April 27, 2014

One Basket

I guess it's pretty much par for the course to start regrouping and brainstorming next steps whenever you encounter an epic fail on your infertility journey.  As per normal, you first cannot help but revisit your past decisions, analyzing them for errors in judgement.  Why did we not get the embryos genetically screened, I keep asking myself.  We had five good looking day five blastocysts, which is more than I ever hoped we would end up with as we started the IVF cycle.  It was only when I joined my online support group at the beginning of the treatment that I realized that good looking blastocysts can still be majorly genetically bad.  A few girls in my group had tested embryos that looked fine, only to find out that none of them were normal genetically.  And as far as genetics go, a little too much or a little too little, or something moving to another spot--well, no amount of great uterus is going to heal that and make it normal.  Looking back, were we crazy not to do the genetic testing?  We had kept telling ourselves that we were just on the "unlucky" side of the stats two years ago.  The genetic testing costs a lot, and it also means, in most cases, you can't put any of the embryos you just tested back into your uterus right away.  You have to freeze them and wait for the results to come back in, and then do another cycle--a frozen embryo transfer (FET)--at a later time.  Since we only have three tries in total, three fresh or frozen or any combination, we hated to lose one of our put backs.  We also do not have $5500 or so laying around to toss toward genetic testing when who knows if there is a good one or two there anyway.  It's so hard to judge in retrospect.  With infertility you go along these paths, learning as you go and not really arriving at certain gut feelings until it's ultimately your time to.  You base your decisions on so many what ifs and statistics, doing the best you can to balance reason and logic with your emotional and sometimes irrational leanings.  And of course the money.  Always the money must come into play.  Had money been no object, I would have gotten that test.  I believe there is even a rush option (for a lot more $), where you can have the embryos tested on day 5 and know the results to do a day 6 transfer.  Lacking the wad of cash that would have enabled that, we rolled the dice, hoping for some good embryos.

Right as we were leaving the 7w3d ultrasound where everything went south, I kept hearing this voice in my head chanting, "we should have gotten the genetic testing."  Even my hard nosed accountant husband repeated a similar refrain of "we need to look into the genetic testing" for the future.  We can't go back, and I'm not sure we made the wrong decision given all the information we had and our financial means.  In my sour moments, I ask what is the dollar cost of having this bogus pregnancy eat away 8 weeks of my fertility, the limbo weeks, the waiting to miscarry, the surgical removal, the emotional and physical pain.  It was, after all, free.  Insurance covered all of that.  I am surviving it.  I am not 100% broken.  But I don't want to do it again.  I also am not sure I can do it again.

We are down to two chances of IVF covered by insurance.  We believe in our hearts that the cause of the failure this time was embryo quality.  At 40 years old now, a lot of people seem to think that there is not much you can do aside from donor eggs to improve egg quality, and hence embryo quality.  However, through my experiences with my online support group, I have seen evidence of people improving their results with supplements and dietary changes.  The person mentioned above who had zero viable embryos after her first cycle ended up with all viable embryos in her second cycle after changing her diet and starting acupuncture.  Several others have had improvements with supplements.  And since I can only control me and my body, I am going to spend the next 90 days focusing on supercharging my body and my eggs to the best of my ability in order to maximize my chances for my second IVF fresh cycle.  I have found the book It Starts with the Egg by Rebecca Flett to be an invaluable resource in my planning.  She focuses on three fronts--minimizing toxins that damage eggs (BPA & Phthalates), maximizing supplements that will help with age related infertility and egg quality, and incorporating dietary changes that have been linked to better fertility outcomes.  I feel positive and empowered.  I have been eating well and exercising over the past two years, and I have noticed improvements with my hormonal levels over each year already, so I believe that changes can possibly influence the outcome.  The bottom line is nothing I am taking will be dangerous, and I need to feel I did everything I could do in my power as we close in on the last chances ahead.  And, although it is going to smart, we are going to figure out a way to have any new embryos, as well as possibly our three frozen, genetically tested.  We can only hope to have more embryos to test and that some of them test as normal.

It feels good to have a plan.

