Wednesday, November 13, 2013

A heartbreaking week...


Egg retrieval

Friday night before my egg retrieval surgery Jared and I headed down to King of Prussia…we had an amazing meal at The Cheesecake Factory and then headed back to our hotel to veg out (and eat cheesecake and try not to freak out about what was happening tomorrow!).
Yummy!

 
Bright and early on Saturday we were up and we headed over to the office (literally almost across the street) at 7:00. Almost immediately I was whisked away by a nurse. In retrospect, I wish I would have kissed or hugged Jared goodbye at this point – I didn’t know I wasn’t going to be seeing him again until after! The nurse had me change into a hospital gown, silly grippy standard issue blue socks, and the glamorous surgery hair net thing. I was so nervous - I peed twice even though I hadn’t had anything to eat or drink since about 10:00 the night before! She asked me some questions and checked my vitals. Then the doc stopped in to say hello, presumably having just finished the procedure before me. I had met him before – he had done a scan or 2 for me before Dr. Nguyen came to Mechanicsburg and he was actually the doc that did my last IUI. He asked if I was nervous…I told him yes but that I was trying not to think about it and so far I was just doing what each person was telling me to do! The best thing about this wait is that they cover you with a blanket that has been kept in this amazing blanket hot box device (note to self: must research getting one of these for the house). If I was going to be scared out of my mind, at least I was warm and cozy!
I was then moved to the next room where I met with the anesthesiologist. He asked me a litany of questions and checked my vitals again. As he was trying to jam a needle into my hand, he was trying to “distract” me by asking me about where I was from and all that. I had no interest, haha…I was trying so hard to be sociably but IT HURT! Apparently things did not go as expected because soon he was after the vein in my arm. That one hurt, but not nearly as bad as the hand. At this point, I started to panic. As I sat there, in pain, with a needle in my arm, with surgical garb on, surrounded by strangers in a fluorescent lit room at 7:15 in the morning, I just had a flash of a friend who had announced on Facebook the previous day that she was pregnant…AGAIN. In one overwhelming moment, I was just angry and sad and scared. Of course, the anesthesiologist thought I was having a panic attack and just tried to get me to breathe. Soon he was pumping me with fluids and I sat there…just trying to breathe in and out.

Before I knew it, it was time to go and they walked me into the operating room – it was huge and in the center was a chair-like thing with padded stirrups that held almost your whole leg. As I sat down I looked up and saw one of those big round surgical lights with the handle in the middle and I remember thinking that it was just like on Grey’s Anatomy. I literally said to the nurse and anesthesiologist, “wow, this just got real.” In a flutter of activity, they were moving me and strapping me, and hooking me up to stuff – terrifying. One of the last things I remember is getting an oxygen tube stuck up my nose and telling them I could feel something in the back of my throat…then I felt the meds kick in and it was lights out.
Of course, the first thing I said when I woke up was, “Is it over?” I was so happy with that fact alone. The first few minutes are fuzzy but I remember them wheeling me into recovery and hearing the most amazing words – “33 eggs”. Let me clarify that the average IVF egg retrieval results in 8-15 eggs. We knew there were going to be a lot but WOW. I immediately asked for Jared and was so relieved when I saw him. I cried when I told him the egg number. At this point, I was definitely in some pain but it was really not bad at all considered that they had just poked holes in my ovaries. It felt like period cramps but not even like the worst period cramps I’ve ever had. We sat there and hung out for about an hour. Jared was texting friends and family that all went well and they were periodically checking my vitals and going over what meds I was to start taking and other post-op instructions. When I was ready they gave me some orange juice and graham crackers – yum! When I was cleared to go, I just changed and it was off to Mifflintown for a day of R&R!

Hanging out in recovery - so happy it's over!


