to get back into shape for a short period of time before my body is (hopefully!) ruined by a baby.
   

My Depot Lupron Conundrum

     I don't want to do 3 months of Depot Lupron injections. There, I said it. I wish the decision was that simple. Today is the one day of the week that I decided to relax and do absolutely nothing. No homework, no housecleaning..I'm refusing to even walk the dog today. So, naturally, because I always need something to occupy my mind and elicit some sort of anxiety, I decided to focus on my upcoming Depot Lupron injections.

     To catch you up, Dr. Wang at SIRM CT recommended that I have the Endometrial Function Test (EFT) performed. You can read more about that here. My results showed that I had a high level of "Glandular Developmental Arrest," or GDA. Basically, this is corrected with three months of Depot Lupron injections.

    This is really fucking bad for several reasons. 1) Apparently Depot Lupron has been pulled from the market in several other countries because of the severity of its side effects. And we aren't talking just about the fact this it puts you into menopause. I mean things like cancer, chronic bone diseases, etc. Sounds fan-fucking-tastic. Of course there are many, many women who are just fine, but still. I don't exactly fall on the upside of odds as evidenced by my current bullshit situation.

    Second, we had our chemical in November. In December I didn't ovulate. In January I did the EFT. This month I cycled and for the next three months I'll be sticking myself with the menopause juice. In total, 6 months on the fucking bench. It's really horrifying to think that I will turn 33 in September. We started trying when I was 30. We still don't have a baby.

     This leads me to my major issue: I kind of want to try on our own for several months. Because of an underlying metabolic disorder, we sought treatment after 6 months of trying. That was fortuitous because I had Celiac and the septum. However, between all of the testing and cycling, we've only managed to try on our own for a total of 10 months. Only 1 month of which was after my big issues were solved. I kind of feel like we could have stuck it out longer. Plus, I am sick of feeling like I am spinning my wheels. The EFT and subsequent treatment is controversial at best. Am I doing the right thing by putting everything on hold for three months? Would I be doing the right thing by trying on our own? Should we do an FET with the embryos from this cycle (that are hopefully still growing) and implement Dr. KKs plan and see how it goes? Will I regret it if it is a BFN or winds up in another chemical? I hate not knowing the right path to take.

    To make matters worse, there is next to no research on this. My RE has quite a bit of ancedotal evidence showing that there is success with this protocol, but where is the scientific evidence to back this up? More specifically, where is the scientific evidence of this that isn't written by Dr. Kliman himself, the founder of the EFT? Along with this line of questioning, the population that actually requires this treatment is so small, and, quite frankly, if you make it to this point in your journey, are you willing to sacrifice potential success by participating in a study where you may wind up with a placebo treatment, or in a control group? Likely not.

     Between this, my emerging anger over my situation, and the fact that I have no damn clue about what course of treatment to take, my therapist will be hearing an earful.

    To quote Vince Vaughn and Wedding Crashers -  "I'm gonna go see Dr. Finklestein and I'm gonna tell him we have a whole new bag of issues. We can forget about mom for a while."

IVF #3: Roundup

     To recap, this cycle started with a baseline of 3 follicles and an estrogen of 195. Then I had a mental breakdown. A few days later, I had 5 follicles and my estrogen of 196. So, not a great start.

     We did everything completely different for this cycle. I was on a MDLF protocol with prednisone (for high normal Th1/Th2 Cytokine Ratio). I took 10 units of micro-dose lupron AM & PM beginning 2/8 and added300 units of Gonal-F in the AM starting 2/10. We added in a vial of Menopur in the PM on 2/12 and continued with that. I then added 20 units of HGH (Omnitrope) for four nights beginning Thursday 2/18. So, by the end, I was up to 5 injections a day!

     My follicle count grew to 11, which is the most I have ever had during a cycle, and my estrogen on the day of trigger was 3116! I was so blown away by this because I had never had an estrogen at trigger higher than 1979! However, I know how this IVF shit works...nothing good happens without anything bad...and I said to my husband "watch, we'll get 5 eggs."

Guess what?

   We got 5 fucking eggs. Ok, that isn't the whole story. We actually retrieved 12 eggs. I was pretty uncomfortable towards the end so props to you PCOS girls who have 1023232 follicles. Although I still hate you bitches because you make it rain embryos. #sorrynotsorry. #Iamkidding. #kindof.

     Annnyyywwwaaayyy, of the 12 retrieved, 5 were mature and 5 looked like they could possibly mature in the lab. 2 did. So, that brought our total haul to 7. This is hilarious because we have wound up with 7 eggs every cycle! My ovaries are pre-set on a very specific number apparently.  This is also the first cycle we have done ICSI and 6 of our eggs fertilized normally!! This is the highest number of embryos we've ever had!!!

     If I'm being honest, I'm slightly disappointed. I was really hoping more would mature and fertilize. However, 6 embryos is a totally normal number to have for anyone, let alone someone with DOR. I just feel so much pressure to freeze several embryos because I'm about to go on 3 months of depot lupron, after which, the lupron will hang out in my system and keep my ovaries suppressed for several months so stimming again too soon will yield a shit cycle.