April 24, 2014

Done & Complete

Yesterday I had a D&C to end my pregnancy that had stopped growing a few weeks ago.  The chapter of IVF cycle #1 has come to an end, and I feel at peace with my decision.  I think I did the right thing.  The cramping and bleeding are minimal and manageable, and I feel a sense of relief no longer worrying what is going on inside me and when the pregnancy would start to miscarry on its own.  Every cramp or twinge for the past three weeks had me wondering "is this it?"  The procedure went very smoothly, and the luck of the draw gave me the same doctor I like who did my egg retrieval and embryo transfer.  She is very bright and seems super competent.  She also looks you in the eye and gives you leisurely time to ask questions, though I didn't really have any this time.  It was very surreal to be back in the same surgical suite as the egg retrieval for such a less joyous occasion, but compared to the surgical center where my previous D&C was two years ago, this one has several advantages.  For one thing, they let my husband stay with me right up until I walk next door for the procedure, and he is pulled back in right as I am waking back up.  It makes the whole thing less terrible to have him close except for my blackout period.  He was there when I started to cry a little after I was emptied of the pregnancy I so desperately wanted.  He was there to give me sips of water and get me the type of crackers I really wanted.  He was there to make sure they gave me a Vicodin before I left so I didn't have to feel anything and make it worse.  I also had an awesome nurse.  I so appreciated the whole experience being smooth and kind.  Oh, and I also got french toast on the way home.  Never underestimate the power of sugary syrup and carbs to lighten the emotional pain of the worst situation.

I can't say the same for the day before the D&C, which was Tuesday.  I called on Monday to tell my new nurse (yay--a change right in the middle of all of this) that I wanted to go ahead and schedule the D&C, possibly Friday when my husband could take off work.  This nurse is not as into email, which means annoying phone tag.  When I heard back from her, I got news that the D&C's are sort of low on the totem pole after all the egg retrievals, and some days they don't do them, depending on the schedule.  And of course you can't know until two days before once they have the trigger list, so she would put me on for Friday, but it could go until Monday or Tuesday if things were busy.  More limbo.  I asked her about who does the genetic testing of the fetus and insurance coverage.  She was not helpful and actually told me she'd have my RE call me to talk.  Huh?  He is going to talk to me about insurance info?  So Tuesday  morning, very early for me, my cell phone rings as I am just waking up in bed.  It is my RE.  He says he hears we want to do the D&C, and he doesn't know about Friday, but he knows they have time tomorrow, Wednesday.  So I take it, but the nurse will have to call me later with an actual time.  I ask about genetic testing, and he says they use Natera.  I ask about insurance, and his answer is "well, you never know with insurance."  No help. No suggestion of whom to talk to.  No let me have someone call you back who knows. No let me transfer your call.  This callous brush off is what I am used to with my corporate fertility clinic, and I feel the frustration flush over me right away from all the accumulated stresses of past interactions.  I want to say sarcastically, "Thanks for the keen insight.  Your support means the world to me."  BUT of course I always feel this hesitancy to even call them on their lack of help since I have to keep working with them in the future.  Then I feel rage that I can't express my justified feelings and have them resolved--mad at myself for not being more aggressive and mad at them for always putting me in these spots.  

