Always Room for Improvement

Right off the bat, I should say that I know no person is perfect, and no IF clinic is perfect either. Perfection should never be the expectation. However, in any profession, if you aren’t reflecting and trying to improve or do better, that could be a problem. Experience only makes you wiser if you learn from it and apply it to future situations. I know this from being a teacher the past 5 years.

This being said, we have made a list of things we think could be improved upon at our current clinic, or any clinic for that matter.  Here is what we have so far:

  1. The most advanced uterine tests should be performed on all patients before IVF. This means a Hysteroscopy should be done on every patient prior to IVF.  You heard me right.  That is our opinion after the hell we have gone through. We are proof in the pudding that an SIS and HSG aren’t always enough.  If we had done this procedure from the start, there would be no questions in our minds or our RE’s if that fibroid had truly been around for all 3 losses or not.  
  2. PGD should be offered to all patients before they begin IVF.  Looking back, we were never informed of this option & I wish we had been. We cannot do PGD testing now with our remaining frozen embryos, as it can only be done in the days following the retrieval.  We never knew about this option until we miscarried and started searching the web. Suddenly, we started seeing all of these women who did PGD before transferring.  I mentioned it to my doctor at that point, and found out it was too late to genetically test our embryos.  Since we looked good on paper (under 35, appropriate weight, etc), perhaps it was assumed we would succeed & not need this expensive option added on. If we were to miscarry again, I do not know if I could go through another transfer. Instead we have discussed a surrogate. How much more confident we would feel knowing we were transferring a genetically normal embryo into a surrogate than not! While I get that PGD is not 100% accurate, it should be offered to the patients if it is a service the clinic provides.
  3. RE’s should discuss the worst case scenarios upfront with their patients before they begin IVF.  When we began IVF, we were so set on it actually “working” that we didn’t think of anything before that point or after that point. We didn’t discuss that only embryos making it to day 5 or 6 would be kept.  We never talked about the chances of chemical pregnancies, miscarriage, or RPL.  We had no idea we would go through the torture of beta testing and what would need to happen with all that if we ended up pregnant.
  4. The RN’s should not do all of the ultrasound monitoring during an IVF cycle.  This is probably common at most clinics simply due to the amount of patients undergoing treatment.  It was never an issue to us before we miscarried either as we do trust our RN.  However, our nurse ended up missing something early on in one of our cycles that our RE probably wouldn’t have if she had been the one doing the ultrasounds to begin with. Moving forward, we have told our RE we will not be monitored by anyone other than her and she has agreed this is best.  If our RE would like to have the nurse with her for another set of eyes, great! Bottom line…I want the person who will be transferring those embryos into my uterus monitoring it before hand. No exceptions.
  5. All viable embryos should be considered for transfer.  At our clinic, only embryos that make it to day 5 or 6 are transferred.  On the day of the retrieval you are handed a piece of paper that says “be here on day 6 at _____ am for embryo transfer.”  I know several women who have had successful day 3 or 4 transfers, so I do not think it is fair to limit to just a day 5 or 6 transfer. Thankfully, our 8 embryos made it to day 6, but what if they hadn’t?
  6. After retrieval, the embryologist should provide daily updates on how the embryos are doing.  I never once talked to the embryologist for an update. I received a voicemail the day after retrieval with a brief summary, but that was it. Those days after the retrieval are sooo stressful as it is, and remember we had to wait until day 6 not knowing anything. In my opinion, not knowing anything until you show up for the transfer is adding a lot of unnecessary stress to the situation.
  7. Get input from the patient about their IVF treatment plan.  Sit down and show patients all of the different “protocols” available for an IVF cycle. Short, mini-stim, antagonist, un-medicated, etc. Tell them the success rates with each. Explain what type of patients you have seen do well on each type of protocol.  Understand that this should not be a “one-size-fits-all” approach.  Ask them questions about their bodies, and act like they are educated. Through this process, I have learned that I know my body better than anyone. Just because Susie did well off all of the drugs you gave her, doesn’t mean I will. Show me what is available, whether it is your preferred method of treatment or not.
  8. Clinics should disclose what will happen if you do get a positive beta post IVF.  We never talked about the cost to continue a pregnancy if we achieved one.  We had no clue we would be spending thousands more on medications after the actual IVF cycle itself ended.  Medications are only paid for up until the beta test in case you get a negative.  If you get a positive, you will need meds for 6 more weeks, at least.  That adds up to thousands more.
  9. Designate clear roles within the practice.  Since it is so easy to communicate with everyone at the practice (listed as a perk yesterday!), you never know exactly who to talk to about things. For example, we have had prescriptions not called in, called in twice by different staff members, etc. It would be great if each person had a clearly designated role or each patient had a clearly designated go to person.
  10. Wellness services should be provided at clinics. Everyone goes into treatment hoping it will work the first time.  But, that is not always the case.  Actually, majority of the time it is not the case.  After all of the emotional and physical trauma, we wished that our clinic offered things like acupuncture, counseling, etc.  Don’t get me wrong, when asked, they provide recommendations, but we have ended up finding our own specialists in these areas.  It would be great if clinics started including these in their treatment packages.

