did I catch a niner in there?

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Do you believe in signs? I do.

  This is a picture of The Solow Building located at 9 west 57th Street in Manhattan. I usually pass this building in a cab on the way to my RE’s office as well as my acupuncturist office which are both located on 57th street. The other day I was heading to acupuncture and the traffic was horrendous so I hopped off the bus and started walking. Those of you who know NYC know sometimes walking is just faster. Along the way I passed 4 middle aged women trying to take a selfie in front of this 9. They were laughing and joking that they all couldn’t fit in the picture. Instead of just walking past I stopped and asked if they wanted me to take it and I was greeted with a roar of “YES’s”. I laughed along with them snapped a few pictures and kept on my way. It made me feel good to take the picture for them, to help make that memory. I’ve seen/walked past the 9 before and never thought twice about it. Later, I thought about the 9, wondered why they wanted to take that picture and why there was a huge 9 outside of a building but,  never looked it up.

We just got the call that 9 made it to biopsy!!! Is it a random coincidence? You decide, I already have.

Our RE isn’t a talker and their office isn’t the most informative so I only have a little info to share. He said that 9 were biopsied, 7 on day 5 and 2 on day 6. They are BC and BD grade however they use their own grading system for embryos so we don’t really know what that means. I mean the waiting for the call and then the lack on info we get from the call is enough to kill me BUT we got 9! And now we’re hoping for lots of normals

So now we wait… 7-10 days.

xo

Money Talks

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Everyone has their own IVF stories and struggles to share. I asked Mike to write the following (he is amazing and handles the insurance) after we received a few emails from couples who either are or may soon be undergoing PGD/PGS asking about our experience with PGD and insurance as well as the additional emotional and financial stress that it adds to an IVF cycle.


For now, I’ll try to elaborate on our experience regarding the added cost of PGD and how we figured out what it would be.  Please note, while we will be specific with regards to actual numbers, the name of our insurer and the PGD lab shall remain anonymous.

Firstly, IVF-ers should check this site out to see what your state’s insurance coverage is. We recognize how fortunate we are that we live in a state where the cost of IVF including medications is covered, and we sympathize with all those having to deal with the enormous financial burden with minimal or no reimbursement. You should note this is a realization we came to in the middle of our first cycle while seeing others go through the process and pay out of pocket. That being said, we did not realize how truly complex our case would become because PGD was added to the equation. Hopefully explaining our specific case will help others who are in the same boat.

Where to start? That question was really overwhelming and our RE’s office and insurance company were not really helpful in determining what we should do first. I mean NO HELP whatsoever.

The first obstacle was to determine whether or not PGD was covered at all. Though this may seem like a simple question, that could not be further from the truth. After speaking with various customer service representatives from our insurance provider over the course of a few weeks, explaining to each what exactly PGD is… let’s stop there for a second. PGD is so rare and complex that even some of the doctors and nurses at our RE’s office do not feel qualified to discuss it with us. So not only are we infertile but now no one will talk to us about our specific very rare problem. Anyway…after hours, literally hours on the phone it was finally determined that PGD is included in our plan. Terrific news right?!?! Nope… Prepare for a crash course on the true meaning of in-network versus out-of-network.

In-network

In-network is easy. If your RE is in-network, then your insurance company has already contracted a price for any given service from that provider, and they will in turn pay some percentage of that price. In our case, our insurer pays 100% for in-network services.

Out of network

Out of network becomes somewhat more confusing. Reimbursement for out of network service is usually less. In our case, the insurance company “reimburses at a rate of 80% minus our deductible ($500/year).” Okay, but 80% of what? 80% of the total cost of PGD? 80% of what they feel like paying? 80% of a chocolate chip cookie? Turns out this is a very important question.  Again, after hours on the phone, I was told what they will actually pay is 80% of the “usual and customary rate” that they pay for that given procedure. So for example, if you get an x-ray from an out of network provider that costs you $100, but your insurer’s usual and customary rate for x-rays is only $50, then you get reimbursed $40, not $80. And this is of course assuming you’ve already fulfilled your annual deductible.

Here is where it gets really confusing. Turns out that:

  1. there is only one IVF clinic in our area that is in network.
  2. they only use one specific lab for PGD.
  3. that lab is out of network AND furthermore does not accept insurance at all.

Each one gets better than the next, and by better I mean worse and more annoying.  After relaying this information back to our insurance company we were introduced to the concept of “in-for-out.”

In-for-out

This phrase is confusing in itself and figuring out what this actually meant took a few more hours on the phone. Basically, “if a procedure is deemed medically necessary, and there are no in-network providers available then they reimburse as if the provider was in-network.” Based on us being infertile and our both being carriers of CF, IVF with PGD was deemed medically necessary. So we applied for in-for-out and our case was accepted. But remember, this means that they will reimburse 100% of their “usual and customary rate.” Enter CPT codes.