     We are culturing out the embryos to day 5, which is nothing short of terrifying. We've never done this before. I'm praying that this protocol shift, my supplements and HGH really kicked the quality of my eggs into high gear, and that ICSI helped us get the best sperm possible.

     Mostly though, I'm just hoping that somehow, someway, my future child is in there.
    

 

You too, uterus?!

Source

     For an entire year now, since the dawn of our time at the RE, I have sung my praises far and wide for my uterus. Specifically, my endometrial lining. My lining has been the shining star of my reproductive system. It builds up like a champ and reliably puffs up to its desired thickness like a deliciously tempting pastry, it develops a trilaminar appearance with ease, and has been complemented on by many a reproductive specialist.

     Recently, my uterus, as a whole, has been taken down a notch by the identification of a Narbothean cyst by Dr. KKs people, and by finding out that my uterine blood flow was less than stellar. However, the nail in the uterine coffin came when I received my EFT results.

     My lining has failed me and I need to enter a lupron-induced menopause for three months before my next transfer.

     Gone are the days of endometrial superiority. My lining can now retreat back to the Island Reproductive Organ Misfits with the rest of my lady parts. 

     According to Dr. Wang, we did the EFT due to my endometriosis diagnosis because studies have suggested that women with endo have a higher chance of having a dysfunctional endometrium, which can negatively impact the implantation process. My results showed the receptivity of my endometrium to be decreased. To explain it further, Dr. Wang said that the endometrium is largely composed of two components - the stroma and the glands. The stroma is like the scaffolding of a building that holds up a structure while the glands are the structures embedded within the stroma that are important in the implantation process. Basically, the stroma and glands harmonize in response to the hormonal changes throughout the menstrual cycle, which allows the endometrium to prepare for, and accept, the implanting embryo during the "window of implantation."

     From my EFT, it appears as if the glandular portion of the endometrium showed delays in development, which may affect its ability to allow the embryo to implant. This specific issue is called Glandular Developmental Arrest (GDA). This was determined during the EFT analysis when they went to look for a protein in the glands called cyclin E. Normally, cyclin E is present 5-6 days post ovulation, however, to prepare for implantation, the levels should drop low. High levels of cyclin E would suggests that my endometrium did not develop properly to allow for effective implantation. Normal cyclin E levels should be less than 20%, and ideally less than 10%. Mine came in at 30%. 

     High levels are normally caused by endo, hydrosaplinx and/or an endometrial infection. I've had enough things shoved up, around and into my vagina and uterus to rule out hydrosalpinx, and I have endo, so, yup. Therein lies the reason. 

     I also have high neutrophil levels which is indicative of an endometrial inflammation, which is also common in endo. 

     Naturally, I asked a few questions about this whole situation. I asked if my chemical pregnancy was a "good" sign and he said that it was, but that repeated chemicals are, in his experience, a common presentation of this lining problem. We can also treat for an endometrial infection but the possibility of that is low, and that, the success rates associated with the three months of lupron are exceedingly high. 

     So, that's that. We can now add my uterine lining to the list of fucked up reproductive pieces. For now, I'm hoping beyond hope that my oves yield a few good eggs (& embryos!) to transfer in May. So.Far.Away.

Cycle Update: IVF #3

Source

     I started injections for IVF #3 last week so today is day 8. I'm doing a Microdose Lupron Flare (MDLF) protocol and primed with estrogen. Things are off to a bit of a rocky start.

    IVF #1 was new and exciting. I knew I had DOR and would likely not bring in a haul of eggs like many others, but overall, I knew it was a "practice round." This still didn't stop me from leaving most monitoring appointments in tears. IVF #2 was s completely different story. Estrogen priming with patches was so quick and I began stimming during a weekend away in NH. I learned to let the techs know that I didn't want to know my u/s results and I didn't read into the results. Because that cycle did result in a pregnancy, even if only for a moment, I feel pretty good about it.

     Enter IVF #3. I began injections after finding out about my Dr. KK results and that SIRM CT was closing. To top that off, at my baseline monitoring appointment, I only had 3 follicles. THREE.FUCKING.FOLLICLES. As of my next monitoring appointment, I was up to 5 follicles and I'm wondering if almost 4 weeks on estrogen priming (to accomodate batching at SIRM - something I never had to do before) I go in again for monitoring tomorrow. I'm the crazy girl who rolls up into the ultrasound room with my ipod, and tells the doctor that I can't know any information or else I'll lose my shit all day, so please don't mind me laying there, music blaring and eyes closed.

    I started the cycle with 10 units of lupron AM and PM. Then a couple of days later I added in 300 units of Gonal-F in the morning along with the lupron. After my last monitoring appointment last week we added in a vial of menopur at night. I was on Estradiol until yesterday.