Hind sight is always 20/20. But we hope this list is helpful to those searching for a clinic to call home!

IVF #1-Stim, Retrieval, Transfer, & the 2WW (all you ever needed, or wanted to know)

As promised, this post details our first IVF from the “stim” start to the pregnancy test.

Our goal is to share our experiences to those who are thinking of doing IVF, getting ready to do IVF, or have a friend or family member going through IVF.

Although every individual’s journey is different, we hope that this can provide you with some general insight on what to expect.  When we began IVF, we had a lot of these questions ourselves.

ivf

How often I went to the doctor for monitoring

Since we knew I would be going to the fertility practice a lot once our “stim” began (before egg retrieval, when you are pumping up your body to produce a zillion follicles that will hopefully produce nice, mature eggs), we arranged to start it over my Spring Break (teacher perk) so I didn’t miss work.  And if I felt lousy, I could relax at home.

Our stim was 10 days total.  Here are the days I went in for blood & an ultrasound, with my estradiol (fancy for estrogen) levels and follicle amounts (future eggs):

  • Stim Day 1-estradiol level 18
  • Stim Day 4-estradiol level 211; 16 follicles
  • Stim Day 6-estradiol level 744: 18 follicles
  • Stim Day 8-estradiol level 1556: 20 follicles
  • Stim Day 10 (trigger day!)-estradiol level 2619; 22 follicles

NOTE: It is important monitor the estrogen levels frequently because if they get too high, you can hyper-stimulate.  My doctor never wanted to see these levels rise much above the 3000 mark before retrieval to prevent hyperstim.  Many doctors will cancel the cycle before the trigger shot/retrieval if the levels are too high (we knew someone personally this happened to).

The doctor told us that our stim was textbook perfect! We were soooo happy since this was one of our worries. My body was reacting fine to the meds and we were moving on to the retrieval on day 12.

IVFbloodwork

The medications I was prescribed during “stim”

  • Follistim– 150 units once daily into stomach, rotating sides.  Easy injection, must be refrigerated.  Tip: Take it out of the fridge about 15 minutes before so the liquid isn’t so cold when injecting! Be sure to do this injection at the same time each day.
  • Menopur-75 units once daily into stomach, rotating sides.  This one stings a little & is a pain in the you know what because it doesn’t come ready.  You have to mix it! Unreal for the amount of money you are paying right?! I think a nurse should come with the meds for the cost. LOL.  We messed up the mixing once and I cried (those tears we talked about in prior post).  Thankfully, if you mess up, there will be (a little) extra of the meds, so don’t worry too much.
  • Pregnyl “Trigger” shot-this injection is done only 1 time which is 36 hours before the egg retrieval.  For me, it was on day 10 of my stim.  It is different for every woman based on how follicles are maturing when the ultrasounds are done.  I won’t lie, this shot royally sucks.  It is an intramuscular injection, unlike the Follistim  & Menopur which are subcutaneous injections (right beneath the skin).  They tell you to have your husband do this injection because it needs to be in the a*** in a specific spot. Initially, I thought I would have him do my injections for me.  When it came down to it, I would grab the needle from him.  Don’t ask me why, but I was more scared to have him do it than do it myself.  So, needless to say, I injected the Pregnyl & it hurt!
  • Prenatal vitamin/Folic acid/Baby aspirin 1x per day
  • Doxycycline- antibiotic to start the night before the egg retrieval and 2 days following