 The remainder of the day I was pretty narcoleptic and just laid around. The pain was a little persistent but manageable with Tylenol. I was thankful to not be feeling worse and also fearful that hyperstimulation symptoms were going to show up. I was definitely bloated but felt it wasn’t anything out of the norm. I started to feel worse in the evening so by 8:30 I decided to hang it up and went up to bed – I slept for almost 12 hours!
Embryos week
The next morning I felt much better – a little pain/tenderness and a little bloating. As we were eating breakfast in the kitchen, the embryologist called – 26 of the 33 eggs had fertilized! I cried. I think at each step I had been prepared for something crazy and rare to come along…the follicles would be empty…the eggs would reject the sperm and not fertilize... The average fertilization rate is 50-70% so we were officially above average. Jared and I just didn’t know what to do with all this good news. Looking back on those 2 days – it was like everything was going perfect. Too perfect.
Monday morning the embryologist called again. Right away I panicked because I could sense a tone in her voice – like someone preparing to deliver bad news. She said that 10 of the embryos failed to “cleave” (i.e. cells didn’t divide) which she thought was odd. She commented that this might even be the cause of my infertility. (I am thinking – “oh great, just add it to the list!) Of the 16 remaining, she said she was happy with the morphology (or quality) of about half. Then she said she would call early Tuesday in the event they decided I need to come in for a day 3 transfer. (Day 3 transfers occur when the embryos are not doing well vs. a transfer on day 5 which is the goal.) I was shocked! Plus, there was the idea of having to stop everything and drive to KOP the next day (the embryologist was quite shocked when I told her we were 3 hours away…I was thinking  ”guess what, lady – we don’t all live in Philadelphia!”) Everything seemed so hasty and uncertain. I felt upset and confused after the call. I waited all day hoping my doc or nurse would call to talk about the potential for a day 3 transfer. Finally after Jared called them, I got a call from my nurse. She said according to the notes, there were 16 ongoing embryos and even from as many eggs as we had, this was normal. (I really felt that if the same info had been delivered in a more positive way, I would not have been so upset.) She was very surprised to hear they mentioned a day 3 transfer and she didn’t know anything about it. She told me Dr. N was going to call to touch base with me.
Another question that was raised by all this was whether we were going to be doing a transfer at all. Last we knew, it was very probable that we would be freezing everything due to my hyperstim risk. However, except for a pretty severe case of constipation, I had been feeling pretty good. I was consistently the same weight every morning and my bloating and soreness seemed reasonable to me. I began to hope that we would be able to do a day 5 transfer after all.

Tuesday morning, Dr. N called. She started the report with “ok, are you ready?” I really felt she was going to tell us there was nothing left or that what was left was not good enough quality to be transferred. What she did say was that of the 16 embryos remaining, 7 had stopped developing or were not healthy. That left us with 9 embryos. In terms of quality, unfortunately, we had no A+s, a few As, and mostly Bs. UGG. However, the embryologist feels that there are a few that are healthy enough to make it to day 5. YES. But, because of my soaring estrogen levels and risk for hyperstimulating, they wanted to freeze everything that’s left at day 5 and delay the transfer until next month. UGG.
What a roller coaster of emotions. In 2 days, how did we go from 26 embryos to 9?! She said we might end up with only 2! The thought of this seriously concerned me because there is not a 100% survival rate when it comes to thawing embryos. Our fear was that if we freeze 2, we could end up with nothing. However, she made sure to make it known that if we would do the fresh transfer and I would get pregnant (and hyperstimulate), I would be very sick for a long time. We left it that she would discuss our concerns with the other doctors and go from there. However, the more I thought about it, the more I realized that fighting the doctors was one of the things that was making us stressed – it was feeling that we had to make decisions. Jared and I talked about it and later I emailed the doc and told her that we would concede to do whatever the team thought was best.

We spoke to her briefly on Wednesday and all the embryos were still growing but they aren’t graded on day 4 so we really got no new information. Although we did get the official decision to freeze and I got the go-ahead to stop my progesterone (used to prep my uterus for implantation and pregnancy) and Medrol (a steroid given to suppress the immune system so it doesn’t attack the embryo at transfer) since there would be no transfer this month. I should expect my period in a week or 2 and then they would start prepping me for next month. From my understanding it will just be oral meds and estrogen patches (no injections, I was assured!).
Thursday morning Dr. N called with what I thought was going to be the final pre-freezing report. She informed me that 4 embryos were continuing to grow. Somehow I was not surprised by this number and was even a little relieved –  I felt like so scared that none of them would make it. All 4 were in the very early “blastocyst” stage – the blastocyst is the developmental goal for a day 5 transfer embryo. She stated that because they were so early in this stage, the lab will wait to make the final decision on what to freeze and do the actual freeze on Friday. I didn’t ask any questions about the grading of the 4 – I think, at least for the moment, I preferred ignorant bliss to the risk of getting more negative news.

