It’s been several weeks since I last sat down to update the blog with everything that has been going on since the dreaded OHSS incident etc. I’ve actually been holding off on posting because we have been going through a very stressful time dealing with our fertility clinic and attorneys etc. I will at some point get into what’s been going on with that whole scenario, but since so much is up in the air right now, I am just going to save that for another day.
Today I want to talk all about our preparation for our first FET (frozen embryo transfer) and where we are at currently. You may recall that after a very close call with an almost missed egg retrieval, we were so lucky and blessed to end up with seven blastocysts which made it to day 5/6 and were put on ice. We made the executive decision not to do PGD/PGS (Preimplantation Genetic Diagnosis/Screening) testing based on our RE’s recommendation, and to be honest, cost. PGD is not cheap (rounding $2-5,000+) and it is also not super accurate, not to mention there is some cause for concern that it may lead to more negative outcomes for the embryo (i.e. genetically altering or damaging the developing embryo). For those reasons, as well as our age (31, and 35 respectively) we chose not to do the testing. I will be honest, now that we are preparing to do our first transfer a small part of me wonders if we made a mistake by not testing the embryos and thus implanting the most ‘genetically healthy’ of them all. The other part of me is glad we didn’t do it due to the financial obligations we are currently under with having to hire an attorney.
Anywho, following our cancelled IVF cycle and our OHSS debacle, we were approved to move forward with our FET. I had reviewed my concerns with my RE regarding the almost missed ovulation during our egg retrieval, and wanted reassurance that we would not have break through ovulation, and thus another canceled IVF cycle this time around. Based on me advocating for myself… I CAN NOT STRESS how IMPORTANT it is to BE YOUR OWN ADVOCATE! I was given a slightly altered FET protocol which included a low dose of Lupron to help suppress my ovaries during the preparation period for our FET. Then the stress began..
Let me start by saying how disappointed I have been with the lack of communication from my clinic during this portion of our journey. Thank god for the internet and my budding detective work (new career anyone?) because I literally left my RE’s office with ZERO understanding as to how an FET works and what to expect. At first, I was not concerned about this, as I figured once AF (aunt flow) showed her ugly face I would call the clinic and get all the instructions I needed to proceed. Well lets just say it has not been that easy, and I truly have been having to chase down the clinic to make sure I am getting what I need to be successful this time around. To be honest, I have no idea if what I have been experiencing is typical of clinics for FET’s or not, but to me the lack of communication and understanding is unacceptable.
It all started with day 1 of AF.. any infertility warrior knows that day 1 is the start of the races so to speak. You call your clinic, inform them of day 1 and wait to here next steps etc. I followed this typical protocol, instead of hearing directly from a nurse they sent me my FET calendar via the patient portal. I wouldn’t have minded this ‘hands off’ approach except for the fact that this so called ‘calendar’ was extremely confusing.. as in I spent nearly 2 hours trying to decipher what exactly I was supposed to do on each day. My original IVF calendar was super user friendly.. like no way in hell could you mess it up. This one? was a hot mess and that’s being polite. Still with all this in mind I tried to relax and just think how exciting it was that we were starting to prepare for our FET. All I had to do was focus on taking my birth control pills for the next 14 days and then add in the Lupron.
Well I went to my local CVS pharmacy to pick up my birth control and they had no record of a new prescription on file… feeling pretty pissed that the nurse forgot to call it in as I needed to start that day, I problem solved my own solution and requested they re-fill an old birth control prescription from my clinic for me instead. I started the new pack that evening and felt better knowing I had solved my own problem. That’s when I realized I still hadn’t received any of my other fertility meds needed for the cycle (cue a heart attack as we had no clue why they hadn’t been ordered.. was the clinic with-holding our meds due to the legal battle we were in??).
Side note, this is not the first time someone at our clinic has forgotten to order ALL of the meds I need, as I found out a week before my egg retrieval that I was missing about half of the meds I needed after reading in my IVF binder and noticing I didn’t have them…. ADVOCATE, ADVOCATE, ADVOCATE people!
Being the anxious and consistently stressed out individual I am, I did what any good problem solver would do. I called the fertility pharmacy directly to see if they had any record of my meds. They informed me that they had nothing on record. Then I had to make a plan to contact my clinic. I timed my phone call perfectly so I could leave a voicemail on the nurses mailbox asking if someone could please call in my medications to the fertility pharmacy. I was hoping that the person who would get the message would fill them with no questions asked, as not to stir the pot with everything else. Thankfully, by the grace of god the ‘new’ nurse got my message, filled them immediately, without asking any questions, and I was on my way to starting my FET. A few days went by and I was greeted with a big box at our door step from the fertility pharmacy. I was like a kid on christmas morning surprised to see the biggest gift of all under the tree! Who knew doing inventory of needles, suppositories and patches would be so fun!
After unboxing everything, taking inventory of what I had from before, what I had now, and what was new, I was ready to re-organize it in my storage containers and write out my own FET calendar to check off daily. I highly suggest making out your own calendar using a small regular wall calendar that you can easily see ahead what meds to be taking, when to take them, and cross off when you have taken your meds for that day. That way you will always know that you either did, or didn’t take what you were supposed to for a day.. totally helps those of us who are scatter brained or anxious, I happen to be both.