     I'm not feeling great about this cycle. It's not starting great and it's looking like it could yield the fewest eggs yet. I know the egg count doesn't necessarily mean much, but I had the highest hopes for this cycle. Stupid me. Worse, if this cycle doesn't get us some embryos, we run the risk of having nothing to transfer at the conclusion of the depot lupron treatment, if needed. That shit stays in your system for months  after the last injection and would effectively kill any stim cycle before it could even start for months to come.

    More uncertainty. More waiting. Less hope. That's where I stand today.

The Day the Music Died. Or, what happens when your fertility clinic is closing!!!

     Fresh off my overwhelming consult with Dr. KK the other day, I was feeling a bit dizzy. Somehow, even though my immune issues were super tame compared to most, and didn't require any sort of heavy machinery to tackle, I wasn't prepared for the realities of managing yet another medical provider, flying back out to Chicago for a blood flow check once I start Lovenox, or for all of the blood work that would be entailed. I had heard warnings about all of these things, but it hadn't really sunk in.

    So, imagine my surprise when that call is almost immediately followed by a call from my RE at 5:30pm telling me he had some bad news. I immediately figured he was calling about my EFT results, and told him I was prepared to hear what he had to offer. I was wrong.

    Apparently SIRM (and, like 70-80% of the fertility clinics in the U.S.) are owned by a company called IntegraMed. In June of 2015, SIRM in NYC (or, IntegraMed) forced Dr. Wang to open the SIRM CT office and direct it. I'm told he didn't want to go, but he did. I'm assuming he had some sort of a contractual obligation. Anyways, he uprooted his life, picked specific staff to accompany him, uprooted their lives, and caused chaos amongst his patients...many of whom weren't able to commute out to CT from NYC, and many who have killed themselves trying.

     And at 5:30pm on this day, Dr. Wang was calling to tell me that SIRM CT was closing...a mere 8 months after opening. Panic ensued. Dr. Wang was so professional and forthcoming about explaining why this was happening, and where he stood in it all. Basically, IntegraMed decided to purchase CT Fertility - a competing clinic that is about 15-20 minutes away from the SIRM CT location, because it's owner is retiring. It's been open since the early 90's and apparently is a very popular clinic with a loyal patient population. It's all dollars and cents, and it will be a much smarter business decision to stick with that established practice instead of keeping SIRM CT open.

     This is where things get sticky. Dr. Wang was offered a position at this new clinic, but isn't sure how he feels about it. He doesn't know their practices or lab, and feels that he cannot decide whether to go there without more information. He was also offered to work at SIRM NYCs satellite location in Westchester, NY - meaning he would see patients there and do some monitoring and minor procedures, but retrievals and transfers would be in NYC. Finally, he may leave SIRM altogether (whaaattt!!!!) for greener pastures (although, they've been fucking with him so much I wouldn't blame him if he shit on Sher's desk before peacing the fuck out), and may visit with his sick mother and mother-in-law in Taiwan for a bit. He gave me all of my options in this scenario, knowing that we were about to embark on a cycle. He wanted me to have control over how this went down, and for that, I'm so grateful. He was so transparent, and being so goes a long way to making this shitty situation much more palatable.

     I managed to hold my shit together for the conversation, which I am quite proud of, and asked some thoughtful questions, like, where the fuck are my embryos going to be living, yo?! CT Fertility will be using the SIRM CT office (since it's shiny and new) for their practice and I'm assuming that our embryos will be chilling there, which isn't something I'm really comfortable with since I know jack shit about this new practice. If Dr. Wang stays at the new practice, then everything will be copacetic and easy. If Dr. Wang goes, my embryos and I want to follow. If he goes to Taiwain, my embryos and I plan to pack our bags and head to SIRM NYC. SIRM NYC is our backup. It's a great clinic and a good lab, and if we are going to travel 2.5 hours to a clinic, we may as well add 45 minutes to the commute and go somewhere fun like NYC. Sorry, Trumbull, CT, you no interesting!

   Basically, Dr. Wangs FB group (yup, I'm a groupie), have banded together to write IntergraMed a letter outlining our demands. First, since almost all of us sought out Dr. Wang and NOT SIRM specifically, we demand that they move our embryos to the clinic/provider of our choosing without cost to us. Second, the wait list at SIRM NYC is cray, especially for Dr. T. So, we decided that since this was a hardship being brought unto us, that IntegraMed must guarantee that any of Dr. Wangs patients who choose to stay with SIRM have expedited appointment times with their new providers, within 1-2 weeks of transferring to the NYC office. I refuse to hop on a 4-month wait list after this bullshit.

    As you can imagine, this was me after hanging up the phone:

   So, now we wait to see what Dr. Wang is going to do. When he puts up his bat signal, myself and the rest of the Wang Gang will follow.

A Dr. KK Update

     Welp, I finally had my follow-up telephone consult with Dr. Kwak-Kim. It's not that I waited long, it's just that I'm impatient. All-in-all, the follow-up went really well!