Still, I resolve to try to get to the bottom of this on my own.  I call Natera directly and give my insurance.  They give me the billing codes they use and instruct me on what to ask my insurance.  I HATE calling my insurance people.  I usually get caught in a maze of recorded messages.  It is nearly impossible to get on the hold line to talk to someone live.  Somehow I do.  I actually get some answers.  It is 90% covered if deemed a "medical necessity."  Because we have reached our deductible, I think it will be 100% covered if they deem it a medical necessity.  Otherwise, it is experimental and no coverage.  (Natera said it costs about $3500 otherwise.)  How does one get it to be a medical necessity?  One's doctor must write a letter to accompany the test.  So basically I call back the nurse, leaving a message asking her about the time, the antibiotic prescription, and this letter issue.  I wait and wait, afraid to run my errands I need to run in case she calls and in case the prescription isn't called in.  I am trying to get a lot done in case I am down and out for a few days after the procedure.  My husband and I go back and forth about the risks of trying for the testing.  There is no way to know ahead of time whether the insurance will accept it as a medical necessity.  What if they don't?  Then we have to tangle with them.  I don't have the strength to go through a dispute.  I feel sick just thinking of it.  We feel like we are costing our insurance company a lot of money with our IVF, and possibly they will reject us and make us fight.  Maybe that sounds paranoid, but they are a-holes.  We debate back and forth about what the testing gets us vs. the risk.  We want to put that money toward PGS (pre genetic screening) of future embryos, which we are estimating will cost a little over $5000 for all the parts of that process.  We believe it is likely a genetic error due to my age and the fact that the yolk sac is big.  Still, I want to know.  We possibly have coverage.  I do think there is a case that it could be medically necessary--I am 40, this is my third miscarriage, we need to rule out other factors for future attempts, etc.  I am getting no response back from the nurse, so finally about 2:00 I head out to do my errands, and I hear from her as I walk into the first store.  No help on the letter or the genetic testing stuff.  She had talked to their financial counselor--I HATE HER--who is never any help.  The nurse suggests emailing my Dr. to ask about the letter.  As I reflect back on all of this, I can stay a little calm, but I was heading into a major meltdown when I hung up with her.  I felt so victimized and powerless.  They deal with the insurance companies 24/7 and have, literally, an army of insurance and financial people at the ready.  Payment a day late--you get a phone call!!  Prior authorization needed to do more procedures or tests--they are on it.  Need help with anything that doesn't make them money--good freaking luck.  I am really bitter.  I start bawling and mad texting my super busy husband at work.  I am so sick of getting jerked around with insurance stuff.  We always are put in these positions where we have to "roll the dice" and see what comes up, and it is super stressful, and I can't deal with it the day before I am going to get scraped clean!!  I have such a build up of stress and hate when dealing with these money and insurance issues that I cannot stay calm or cope very well.  Why can't my assigned financial counselor call and say, "We deal with this medical necessity thing all the time.  We are happy to write the letter.  I think you have a good case to be made.  Usually in these situations, 75% of the time there is no issue because the Dr's letter carries weight with the insurance, and they have a hard time disputing it."  OR SOME HELPFUL variation with correct information.  I flashback to dealing with the financial counselor when asking about buying medicines out of pocket.  THEY DEAL WITH THIS EVERY DAY.  Yet, she says, yes there is "some program" called "heart something" that I think some people use.  And you might want to google "discount pharmacies."  I am serious.  I am positive some previous IVF patient would have been happy to type up a handout outlining the pros and cons of different pharmacies and programs--I know I would have--so that they could give it to patients.  These shady bastards just don't care if it doesn't make them money.  Now I am officially ranting, but I hate how I can't scream at them, and so I am screaming at you.  Sorry about that, but my husband needs some time off from my rage.  The point is I just folded up my cards and emailed the doctor to cancel the genetic testing, mentioning the medical necessity issue.  I figured he could always step in and offer to write it or give me more info, but he just emails me back "got it. thanks."  I will never know for sure if there was a genetic issue, what it was, or if there was some other cause to the missed miscarriage.  I am going to assume it was genetic, and let it go, but it really was nice getting the exact info two years ago, and I would have liked to have it again this time, medically necessary or not.  I consider it maternally necessary.

Last night I took my Vicodin at 11:00, and tried to go to sleep by 11:40.  I literally lay awake in bed for four hours.  I could not fall asleep.  I am not sure why.  I have googled sleeplessness as a a side effect, only to see that it is not a side effect of the meds.  I was only unconscious in the procedure for about a half hour max.  I never napped when I got home, though I did lie around in a semi haze for a few hours on the couch resting.  I had to pee every 50 minutes or so during that four hours.  I would have just gotten up to go play on my phone or read, but my husband had a 6:30 wake up call for a work conference and he was sleeping peacefully beside me.  I knew if he awoke and I was gone, he would panic and come find me to make sure I wasn't bleeding or upset after the D&C, and he would never get back to bed or get enough sleep, so I just kept trying to sleep.  Four hours is too long to think about things when you have just lost your pregnancy, though I think I did okay coping considering.  I don't know if I have every had that happen to me in the past five years, and I am not sure why it happened, but tonight I will take a Tylenol PM for sure!