The medications I was prescribed after the retrieval until the day of the pregnancy test (if pregnant, continue Estrace, Crinone, Prenatals, Folic Acid, & Baby Aspirin until out of 1st trimester!)

  • Medrol-oral 4x per day, for 4 days after retrieval
  • Estrace-oral or vaginal pill 2x per day, this is estrogen
  • Crinone-vaginal suppository 2x per day (Yucky!), this is progesterone
  • Prenatal vitamin/Folic acid/Baby aspirin 1x per day

ivffollistiminjection

The Retrieval 

It was finally the end of March (remember we started birth control in February).  We couldn’t believe we made it to this day! This is a big step for an infertile. With IVF, you have to remember that anything can go wrong at any given time. So we were elated nothing had gone wrong…yet.

I remember feeling so ready to get those eggs out of me by the time the morning of the retrieval rolled around. I literally felt like a goose ready to lay a bunch of eggs LOL.  Totally bloated. Surprisingly, I wasn’t that nervous, just a little thirsty since I hadn’t eaten or drank since the night before.

When we arrived, my husband was taken to the “man room” to do the most important count ever.  I could tell he was pretty nervous.  Maybe that is why I wasn’t.  I knew if I was, it would make it worse for him, especially since he is usually so calm.  Turns out, all went well with Shane’s count; it was the highest it had ever been. Still low, but definitely an improvement.

He couldn’t be in the room during the retrieval, just the doctor, RN, & anesthesiologist. Once I was prepped and in the surgery room, the doctor showed me a tiny window pass through where the embryologist (and the sperm) wait for the eggs to be handed off to her immediately after they are retrieved. We elected to do ICSI along with IVF (where the embryologist chooses the bests sperm and injects them into the eggs).

I chose to be under general anesthesia for my egg retrieval rather than localized, or twilight anesthesia.  General anesthesia costs more, but it was worth it to me. When speaking with fellow IVF’ers, many told me the retrieval was the worst part of the process. Maybe.  When I woke up from the retrieval, we were informed that everything went perfect again! Another BIG step. We had heard horror stories of no eggs being retrieved and were scared to death it might happen to us.  We had 19 eggs retrieved.  Woohoo!!  The doctor seemed really happy & told us we would hear from the embryologist the following day.

#ICSI

The Days Following the Retrieval

Now we were biting our nails on whether or not any of these eggs and sperm would actually form embryos.  Remember, I told you it’s 1 worry at a time while you are breathing, sleeping, and eating IVF.

The embryologist called us the next day and told us that overnight:

  • 18 eggs were inseminated via ICSI
  • Of the 19, 13 fertilized normally with Shane’s sperm, forming embryos

More fantastic news! The embryologist would continue to be in touch with us over the next few days so we knew when we would be transferring.  In IVF, supposedly the longer the embryo grows, the better.  Why? It is like survival of the fittest.  The best embryos make it and the others usually don’t.

This made me laugh!!
This made me laugh!!

Day 3 after the retrieval we learned that:

  • 5 of the 13 embryos were no longer viable
  • 8 of these embryos were still viable and growing 🙂

Again, we were very pleased with the news.  However, the next few days I began to be a nervous wreck.  What if all of the remaining embryos die off like the 5 others did???  I was reassured it wouldn’t happen.  No one can assure you of anything during IVF.

Day 5 following the transfer we were informed that:

  • Our 8 embryos were still viable!  Thank God.
  • The embryos were graded as follows:
    • 3 embryos were 6AA (best grade you can get…hooray!!!)
    • 2 embryos were 6AB (second best)
    • 3 embryos were 6BC (not the best)
  • TRANSFER DAY WAS SET FOR TOMORROW!!
We made it to day 6!!
We made it to day 6!!