      It's a bit difficult to understand her at times due to her accent, and the fact that we were communicating over the phone. She also didn't really explain things well. It was a bit difficult to follow along with what she was explaining, and particularly, to understand what lab values of mine were off or normal. My only real complaint was that she didn't seem to know me from a hole in the wall as she was speaking to me...I could hear papers rustling as she was speaking to me, so I kind of got the impression that she was viewing my results for the first time as she mentioned to me I should have a thyroid scan done, but I did have one done at her office, but she didn't see the notes until I pointed it out. Also, whenever their was an elevated value, she didn't quantify it, so I don't know how "off" it was. To be fair, I didn't ask.

    First things first, my TSH came back at 2.66. This has been pretty consistent over the last year, except for a reading I just had in December where it was 1.25. None of my REs have been concerned with it, but she would prefer it to be under 2, so she prescribed 25mcg of Synthroid daily.

    Second, and what I already knew, blood flow to my uterus isn't great, so she prescribed lovenox injections for transfer. We have planned for a freeze-all for this IVF in anticipation of this, so I'll begin taking it at some point before that. However, a curve ball was thrown...I need to fly back to Chicago for another ultrasound to see if my blood flow has improved once I start taking it. It makes sense, but damn, I wasn't anticipating that.

    Finally, she said my T Helper Cells were elevated, I think. She may have been referring to my Th1/Th2 Cytokine Ratio or they may all be the same thing. I can't tell and this is where I got the most confused during our conversation. She's prescribing Prednisone to begin a few weeks before my next stim cycle. I'm actually already in my next stim cycle, but Dr. Wang already prescribed me Prednisone for my high normal Th1/Th2 so I started that when I began my protocol as well instead of having started it a few weeks ago like KK would have preferred.

   She did mention that if the Prednisone didn't work, I would have to do IVIG, but I'm pretty sure that is where we draw the line. It's super expensive, and even if it is covered by insurance, I don't know that I'm comfortable with using a blood product if it isn't absolutely required. In any event, she's running it through my insurance because coverage, if applicable, can take a while.

   Mostly, I'm overwhelmed with the amount of blood work required. I have to go back in two weeks to re-do my TSH and see if my Synthroid needs to be altered, as well as my free insulin level (which was normal, but she said it was higher than it should be for my age...so, maybe that's because of the 20lbs I've gained, or my crazy sweet tooth..) and two weeks after that.

    My plan is to e-mail her NP to explain that I'm stimming already so they know where I am in the process and can  view my lab results with that in mind. When I wind up having my FET, I'll follow her protocol fully. It's overwhelming adding a third provider to the mix, but I'm happy we went this route and can add a few more things to my protocol and hopefully find some success.

    

I HATE IVF

     Today was finnnaalllyyy the day that I was slated to go in for my baseline for IVF #3 and I'm certain this is going to be my worst cycle yet. An epic fucking failure of a cycle. Mark my words.

     After my chemical pregnancy in November, I had an annovulatory cycle. This put off the EFT, and switched me from cycling in January to cycling in February. In January (on CD 13 to be exact), I went in for my 3D saline sono and we happened to see 11-12 antral follicles. Holy shit. With numbers like that I could make it rain eggs. And so I entered my baseline this morning full of hope and optimism.

     Actually, I'm full of shit. Since school started my anxiety has been out of control, which was compounded by the anticipation of my Dr. KK and EFT results, which was further compounded by average IVF stressors, which was further compounded by the fact that MY FUCKING FERTILITY CLINIC IS CLOSING!!!! I can't even get into that now, but trust me, that information took the pile of shit I was wading through and made it look like a sun shiny day.

   Anyways, in true "my luck is absolute shit" fashion, I rolled up to my baseline appointment ahead of a winter snow storm. The only clinic that would monitor me locally and go through my insurance was Mass General Hospital (MGH). The doctors do the monitoring there, which is a huge shift from Boston IVF and meant I had to wait for the doctor to see me. I was fairly convinced that I had been left for dead in the ultrasound room, and had begun napping with my feet in the stirrups, when the doctor graced me with her presence. She was so sugary sweet to me and it was so disingenuous, but whatever. She proceeded to tell me I had a cyst on my right ovary (no shit), and when I pointed out that it's actually 2 cysts, and that they are endometriomas, she proceeded to educate me about how we "won't know how much the cyst is impacting my cycle because I'm already on estrogen." Ugh yea, lady, about that, they're effing endometriomas and they're fine. Way to listen.

     Mostly though, I wasn't aware that the doctor required the use of a medical assistant to write down my follicle measurements. Which meant she had to verbalize all of the follicle information. Which meant I heard it. I can't believe I forgot to tell them I didn't want to know anything about my numbers. It leads to personal disaster. My baseline AFC was three. Yup, 3.