April 18, 2014

Limbo

After the big bomb fell at the 7 week 3 day ultrasound, I felt close to falling apart and was living minute to minute, just trying to stay numb and not think to protect the baby just in case this was some messed up mistake.  I decided that I wanted to talk to my actual RE the next day to try to wrap my mind around how I should be thinking about what was happening.  What WERE my odds?  I was so shell shocked and sad at the appointment that I was very ineffective in garnering information.  I sent him an email the day after, and I have to say I was surprised and pleased that he actually phoned me back directly.  It meant a lot to me, and it was not what I have come to expect as far as the level of care at our clinic.  He basically told me repeatedly, "it doesn't look good."  He told me point blank he expected a miscarriage and that there should be a good strong heartbeat by now, not to mention the growth being so behind.  Even though this conversation was not what I wished for or desired, I was very glad I had taken the step of making contact and knowing what he thought.  As he spoke, I realized that I already felt his words to be true myself as far as how I was interpreting the situation.

I kept trying to stay busy for the next three days until our next ultrasound.  I kept taking my hormones and treating myself as pregnant in the event something new would be discovered, but the appointment basically showed no growth at all.  I was much much calmer in the stirrups this time, having had the chance to prepare myself and have reasonable expectations.  The same PA did the scan, and she was pretty up front with us that this wasn't viable.  The more horrible thing was the heart was still "fluttering," which made us feel sick.  No growth, but clinging to life.  We just felt so torn about the situation.  We didn't want to be the ones to "end" things, even though there was not any hope.  They offered to perform a D&C even with the flutter, and I guess they usually won't perform one with a heartbeat, but they felt so certain things were impossible that they said it was up to us.  After a lot of discussion and soul searching, we decided to continue to wait and see.  We scheduled another scan for six days later.  I stopped taking my hormones and worrying about eating perfectly.  I didn't start boozing it up or dying my grays.  I know it makes very little sense, but I had this bizarre logic to my behavior in my own mind.

The most recent scan was yesterday, and nothing had really changed. My favorite person who does scans, the NP, was the one who we met with, and she was so awesome.  In the midst of all of this crappy stuff, having the clinic step up and be so compassionate and humane has made such a difference in my outlook and feelings.  I am overwhelmed by how kind and caring they have been.  She practically gave me a hug in the stirrups.  I don't know if she thought we were somehow hoping the baby would have grown or something, but you could tell she just felt so bad.  She gave us lots of good information and feedback.  Apparently she has seen in half of cases if a woman doesn't miscarry by now, she may not start to.  It gave me something to think about.  I have been so ambivalent about whether to let this play out or to take control and get a D&C.  I have had both experiences in the past, and I largely preferred not seeing the bleeding and clots.  I just worry that every time I go to the bathroom, I will look at my pad and start bawling.  

We tied things off to a certain extent yesterday at the scan.  We were both able to accept fully that this baby isn't the one.  It is fully three weeks behind where it should be.  Even though there is still a little flutter there (and I was hoping there wouldn't be anything), we know that it is sadly not viable.  It can't and won't recover in some miraculous way.  The yolk sac is larger than it should be, which may indicate a genetic problem.  That is what we are assuming must be the case.  

I have a lot going on emotionally and philosophically right now, and I plan to post some more on how I am coping with this all and what our future plans are.  I just wanted to give a quick update and say I am doing ok, all things considered.  Having this "spread out" the way it has been caused a weird psychological response on some level.  I continue to marvel at how much human beings can endure and how they manage to endure it.

April 8, 2014

That Old Familiar Feeling

Looking back I can't believe it has been three weeks since I updated things here. The time has not flown by at all. I had my second and third blood tests, and my levels increased in the normal range. The numbers were on the lower side of normal for successful pregnancies, but still within range. Over a week ago we went for the first ultrasound at the 6 weeks pregnant mark. I had told myself to keep low expectations on what they would see that early. Really they just want to see a normal gestational sac with a normal yolk sac inside it. Sometimes they can see the fetal pole (aka the microscopic baby) adjacent to the yolk sac. They could not conclusively see the fetal pole for our US, but they thought they might see a hint of it. The sac was measuring about three days behind, but we were reassured that a few days does not mean anything at such a small scale. If it is within a week, then it is fine. They confirmed one sac, so no multiples, which was a relief and a disappointment at the same time.