In addition to all this bad news, my body was suffering from what I believe to be the effects of mild ovarian hyperstimulation and/or the excessive hormones. My belly was still bloated and my ovaries were very sore. I was nauseous every day and had terrible heartburn. I had aversions to foods I normally love and became obsessed with certain foods (I think the week was officially dubbed “Tuna melt Week”!!). I was just a mess.
Friday was all about waiting…waiting waiting waiting…for the final call. In my head, I think I was allowing myself to hope that since the 4 embryos were all early blastocysts that they would all make it to freezing. I missed the call while Jared and I were at his grandfather’s viewing. We stepped out quickly before the service to return the call. After being on hold for what seemed like forever, Dr. N got on the line and delivered the blow. Only 1 embryo had been frozen. It felt like someone stabbed me in the gut. I didn’t even know what to say. 33 eggs and we got ONE embryo.  14 injection days, all the running to Harrisburg, a trip to KOP, anesthesia, surgery, plus the exhausting effect the hyperstimulation had on my body and not to mention thousands of dollars stripped from our insurance funding – and we got ONE embryo. I was sick.

She then proceeded to tell me that we have 2 options from here – proceed with the transfer of the single embryo next month or do a whole new round of IVF to try to get more embryos. I managed to ask her if she knew why things had gone so poorly. Her answer still rings in my ears: “It’s an egg quality issue.” She went on to tell me other things about the eggs and how they develop but it was all gobbledeegook at that point. All could hear in my head was – not only can you not ovulate, your eggs are defective.
To say that the events of this week sent me into a tailspin is definitely an understatement. Walking away from our first IVF cycle with only one embryo is heartbreaking – in addition to learning about my egg quality issue. I think that after we got so many eggs and so many fertilized, I allowed a little hope to creep in. But as I have learned over and over and over again, nothing is a guarantee. And now, I think more than ever before, I feel the need to mentally prepare for the distinct possibility that Jared and I will never have children.

We have a sit-down scheduled with Dr. N tomorrow to go over everything. I am hoping to get some more detailed answers about the egg quality problem and how severely this impacts our overall chances of ever having a baby.  At this point, unless she has some amazing pitch prepared for going right into another round of IVF, we are probably going to transfer our one embryo next month and pray for a miracle.
I feel very torn in this moment in time between "beating this horse til it's dead" - i.e. doing everything in our physical and financial power to have a child, OR taking to heart "If God shuts a door, stop banging on it. Trust that what's behind it is not for you." I've said it a thousand times - should it be this hard? We just seem to be met with obstacles at every turn. Every time we begin to have an ounce of hope, our hearts get shattered all over again. I met with a counselor for the first time yesterday. It really hit me hard when she said that, other than the loss of an infant or a small child, what we are going through is as bad as it gets. We are grieving the loss of the children we will never have.

Friday, November 1, 2013

IVF Days...

I was journaling most days while I was doing injections - I really wanted to keep track of everything that was happening...

IVF Days 1-3

On Friday (10/18), I got the official okay to start “stimming” (aka ovulation stimulation, aka doing my injections to make my follicles/eggs grow). As a bonus, Dr. N explained to me how to mix the Follistim with the Menopur so I only have to do one shot! I just have to push the Follistim (from the pen) into one of the vials of Menopur and mix it and then add a little bit of saline to get enough liquid…love her!
The starting dosage is 150iu of Follistim and 2 vials (150iu) of Menopur. I do this for 3 days and go back Monday for another scan and blood work. I was a little nervous doing my first one on Friday (it’s been a month since my last injection plus the first one for IVF felt like a lot of pressure) but it was so easy – once I got through the Follistim part (I haven’t used Follistim since April so I had to get reacclimated with putting in the cartridge and putting on the needle) it was just like mixing Menopur which I have done so many times. I am so happy to finally be starting!