Current Procedural Terminology (CPT) codes are numerical codes assigned to all medical, surgical, and diagnostic services and are used amongst other things to help regulate costs. For our PGD, there are three CPT codes involved:

CPT Code Amount We Paid   (before retrieval) Amount Reimbursed  (eventually)
Probe Creation (81403) $4000 $728.04
Chromosome Testing (81228) $2250 $1690.04
CF Mutation (81479) $3000 ?????
Total $9250 $2418.08+

 

The question marks are particularly curious. When they cut the first check (which as a comical aside was mistakenly mailed to our PGD lab instead of us) the reimbursement for that code was a whopping 4 cents. Pay $3000 get 4 cents back…makes sense. After pointing this out, they assured me this was a mistake, and that they would correct it after reviewing our case again. So after numerous additional phone calls, they still don’t have a number for that code, but they’re “working on it.”

We’re hoping for a least a nickel.

So ultimately, given the rarity and complexity of PGD, although it is covered by our insurer at an in-network rate, we had to front the full cost (with help from our family) of $9250, and have so far been reimbursed 26% of that cost. Oh…and that’s just for the first cycle…

 

Retrieval is tomorrow!

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Tomorrow at 8am is our retrieval…ahhhh.

What is a retrieval you ask? I’ll be put under a local anesthetic and then a thin needle is inserted through the vaginal wall under ultrasound guidance to aspirate the follicles and retrieve the eggs.  The eggs are removed from the follicles through a needle connected to a suction device. Next Mike’s “specimen” will be combined with my eggs to make embryos. Once the embryos are fertilized they will then grow for 5 days at which point a biopsy will be taken and the embryos will be frozen.

We will find out 1 important thing tomorrow:

  1. How many follicles were retrieved. This gives us an idea of what we are working with. IVF-ers want a large number but not too large. I want 21. If too many are retrieved that usually means they aren’t mature or won’t fertilize.

Saturday we find out 2 important things:

  1. How many follicles contained mature eggs.
  2. How many fertilized. I want 16.

The important thing to realize during IVF with PGD is that ultimately our embryos need to be tested. We need a large number to be fertilized and grow to day 5 so that they can test a bunch of embryos.

Ask, believe, receive.

xo

 

Day 8 update

Day 8 Update
Right Ovary: 11, 16.5, 17.5, 17, 12.5, 12, 12, 11, and 3 less than 10.
Left Ovary: 14.5, 10.5, 14.5, 10.5, 14, 10, 13.5, 15, 14.5, 13, 11.5, 10, and multiple less than 10.
How many days in: 20
Shots given and amount: Lupron 5IU (first) Gonal-F 112.5IU (second)  Menopur 75IU (last)
Shot time: (will be) 9:15
Side effects: Really tired and MAJOR bloating
Queasy or sick: No
Black and blue: a little
Not looking forward to: taking shots tonight…
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Looking forward to: Retrieval will be either Friday, Saturday or Sunday!
xo

The Truth about Trying and Telling

How do you tell your parents and friends that you’re infertile, carriers of the same genetic disease and that you’re going through IVF? The answer: you don’t…at first.

Infertility in itself is difficult to deal with and adding IVF with Preimplantation Genetic Diagnosis (PGD) to that makes it even more emotionally and financially stressful. Telling our family and friends was at first not an option. Early on in the process it was explained to us that in order to do PGD testing, to test our embryos for CF, we would need to have our families tested. My mom and my sister had been in the loop every step of the way and were not only understanding but wanted to help in any way they could. We didn’t want to burden Mike’s family with this stress and hadn’t told them anything about our trying to conceive. They don’t live close to us and I was adamant on telling them in person so we drove 4 hours to see them and tell them.  This was the first emotional conversation we had to have outside of each other and it was tough.

It’s not quite like “Oh hey, did you guys see the Sox game last night? BTW, did we mention we are infertile and need you to pay a few hundred dollars to spit into a cup so we can determine which one of you passed this along to us?  K, thanks.”

Fortunately they were extremely understanding and willing to do whatever we needed them to. What we were asking of them could have gone against their morals or beliefs. Asking someone to do testing to reveal who is a carrier of a genetic disease isn’t the easiest question and we realized they had the right to say they didn’t want to be tested.  Mike and I feel so blessed that both of our families are incredibly supportive in so many ways and we wouldn’t have been able to get through this without them.

We had been going to doctors for a few months and felt that letting our friends “in” on the secret wasn’t necessary. We thought we would do one cycle and get pregnant. No one would have to know. There is en element of shame when dealing with the reality that you can’t naturally make a baby. This is the next step in life and we can’t take it. Along with the shame comes the added stress of thinking that people will pity you or treat you differently once they know. Most of our close friends have babies or were pregnant and we didn’t want them to feel bad for us or act differently around us. We are and will always be happy for everyone who is able to conceive regardless of what our parental status is.  That being said of course it’s difficult to see our friends starting their families, but we know we will get there.