     Apparently my old clinic categorized my last baseline AFC as "2-4" follicles on each ovary...so I could have been anywhere between 4 to 8, which would make my paltry 3 seem not so bad if I was on the 4 side of things last time. In any event, I ugly cried all day, threatened to cancel the cycle, threatened to stop fertility treatments altogether. Oh, and I decided a blizzard would be a great time to take up running...while donning a parka and winter boots. Mind you, I haven't worked out since August 2014. When running lasted about 10 seconds, I switched to power-walking around my neighborhood for about an hour and a half listening to my favorite angry songs from college....still in a blizzard.

    We decided to proceed with the cycle. I'm seeking confirmation, but it seems like I can cancel at any point before retrieval and it won't affect the number of cycles I'm allowed by insurance. So if my follicle count doesn't increase, we'll cut this cycle loose. If we make it to retrieval and have a shit amount of embryos (again) I'll be so disappointed. Especially if my EFT results come back that I need depot lupron because it takes about 6 months for the lupron to leave your system, so after one FET post-lupron, we'll have to wait about 5 more months before we can stim again.

     I'm so frustrated and sad about this. I had the highest of hopes by getting all of this testing and switching to SIRM and Dr. Wang, and so far, all it's brought me is additional waiting, profound disappointment and intense stress. It's not funny now. I really need a break. IVF has been a series of disappointments and bad news and there truly is only so much of that someone can take before they break.

    

When is enough, enough?

     There are a few things that have shaken my core this week, and planted my seed of doubt about this whole process even deeper.

     First, I stumbled upon this gem of an article, detailing a woman's death, and subsequent resurrection during labor and delivery. After 7 rounds of IVF, she was pregnant with her second child, yet somewhere around the 20-week mark, after finding out she had a placenta previa, she began having visions that something was horribly wrong. Well, something was. After birth she suffered from an amniotic fluid embolism, flat-lined, and was brought back. Had it not been for a physician who bought in to her intuition that something bad was going to happen, she would have stayed dead. Anyways, the article then delves into intuition - and how it is often correct.

     Well, what the fuck does that mean for me?! I've had an "intuition" that there is no way in hell that I'll ever get pregnant. Then I did. And while having a chemical pregnancy actually restored my faith in having a baby someday (hell, it's the most pregnant I had ever been...), I'm having doubts.

     Do my strong feelings that I won't ever get pregnant stem from an unconscious awareness? Or, am I just trying to protect myself from heartbreak? Is it next-to-impossible to picture myself pregnant or as a parent because it isn't meant to be? Or, is it because I feel so far removed from those outcomes that I can't even fathom it?

     Friday night I was at dinner with some friends from the mind/body group at my fertility clinic, and I mentioned that my greatest fear is that all the infertility treatments in the world won't work for me, and re-iterated the widely-known fact that not everyone comes out of this with a baby. My friend, L, was quick to shut that thought process down, by detailing an article she read that stated most couples (I think she said 90%) would get pregnant with IVF if they stuck with it long enough. No shit. If I had the time, energy, wherewithall, money and motherfucking sanity to endure 25 IVF treatments, I would sure as hell imagine that one of them would work.

     But, how many women and couples really have it in them to wait it out?
 
     The final blow to my shaky optimism moderate pessimism (woo hoo! I've downgraded from severe pessimism!) was reading two separate Facebook posts from women who just received BFNs and decided that they were no longer going to pursue fertility treatments. I found this beyond heartbreaking. Both for the couples making the decision, and for myself, in anticipation that we will soon be in this situation.

     So, which is it? Is it my intuition that is guiding my fear? Or is it my fear that is feigning my intuition?

     We'll know soon enough.

The Endometrial Function Test

      Yesterday my husband and I took a trek to SIRM-CT to visit with Dr. Wang and allow him to stick another fun tool into my uterus in the name of infertility. On the plus side, it was my husbands birthday and I gifted him with a sperm DNA fragmentation test. He got to jerk off and I got pieces of my uterus scraped out. Fun day.

    Truth be told, I've tolerated all of the invasive infertility tests like a boss. And yes, I'm pretty damn proud of this. There isn't much my reproductive system does well, so if pain tolerance is something I can brag about on behalf of my ute, then so be it.

   To date, I've had the HSG, an in-office hysteroscopy and a 3D saline sono and haven't really had any difficulty or great discomfort with any of them, but this test had me a bit nervous. I couldn't find my gluten free ibuprofen (yup, the life of a Celiac patient...) so I decided to go commando on the pain control front. I was stationed in a typical obstetric room and Dr. Wang showed me the tool he would be using. It looked a bit like this:

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     Basically, it's a plastic catheter that has an inner portion. You insert it into the uterus and gently pull back on the interior portion which creates a vacuum-type force that aspirates the endometrial contents into the catheter. The goal is that the RE will continue to aspirate as the catheter is slowly removed so a variety of endometrial tissue is obtained, and not just tissue from one spot. Basically, you need a representative sampling of tissue for the most accurate result. Dr. Wang had to go in twice to get enough tissue. It wasn't uncomfortable getting the catheter in, but I'll admit there was some discomfort as he was aspirating, but nothing that I couldn't deal with. I felt some intense cramping but it wasn't anything beyond what I have felt with my period. However, I will say, if you wanted to die during the HSG or any of these other in-ute tests, then this once won't be a piece of cake. It was pretty quick, and then it was done. My husband was allowed and encouraged to be in the room, which I really appreciated. Its high time he sees some bloody catheter action and realizes that my portion of IVF treatment isn't all illicit back-alley patient rooms with porn assortments at the ready.