As I am beginning this process, I am also mentally preparing for physical changes that will come along with it. I am cutting my running WAY back and will probably stop altogether at some point next week when my ovaries really start to get enlarged. I plan to just walk for exercise. I also need to focus on, particularly during the week, eating more (and eating healthy). I know that this combination will lead to me gaining weight. I just keep telling myself that I have to make a safe and happy home for my baby. I know most people wouldn’t care about gaining weight since I will if I get pregnant but, since we have been at this for such a long time, I have always tried not to pack on the pounds.  I am also anticipating feeling bloating and uncomfortable as my ovaries fill up with follicles in the coming days. But I am totally ready - flowing shirts and yoga pants will be my wardrobe staples!
IVF Days 4-6
Monday morning I had my first scan since starting my meds – not much to see but that’s pretty much what I expected. She said I have a good number of follicles on both sides. After my blood work came back, Dr. N upped my Follistim to 225 iu and kept the Menopur at 2 vials. It was back for another scan Wednesday morning – I could start to see the follicles on the screen but they still weren’t measurable in size. She reassured me that things were going great so far and that they are just going “slow and steady” – too much medicine at once and I could get overstimulated. Wednesday my estradiol level increased from 59 (Monday’s) to 233. She decided to keep me on the 225 Follistim/2 Menopur. So we just keep putting along.
I haven’t really noticed feeling any different this week – I’m not bloating yet, which is nice. I actually think I feel better being off the birth control pills! For now, it’s back for another scan and blood work on Friday. The NP gave me a heads up that I may be starting a new drug - Cetrotide - this weekend to keep me from ovulating prematurely. I am hoping they can give me instructions on how to mix it with my other meds so I still only have to do one shot.
IVF Days 7-9
At Friday’s scan, things seemed to be moving along. I had 16 follicles on the right side and 18 on the left, although she said some of them are really small and probably won’t develop.  Most of them were about 8 or 9 mm (17-21 is the goal for mature follicles). My estradiol rose to 560 so I had to add the Cetrotide to the drug regimen.  She also had me increase the Menopur to 3 vials (225 iu) and keep the Follistim at 225iu.
I was able to mix all the meds together and keep it at one injection, which is great. Adding the Cetrotide to the routine took some getting used to but I was able to get a new rhythm down. Saturday night I started to feel some abdominal bloating and maybe even some slight cramping/twinges – it definitely feels like something is happening in there!
 
My nightly drug regimen!

 

IVF Days 10-12
Sunday morning it was off to Harrisburg Hospital for a scan and blood work (we have to go to the hospital for monitoring on the weekends). The tech told us she measured 10 follicles on each side measuring 9 or higher! The biggest one,  I believe, was about 12. That afternoon I got the call from the office that my estradiol was up to 1,207! The instructions were to keep the Menopur at 3 vials but to reduce Follistim to 150iu. I was also to continue with the Cetrotide. They wanted to see me again Monday morning. I was beginning to feel like we were getting close J
Monday’s scan was great – the docs seem really happy with the progress and it was great seeing all my big follicles on the screen! She measured and measured and measured – 12 on the left and 19 on the right! Most of them seem to be in the 11-13 range. There were a few bigger ones – 15 and 16 – but I think she said she was going to “let them go” (meaning wait to trigger) in order to get the other group at the right size. Her best guess was that my egg retrieval procedure would be Friday. They will likely want to see me every day now. This is a bummer for my time and my veins (they are so sore already!) but it’s all about 100% effort this cycle. This one’s for all the marbles!
On a sad note, I found out after my appointment that my grandfather had passed away. It makes me sad that I never got to have a child while he was around. But I am happy that he at least got to be at my wedding and that I got to see him one last time last week before he died.
Monday afternoon I was informed that my estradiol was up over 2,200 and I was to keep the same drug regimen that night. Nothing really new at Tuesday’s scan. Jared came along and got to see all my crazy follicles on the screen. There didn’t seem to be a whole lot of growth – she said she was thinking more like a trigger Thursday and retrieval Saturday now. Of course, as Penn State season ticket holders, we were bummed at the thought of missing a home game…yet another sacrifice…Instructions were to keep Menopur at 3 as well as the Cetrotide but to up the Follistim to 200. Estradiol at 3,018! Closer! Closer!