The Transfer

We welcomed the month of April 2014.  This is was the day/month we had been waiting for for years! Our transfer was 6 days post retrieval, the latest a transfer can be done before the embryos must be frozen. Many people have transfers as early as 2 or 3 days after their retrieval, depending on how well the embryos are doing.  Since this was our first IVF, and our embryos were graded great, we decided to transfer only one 6AA embryo.

The actual transfer itself is a piece of cake compared to the rest of what has been going on (it only takes about 5 minutes).  You get there about 30 minutes prior and they prep you.  You need to have a full bladder for the transfer so the uterine cavity is able to be clearly seen on ultrasound. This was hard for me because I have a really small bladder to begin with!  If you are in the same boat as me, you can ask them to fill your bladder for you (I learned this on IVF #2) right before they transfer the embryo.  This way you don’t even worry about drinking & miserably holding it.  After the transfer, they will drain it for you while you rest.  Ahhhhh.

Good news-this time hubbie gets to be in the room with you, and you are awake!! He sat by me & held my hand the whole time.  We were in the same room as for our retrieval so the embryologist can access the room with the embryo when the doctor is ready.  The embryologist actually comes in with a picture of the embryo before the transfer and discusses it with you. Again, all was going very well.  I was starting to think maybe this wasn’t too bad after all!

Then the RN begins by doing an abdominal ultrasound to make sure the bladder is full & the uterine cavity is clear.  If this looks good, the doctor cleans out the cervix since you have been sticking that gooey Crinone (progesterone) up there for a week now! Ughh. My doctor always plays music during transfers. Hey, whatever floats your boat I guess.  The lights are dimmed so it is actually more of a relaxing atmosphere than you would think.

AbdominalUltrasound

She then inserts a catheter (painless) into the uterus, and what’s nice is that you are seeing all of this take place on the ultrasound screen right next to you.  After the doctor makes sure the catheter is in the right place, she calls for the embryologist to bring the embryo in.  It feels like an eternity for this to happen.  Literally.  The embryologist brings the embryo in a catheter that fits into the doctors catheter.  You are praying that they both have very steady hands.  You start thinking what if they drop the catheter? What if they insert it in the wrong place?  Dear God.

The doctor releases the embryo and you actually see what appears to be a little white dot on the screen in your uterus! Super cool.  It could be your future baby!  After the embryo is in the uterus, you rest there for about 30 minutes. I make my hubs tell me jokes so I can laugh.  It’s good for the soul right?

Before we left, the doctor explained that everything went perfectly with the transfer.  Another step in the process accomplished.  We set the date of the blood test to see if we were pregnant for exactly 10 days later.  Yes, this my friends is what is called the excruciating 2 WEEK WAIT (even though it’s not really 2 weeks, it feels like 4, so it’s earned its name for sure).

#IVF, transfer

The 2WW

The next 48 hours are strict bed rest (missing more work for sure).  A lot of doctors aren’t big on bed rest, but mine happens to be.  If yours is too, make sure you have some movies, books, and good food of course.  We watched Frozen and I started reading Wild.  My hubs made sure I was off my feet and pampered me.  It was nice.

transfer

Then the new phase of worrying began.  I can’t lie, the next 8 days were difficult mentally.  Anyone who has been through IUI or IVF knows this. We both went back to work and tried to keep our mind off it.  Thankfully, I had state testing going on at school so that kept me somewhat focused.  But the thought of what if it didn’t work kept creeping into my mind.  It’s pretty consuming.

Day 6 post transfer we decided to go out to dinner with our family.  It was a Friday night, and my aunt & uncle were in town.  I remember sitting across the table from my mom and I could smell her wine.  A little later, my hubs came back from the bathroom and I could smell the soap on his hands.  I felt off.  That’s when I knew it had actually worked.  I was pregnant; for now.

#pregnancytest