   All-in-all, I believe the test is costing us $595 + shipping. We chose the EFT over the E-tegrity test because Dr. Wang felt that it's the "safest" test. He said that there have been incidences where the E-tegrity test has come back normal, but the EFT came back abnormal, yet he hasn't really seen it come back the other way around. So, worst case scenario, the EFT comes back erroneously abnormal and you receive treatment for it....but I think that is much better than getting an incorrect normal result and wasting more embryos on a shoddy uterine environment.

   Now, we wait. The DNA fragmentation results should be back in a week or so. We are doing ICSI regardless, it's just a matter of whether we add PICSI into the mix instead. It will take about two weeks to receive my EFT results, and I have my follow-up with Dr. KK in about two weeks as well. Then, as of February 8th (hopefully!) we have our baseline and start stims for IVF #3.

 I really feel confident that once we sift through all of the results, we will really have our full infertility picture, which, for better or worse, will be such a relief.

The Luck of the Infertile

     I'm a graduate teaching assistant (TA) and today we had our pre-semester training. One of the girls I TA with did IVF last semester due to male factor infertility (MFI). Long story short, we commiserated over our infertility journeys and then she went on to get knocked up during her first IVF and sock away 10 frosties!!! For a DOR girl who is now headed to IVF #3, I think she can eff off. Nothing against her, I just think that women who get pregnant on their first IVF AND have a fucking trillion frozen embryos are "the infertility fertile." She'll get her whole family on those embryos and then some while I'm all over here with jack shit.

     Mostly, I'm pissed at her because after I told her I was having a chemical pregnancy (in November), she immediately went on to tell me how her betas were so high they called her in for an early u/s to make sure everything was ok. And they saw everything they needed to. But, she was nervous because there was no heartbeat...at like 5w1d pregnant when its very much not expected to see one and she knows it. Fuck her.

      I may or may not have gone home after that encournter and collapsed into a breakdown of epic proportions. It was seriously my lowest moment in infertility. Luckily, I've rebounded a bit from that, but my world spins on a shaky axis, which is already slightly off-kilter due to the birth of my friends baby earlier this week.

     Anyways, my plan for the day was to avoid her. I just can't. Seriously. So, I was doing a great job directing my attention to my phone and pointing my glare in the opposite direction when another TA walks in and she's visibly fucking pregnant. WHAT THE ACTUAL FUCK?!

Ok, fine. Sneak attack. I can deal. Right?? Wrong. My boss then proceeds to notice the pregnancy, squeeee about it for ten damn minutes, repeatedly bring it up throughout the day, and then  facilitate a baby conversation that went on forever. Ugh. Not today. Not now. Not when I'm on shaky ground. Not when my anxiety is sky-high, not when my cycle is starting and test results from Dr. Kwak-Kim are going to come rolling in.

Obviously I don't expect the world to revolve around me, but would it kill the world to throw me an infertility softball one of these days? 

Taking Infertility to the Skies

     Last Friday, we did something super ballsy. We got on a plane and flew to another state to see a doctor. That is really something I never thought I would do. Ever. I would always read about these couples who travel to SIRM or CCRM from across the country, and thought, wow, that's fucking nuts.

Yet, there we went...off to Chicago to see Dr. Kwak-Kim, one of three reputable Rerproductive Immunologists (RIs) in the country. There is a pretty awesome website that was developed by the fine ladies behind the reproductive immunology group on Yahoo that can be found here. It outlines who should go see an RI, what tests the run, basic costs and which REs will play ball with an RI.

Reproductive Immunology is considered somewhat "experimental" but is gaining traction. It has always made sense to me that the immune system plays a role in conception and pregnancy, so after our first IVF failed, I got to business setting up a consult. I have Celiac Disease, which is an autoimmune condition, and endometriosis, which I also have, is also considered an autoimmune issue. That, combined with my lack of pregnancy in any way, shape or form, led me to seek out an RI.

I researched RIs and realized the Dr. Braverman of NY, Dr. Kwak-Kim of Chicago and the Alan Beer Center - named after the pioneer of Reproductive Endocrinology (who also wrote the book Is Your Body Baby Friendly?) were the main players in this game.

Dr. Braverman charges like $3k to meet with him and requires you to cycle with him, but mostly, I heard he's an ass hat. The Alan Beer Center is in California, and Dr. Kwak Kim came highly recommended. Plus, she studied under Alan Beer himself.