At this point, I am feeling nervous about several things.
1 – That the follicles will poop out. I think after being used to scans every other day and seeing consistent growth, the piddly pace of every day scans makes me anxious, especially since she pushed back her estimate on the trigger/egg retrieval date.  Also, the fact that my follicles have pooped out before makes that a real thought in the back of my mind.
2- Hyperstimulation (Ovarian Hyperstimulation Syndrome – when, as a result of fertility meds, the ovaries become swollen and painful and the abdomen gets bloated and fills with fluid). The doc seemed very nervous about this and they are explicitly asking me how I am feeling each day.
3- Egg retrieval – as the possible day approaches, my nervousness grows. I even broke down and googled about it (as I always do – I am so weak!) and read some pretty scary things, especially about pain. Jared tried to calm me by telling me that only those with bad experiences write about it on the internet. He even ratted my googling out to the docs, haha – they were both, “Don’t do that! No internet!” They knew it would get me worked up.
IVF Days 13-15
Wednesday was an early, early scan -7 am! - so we could head out to Johnstown for my Grandpa’s funeral. Things really didn’t look much different but she insisted we were progressing. It was looking like Saturday would be the day, or maybe even Sunday. I got the call that afternoon that my estradiol was 4,200 and that things were coming along. Meds were to remain the same.
As an aside, I am almost completely bloated out of every pair of pants I own (I could probably get them buttoned but it would not be comfortable!) I have been doing my best to wear stretchy pants, skirts, and some of the larger items in my wardrobe. My belly looks like I just ate Thanksgiving dinner...twice...for about 3 days in a row, haha. Deep down I know that this is part of the process and I just have to deal with it. Maybe I will get pregnant and I can roll right into maternity pants!
Thursday I had my scan with a nurse from the Philly offices – she was there covering for my docs. She was great and really helpful in explaining things. I felt like I could really see a lot of growth in the follicles, particularly on the right side. I had a lot that were above 17 – it was looking good! She said she felt pretty certain I would be triggering that night for retrieval on Saturday. She reviewed with me all my pre-op procedures and meds. I think it was really starting to sink in that this was really a “real surgery” which made me a bit increasingly nervous. She was to call me in the afternoon (as always) for the official word and, if it was time, the dosage for my HCG trigger shot (which is the last step – it’s done 36 hours EXACTLY before the procedure and gets the eggs ready to be harvested).
The call was a rough one. My estrogen had skyrocketed above 8,000 which is not good. This puts me at an even greater risk of hyperstimulation.  I was definitely going to trigger that night but the doc wanted me to use “Ovidrel” (a name brand and lesser dose) instead of the generic HCG. HCG is one of the things that triggers hyperstim so the idea is to cut that to reduce the risk – however, less HCG can result in fewer mature eggs. The doc also wanted to me to start medicine – Dostinex – to reduce my chances of hyperstimulating. (Of course, trying to find a pharmacy that carried it in the middle of nowhere like Juniata County proved to be a drama in and of itself – thankfully Walmart had it!) And then the news that felt like a real blow – there is a decent likelihood that if I do hyperstim, the doc will want to freeze ALL the embryos and not do a fresh cycle at all. We would delay the embryo transfer until next month.  I was so upset and scared. Not to mention my hormones – I am really not a person of sound mind at this point! I just remember feeling defeated and overwhelmed…again. The words that have haunted me over and over – should it really be this hard?
In retrospect, freezing everything is not the worst thing in the world. The reality is if I would hyperstim, do the transfer, and then get pregnant, the HCG produced by the pregnancy would make the OHSS way worse and it would last longer. I have a friend who went through this and it put her in the hospital with severe OHSS. I am still VERY scared about hyperstimulating. From what I have read (yes, I was at it again), I could just be uncomfortable for a while (painful, swollen ovaries) or, if the fluid builds up in my abdomen, I might have to go into the hospital to have it drained out – uck! I am following orders – eating protein and fresh fruit and veggies, staying hydrated, making sure I am peeing enough, and , as of this morning, weighing myself every morning. But if I do get OHSS it probably won’t rear its ugly head until after the retrieval.
So last night (Thursday) I did my Ovidrel trigger. It is a pre-filled syringe so there was no mixing. It was so quick and easy it almost felt anticlimactic – there was so much anticipation about the “trigger” and in 2 seconds it was done! I had a final appointment for blood work this morning (Friday) – they want to ensure that the HCG is in my system. My mom came along, which was nice – to be able to show her where I’ve been going. She also got to meet Dr. N. I didn’t have an appointment to see her but I really wanted to talk to her because I knew she’d calm me down and she totally did. She still feels that everything is going to go great although the other doctors are a bit concerned about my estrogen level. But she said we will just wait to see how I feel to determine whether we will do a fresh transfer.
Jared and I are headed to King of Prussia later today for my egg retrieval tomorrow. We decided to stay over since my surgery is at 7:45 a.m. I am hoping to relax, have a good meal, and get a good night’s sleep. In reality, I am completely scared about the egg retrieval. I am trying not to think about it so that I don’t get worked up. I just have to focus on the fact that by this time tomorrow we might have fertilized embryos!