Still, I left that appointment last Friday feeling unsettled. The PA who did our ultrasound, usually one of my favorites over there, seemed ultra clinical and detached. I started revisiting her words and analyzing them. She made sure to tell me to come back if I had any bleeding. Was this because she worried things didn't look good?  I wished the ultrasound had not been quite so early so that we'd have a better reading on the fetal pole and more developed information. The worst part was having to wait ten whole days to see what was happening again.  

I have realized though my experiences with infertility and miscarriages that I have very little trust and faith in my body and its communication with me. All through this pregnancy I have felt very disconnected from my body's signs. Part of it is that my doctors took over my body's chemistry, manipulating it to produce multiple eggs. They "turned off" my body on a certain level and managed things medically. I have been taking progesterone and estrogen since they harvested the eggs back at egg retrieval, basically because my body wouldn't make the right amounts on its own after the IVF stimulation process. So, this whole time, even before they put back the embryos, I have felt pregnancy signs and symptoms of sore breasts, tiredness, and even uterine cramping.  Even since the positive pregnancy test, I have kept taking these hormones and feeling the same signs. Is it the baby or still just the hormones or both? I don't feel this idealized mother earth connection to my body and my baby and my uterus. I don't know what is me and what is what. I keep telling my husband I just don't feel pregnant. Honestly, even not pregnant, I often feel very hungry and tired. That's just me. Not having any dramatic morning sickness or something to reassure me has been stressful. Even as I tell myself that plenty of people have no signs and don't feel pregnant--don't even know they are pregnant--I can't help not believing it. As I said, I just don't trust myself, my judgments, my body. I don't feel pregnant, but I am.  I don't feel pregnant, but I have become a cynical person. I have had the experience of thinking I am pregnant and reassuring myself that I am, only to find out the baby inside me had stopped growing unbeknownst to me. Once that happens, it's hard to really reassure yourself.

The day before the next ultrasound, I woke up feeling less pregnant than ever. I had this great burst of energy and was getting stuff done. Was it because I had lain around all day doing absolutely nothing the day before? I DON'T KNOW ANYTHING ANYMORE. All I do is try to stay as calm as possible while my mind periodically races to bad places. My online support group helped me to keep it together, and I am forever grateful that I have found them during all of this. They make me feel like a normal person instead of an insane freak.

Yesterday morning, before the ultrasound, I did feel more pregnant.  I had felt slightly queasy after breakfast, and it was reassuring and something to cling to as I waited to head to the clinic. They kept us waiting for what felt like an eternity, though it was like 15 minutes in real time, I think.  When she puts in the ultrasound wand and starts measuring the sac, she seems quiet.  I try to stay calm, but she says after a long look, "I have a concern." So, yes, I just start instantly crying. I couldn't help it. I didn't want to hear "we don't see the baby."  All the fear just bubbled up in that moment. She could find the fetal pole, but it was measuring over a week behind what it should be. She was able to confirm a fluttering heartbeat. It was the same PA as last time, and again, I felt she was oddly clinical and detached, not really giving us any true information other than as of that moment it was viable, but it was behind. Later, my husband and I both told each other that we had thought of asking her for some statistics on this thing, but neither of us did. Why? Maybe I just panicked and thought she'd say something I wasn't emotionally equipped to hear. Maybe my husband knew I couldn't hear anything worse in that exact moment.

So here we are in limbo yet again. Internet searches do reveal plenty of miracle babies who weren't measuring appropriately and later kicked into gear, so there is hope. We don't know how much hope to hold out. I have to treat myself like I am still pregnant (which I am) and like this baby is still viable (which who knows).  I am having to stay as detached as possible in thinking about this or I just start to lose it. Our odds were like 70-75% yesterday morning going into this ultrasound that we would get a baby out of this, but today, they are not close to that anymore. Whether they are 50%, 20%, 5%, or 1%, I honestly do not know. We go back on Friday to see what's happening. I am trying not to think about "next steps" and "what ifs" because, frankly, I am not strong enough to do that without freaking out. I am hoping for a miracle baby, but the thing is, I find that I don't believe in miracles like that anymore. I'd sure love to be wrong.