To schedule an appointment, you are required to send her office medical records from all providers - which, for me, included my PCP, Metabolic/Genetic providers for my PKU, my current RE, my surgical OB and my GI doctor for my Celiac. I had all the records sent to my home, and sent them off in a packet, along with the new patient form. I received a call within a week to schedule my appointment - the earliest of which was 3 months later on January 15th. 

We flew in Thursday afternoon, picked up our rental car, and drove the 30+ miles to a Northern Chicago suburb. We camped out in a local hotel for the night and arrived bright and early at 7:45am for a whole host of appointments.

The first thing I learned at my 8am ultrasound was that I can't follow directions for shit, as I did NOT show up with a full bladder. What a fail. I chugged 3 cups of water and they started with a 35-minute internal exam to view my insides as well as the blood flow to my reproductive pieces. Turns out, while blood flow to my ovaries is good, my uterine blood flow isn't great...and the ultrasonographer thinks I will need Heparin.

Also, my endometrioma on my right ovary is actually TWO endometriomas...one bigger one that is squished next to a smaller one. But despite that, the blood flow is good!

The biggest news to come from the ultrasound is that there is a 16mm cyst either on the lower uterine segment or on my cervix...the exact location will be determined after Dr. Kwak-Kim consults with some other practitioners on it. So, that doesn't sound great from a pregnancy perspective.

From there, an external exam was completed and I was ushered to my blood work appointment - where 19 vials of blood were taken. This makes about 40+ vials of blood that have been taken since Christmas Eve. I'm so badass.

After that, I had a health history and physical exam by the NP. She was awesome and totally indulged my NP-student desires but explaining the assessment to me and making sure I heard and felt all of the things I was supposed to.

Finally, a few hours later, we were led into a meeting in a conference room with Dr. KK, a student and some sort of a physician helper. She briefly went over my history with me and explained the preliminary findings from the ultrasound. She was very nice and knowledgeable. We have a phone consult scheduled for Friday 2/5 to go over the full results and receive her recommendations. She also stated that because I'm already diagnosed with autoimmune issues, particularly Celiac, she sent me for a thyroid scan after our meeting, which showed a perfectly healthy thyroid. Finally, we were handed a booklet that outlines all of Dr. KKs treatment protocols.

All-in-all, it was a productive and overwhelming appointment. She suggested putting off our next cycle but I'm going to compromise and suggest a freeze-all. Since the bloodflow to my ovaries is good, I think I should stim well, and of all of her other treatments, there really isn't anything that will affect my egg quality other than IVIG, which we won't do if it isn't covered by insurance. I'm praying that since my NK Cell level is good, IVIG won't be recommended. Our cycle start is estimated for 2/8 so we can have our full results back before embarking on our cycle.

The hard part now is management. Dr KKs results needs to be sent to Dr. W, test results from Dr. W (like my EFT scheduled for Friday 1/22) need to be sent to Dr. KK, and I need to keep up with my old fertility clinic since I will be receiving external monitoring there.

Overwhelming. But hopefully fruitful...at the end of the day, switching to such a great doctor and seeing Dr KK paints the entire picture as much as it medically can. So if things don't work out, or if we move on to donor eggs, I'll know we did everything we possibly could.

A Punch in the Gut

      Normal, everyday life is comprised of a series of little surprises. Some good, some bad, and most are average. These mini events lead to happiness, joy, anxiety, excitement,  and anger. You name it, and you feel it over the course of a given day. In the Land of Infertility, nothing stings more than an unexpected pregnancy announcement. In fact, I wouldn't even say it stings. It's more like a punch to the gut.

Over the past few weeks I've been trying to heal from a chemical pregnancy and the overwhelming journey that 2015 has brought me on. Between therapy, my mind/body group, acupuncture and mediation, I've really worked hard at keeping my calm during this storm. I've finally stopped feeling like a kicked dog every time I see a pregnant woman, and I've stopped rolling my eyes at them. Now, I mostly study them walking throughout the stores, conducting their pregnant business as if they are curious creatures who, by virtue of getting pregnant, have performed a magic trick for which I will never know the secret.

I have begun to accept infertility, and have learned to expect that everyone I know will end up pregnant, and will likely give birth before I do. I have a tally in my head of friends who are pregnant, those who are trying, and those who will likely try soon. It's a not a sick obsession (although I'm sure my husband would beg to differ), rather, it's a protective mechanism. If I can stay on the defensive and on top of this fertility roster in my mind, then I won't ever fall victim to the unexpected pregnancy announcement, for I know when to expect them all.

Yesterday I found myself on the losing end of that game, with a one-two punch to the gut. In a 30-second time span, I received news that my father was in the hospital and may be having a heart attack, and that a college friend of mine and his wife are expecting. The pregnancy notice came complete with a group text (to ensure that you constantly have to re-live this information with every response from the group) as well as an ultrasound photo. The worst.

The group text messages began pouring in, with everyone exchanging excitement and due dates. I was still disoriented about the news of my father and simply responded to the text with "Congrats. Please remove me from this group text." I then tried to re-focus my energy on my dad, who, while still hospitalized, did NOT have a heart attack, but is awaiting further cardiac function tests over the next day or two.