I told a few close girl friends. Some who I knew would be there for me and some who have gone through their own issues with infertility. We started this blog privately and invited the few people who knew to view it to stay updated through the medication process and doctors appointments. When the first cycle ended we were happy we hadn’t told many people. Family and friends read the blog and knew what the outcome was and were supportive in their own ways.  The decision to do another cycle came with a lot of new emotions, the main one being “f*#k it”.  We had a small following on Instagram and talking to people who were going through the same process was so cathartic. Our friends on Instagram and their experiences really pushed us to do another cycle so we made our blog public. If it helps one couple while they are going through IVF then it’s worth people knowing.

We decided to tell friends as situations presented themselves. For example, we aren’t drinking alcohol during this cycle and at first we were avoiding social situations where alcohol was present. Um HELLO! It’s summer and who wants to be anti-social and stay inside all summer? Not this chick. So we started telling our friends in small groups while hanging out. Everyone was obviously supportive and understanding and I’m happy to report there was no peer pressure. 🙂 This is all very new to us and I’m sure a time will come when we regret telling people but C’est la vie.

1 in 8 couples (or 12% of married women) have trouble getting pregnant or sustaining a pregnancy. Infertility is a disease of the reproductive system and is more common than I could have ever imagined. So many couples struggle with the idea of starting a family and I hope you will Resolve to Know More.

xo

 

 

Day 6 stims update round 2.

 Our first check in appointment, day 6 of stims, went well!

Left 11 Follies Measuring – 11, 11, 11, 10, the last 7 are measuring less than 10

Right 8 Follies Measuring- 12, 11, 10, the last 5 are measuring less than 10

We are happy with these numbers because as you can see below, we have more follicles than we did at this time last cycle.

Day 6 of stims last cycle:

Left 6 Follies Measuring – 10.5, 10, 10, 10, 10, 10

Right 8 Follies Measuring- 13.2, 10.5, 11, 10, 11.5, 11, 11, 12

Obviously this is no guarantee that this round will go better than last, however it is encouraging that the increase in medication seems to be working. Some may say it’s in my head but I feel that acupuncture is really helping. Acupuncture has been used for centuries in Chinese culture and  is a  similar to physical therapy in that it is a process-oriented method of medical intervention. Acupuncture is used to increase blood flow to specific areas and I have been getting it for back pain as well as infertility. Historically, it has been likened to tilling the soil before planting the seed.  Makes sense right?  I have noticed a significant decrease in pain in my back so I can only assume it is doing good things for my uterus. It also allows for some quiet time to relax in a dark room and focus on what is presently going on in my life. This process is overwhelming and and although our life is run by shots and Dr. appointments it’s east to let the severity of the situation sit on a back burner. It’s nice to have a set time to pamper myself during the week to reflect on the process and what we are going through.

How many days in: 18
Shots given and amount: Lupron 5IU (first) Gonal-F 112.5IU (second)  Menopur 75IU (last)
Shot time: 9:15
Side effects: Really tired and a headache or two today
Queasy or sick: No
Black and blue: Yes, both sides
Not looking forward to: …nothing 🙂
Looking forward to: Heading out of the city tomorrow to relax with my mom and Keiks.

Adventures in Baking:

I’m not the best baker and I need to get it under control; so I’m starting small with boxed cookies.
Here is what was for dessert tonight…
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I loved them but I think they were a little too out of the box for Mike. 😉
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Climate changes and caffine cravings

Today is day 5 of our stims (17 days total on meds this round) and we have our first check-in appointment tomorrow am!  Mike is moonlighting and historically I can not sleep when he works nights. When I say “can not sleep”,  I mean pop a Benadryl and still toss and turn all night type of CAN NOT SLEEP. It’s 11:15 and I’m usually passed out by 9:30 so it’s looking like I won’t sleep tonight. I’m gonna go ahead and assume Benadryl is a no no while IVF-ing.

So…hi. 🙂

It’s been a while since I’ve updated everyone. Let’s see, I started taking 20IU of Lupron on June 25th which gave me headaches, insomnia and hot flashes so I now know what menopause will feel like. Good times. We decided to give up caffeine this cycle which contributed to the headaches and also proved how addicted I was.

Confession: : I may or may not have stood outside of a Starbucks today just to smell the coffee. Sick, I know.

My name is Lex and I was am was addicted to coffee.

FYI my husband is a saint for dealing with me and my moods through all of the above.

U P D A T E…
How many days in: 17
Shots given and amount: Lupron 5IU (first) Gonal-F 112.5IU (second)  Menopur 75IU (last)
Shot time: 9:10
Side effects: Hot flashes, red belly
Queasy or sick: No.
Black and blue: Yes, both sides
Not looking forward to: Trying to sleep.
Looking forward to: Our appointment tomorrow and seeing how the follicles are responding to meds.
I’ll leave you with something I have been telling myself a lot this past couple of weeks.
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