What I found totally shocking in comparison to our initial IVF cycle is that there are only two appointments on the calendar in total before your proposed transfer day. One was the suppression check and the other is the lining check approximately one week before your scheduled transfer date. I still feel confused and a bit worried regarding this part of the process as I was one of those people who over responded to my stimulation meds, almost prematurely ovulated and ended up with OHSS. How will they know if my body is over, under or responding appropriately to all these new meds if they only check in on me once?? This has left my very anxious self feeling super uncomfortable and once again stressed. Sensing a theme here?
About half way through my 14 days of birth control, I needed to start my daily morning injections of Lupron. My dose was 10 units, just about as small as you can go. I was to keep taking this pretty much all the way through my preparation stage to help prevent break through ovulation. On February 5th, I was to meet with my RE to do an initial suppression check of my lining. My FET calendar said “if no menses by initial check call to re-schedule”. Of course as with everything else in our journey, my faux menses (triggered by starting and stoping b/c) was late. Big surprise! (can’t you taste the sarcasm!). So on the morning of my appointment, which of course happened to be a monday so I wasn’t able to call in advance to let them know. I called to say I needed to reschedule but I wasn’t sure when to reschedule it for, as my period hadn’t started yet. To my surprise they told me to come in anyway. I totally was not expecting that and began to panic that they wanted me to come in for some other reason (aka the legal stuff). I began racing around my house to get ready, to get there in time for the appointment, all the while with negative thoughts racing though my head like ‘what if they say this??’, “what should i do if ??’, ‘why are they making me come in now?’.. etc. Needless to stay my stress level was sky high, not exactly what I had hoped for my first appointment back.
At the appointment my RE did a quick ultrasound to check for suppression. In the past when I had been checked for suppression the ultrasound screen would look pretty blank, my uterine lining would be super thin, and my ovaries barely recognizable black blobs on the screen. At least that’s what I had been expecting, and apparently that’s what my RE was expecting because her initial comment was “Oh boy! your ovaries are still huge!”… I’m guessing since we are so supposed to be suppressed that oversized ovaries are not a good thing? I quickly asked her what that all meant, as my heart was pounding out of my chest. She assured me that because my lining was still very thin it probably was more related to some left over OHSS and a slight “flare” response from the Lupron.
You see Lupron is a funny little drug that can be used to instigate ovulation or suppress it based on how long you are on the drug for. Apparently, the longer you are on the drug, the more it suppresses, and the shorter you are on the drug, the more it stimulates. So what does that mean for our cycle? Well she said she would have to wait for the blood work to be done in order to find out. If it came back with low hormones we would be good to move forward, if not, I would have to go back on the birth control and start all over again. Fun times, waiting to hear back from the clinic was once again stressful. I finally got the call later on that afternoon. I had let it go to voicemail as I am currently screening all my calls. When I finally got up the nerve to press play and listen to it, I was elated to hear we were good to move forward with our additional medications for the cycle! There was no mention of what came back on the blood work so I guess I just have to assume it was within the ‘safe’ range? (Hence the prior comments about lack of communication).
Today marks my 22 day on Lupron and 41 days since my egg retrieval. I am just about 11 days from my proposed transfer date. I have been taking lupron 10 units daily in the morning, and estradiol patches at increasing amounts every other day (I’m up to four now). I also take a baby aspirin nightly with my prenatals, magnesium, CoQ10, and Fish Oils with DHEA. I have started to have some symptoms of what I typically feel before either ovulation or my period. A sense of some fullness in my lower abdomen/uterus, some twingy type pains in my ovaries, increased sex drive and increased cm (cervical mucus) sorry for the TMI. This all started to worry me that perhaps I was going to have break through ovulation even though the lupron is supposed to prevent this. I started rapidly googling my symptoms through a variety of fertility forums with both positive and discouraging responses. Some women had experienced break through ovulation even with the lupron protocol, others said their clinic noted all of these symptoms to be normal and a direct result of the increased estrogen in the body. Being the overly cautious and anxious person that I am, I have started using OPK’s (ovulation test strips) again just to make sure that my body is not producing the LH (luteinizing hormone) which leads to ovulation.
So that’s where I am at as of right now. I am scheduled for my lining check appointment this thursday and if all goes well I will begin a new series of medications to prep for the transfer the upcoming week. Those medications will include Doxycycline, Medrol, Endometrin Suppositories, and the dreaded Progesterone Oil intramuscular injections. I mean who doesn’t love a one and half inch needle in their big ol’ fanny every other day?? Thank god I have a lot of cushion back there! P.S. my stomach is turning into a battlefield with all the needle pokes and leftover adhesive from these patches, my tummy has definitely seen better days!
Until next time wish us luck that our lining check goes according to plan! That our legal woes lay low until after this transfer, and that we end up with a successful blastocyst transfer come February 28th! As, always, wishing you and yours, lots of love luck and baby dust!