I knew my friend and his wife were going to begin trying last winter. I knew she would likely get pregnant soon. I'm guessing it took them about 9 months to get pregnant, which is better than hearing it happened immediately, but still. A group text complete with an ultrasound photo is as bad as it gets. I would love to say that I'm someone who "is happy for other people but sad for myself" but that simply isn't true. I'm not happy for them. I'm not excited for them. I don't wish them harm. I don't wish them trouble conceiving. I just am blah about the whole thing.

In an abstract way, I feel that each person who gets pregnant moves me further away from pregnancy myself. I know that is not true, and I know that another person's pregnancy has nothing to do with me, but each announcement is another reminder that everyone else is able to do something that I can't. And that sucks. Badly.

I did go on to apologize to my friend and explain the news of my father and through gritted teeth, I extended another congratulatory message. For now, I walk away from another gut punch, bruised, but okay.

MTHFR

I find it super fitting that my latest diagnosis is for a mutation in the MTHFR gene, because my first thought when I see that abbreviation is "motherfucker." Which pretty much sums up my gut reaction to every single piece of reproductive news we have heard this year.

Essentially, having a MTHFR mutation affects folic acid use and metabolism by the body. I have a heterozygous mutation, which means that of the two copies of the genes that exist in my body (one from my mom, one from my dad), one copy is normal, and the other copy is mutated. From what I have read, this means that the body functions influenced by this mutation operate at 60-70% capacity. If you have a homozygous mutation, or a mutation in both copies of the MTHFR gene, your functioning is significantly lower. From my reading, it is important that your homocysteine levels are checked in conjunction with your MTHFR genes, as MTHFR transfers homocyteine into another compound in the body (I can't remember the details), but its common for your homocysteine levels to be elevated, which can lead to cardiovascular problems and body inflammation.

This sounds pretty scary but the treatment is actually pretty easy. For me, all of my other values were normal, so I just have to supplement with a prescription called Folgard. Its a high dose of folic acid, with some B vitamins thrown in. For individuals with a more severe mutation or abnormal values, methylfolate and B vitamins are prescribed, however, your lab values should be carefully monitored to make sure that you don't go from under-treating to over-treating as these vitamins come with significant side effects when on inappropriate doses.

So, another diagnosis to add to the list and I haven't had even a fraction of the tests that Mr. New RE wants to prescribe. If I had a dollar for each infertility diagnosis...I could pay for an entire IVF cycle! 

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The Calm After the Storm

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      IVF is a giant, fucked up roller coaster ride of emotions. At first, you are super excited to try something new. Then reality sets in that several weeks of your life will ultimately culminate in one stupid test and you start to freak out. The other part of  the equation is that unless you are one of the 30-40% who get pregnant the first cycle you do IVF, have 434333 frozen embryos and generally swim through IVF, you wind up going up shits creek without a paddle each and every cycle. As I am thoroughly up shits creek enduring a shitstorm, I'm going to focus on the unlucky group of us who struggle through IVF.

IVF has taught me to never be too optimistic, no matter how great things are going, because inevitably, your infertility will find a way to fuck you up at some point. Case-in-point, my first cycle, I left my monitoring appointments balling my eyes out over how few follicles I had, yet the cycle ended on an upswing when we retrieved 7 eggs and had 4 fertilize. We had a downswing again when I ended up needing a 3 day transfer, but up-swinged when it was a really excellent embryo. That cycle resulted in the biggest kick to the balls yet when I got my motherfucking period two days before beta. That sucked so bad, and while I thought I dealt with it well, I didn't. It really demolished me.

IVF #2 was sure to bring great things as we were moving on to an estrogen priming protocol (EPP) for poor responders. The stimming process went awesome. I got my period unexpectedly early (which was very exciting since IVF is so much of a hurry-up-and-wait process) and I started stims as we went on a weekend away in the mountains. My estrogen levels and follicle counts were a bit higher this cycle and I set my sights on retrieving 10 eggs. The downswing was when we retrieved 7 eggs again (WTF?!?!?) and only 3 fertilized. When I heard that, I lost my shit. Having learned a thing or two from the previous cycle (and after threatening to not attend transfer), we transferred two embryos on day 3 - an excellent 8-cell and an average 10-cell. Unfortunately, that resulted in a chemical pregnancy, which was actually super exciting to me as I never thought I would get pregnant ever and I did. 

I can't really adequately explain the depression I fell into at some point in this process. After 6 months of testing alone, followed by two IVF cycles and no baby in sight, my body and mind finally had enough and we succumbed to infertility. I finally realized that I had been fighting this path that I'm on, and it resulted in so much anger and resentment - mostly focused on those who were fertile, and then on those for which IVF worked immediately. Accepting infertility really helped to change things up for me. A therapist, mind/body group and acupuncture also do their fair share in keeping me (somewhat) sane as I exist in this infertility limbo until next cycle. 

What has helped you endure this battle?