mortonsminutes

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:

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…

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

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

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

Adventures in Baking:

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.

So this happened tonight…

This is the start of IVF with PGD round 2.

The next cycle timeline looks like this:

June 23rd- July 7th (about 14 days) Aygestin pill which I will take for two days and then start my Lupron shots.

July 7th- July 15th- ish- Stim injections and Lupron for 10-12 days

July 16th (give or take a couple of days)- HCG trigger shot

35 hours later- Egg Retrieval

July 23rd (ish) 5 day biopsy

July 29th-30th (ish)– POSITIVE …Results of biopsy

We are trying to think positively and feel good about this next cycle. I am a little nervous about taking medication for two extra weeks this cycle and I’ve heard from the nurses and my fellow ttcsisters (try to conceive sisters) that Lupron causes migraines. I love a good headache so I’m really looking forward to those if they decide to show up.

In other news, I’ve given up coffee completely for this cycle and those of you who know my Starbucks obsession know I must mean business this cycle. This was tonight’s dessert.

Green Apple/Spinach Smoothy:

• 1 cup spinach (2 giant handfuls works)
• 6 frozen coconut water ice cubes
• 1 granny smith apple (chopped)
• hand full of mint
• handful of Flax Seeds

Blend together, add more coconut water if it’s too thick and add to cup.

“We cannot change the cards we are dealt, just how we play the hand.” – Randy Pausch

Have you ever heard of Randy Pausch? Randy was a  computer science professor at Carnegie Mellon University.  Each year the University would host a series of lectures called “The Last Lecture”. The idea was if you had one last lecture to give before you die what would it be about? Over time they changed the title of the lectures however the year Professor Pausch gave his lecture it was indeed one of his last lectures. He had been diagnosed with terminal cancer, had one month left to live and was about to give a room full of colleagues and students the best lecture I have ever heard.  If you want to see the lecture it’s here. If you want to see the shorter version from Oprah I actually saw first then go here.

This lecture changed my life.  It may be the fact that he was a Disney Imagineer or it might be that speaks about actually living your life. Either way remembering the lessons that he spoke about makes me appreciate and enjoy whatever the hand is that has been dealt to me. SO that’s exactly what I’ve been doing.

Uncle Mike playing with baby K in park.

The view above.

A  Memorial Day walk.

A wedding in Greenwich…the bride, that dress! Amazing.

 Road trip: #getmeoutofNYC

BBQing at Newfound Lake in NH.

Selfie on our way to the lake!

Irish legs.

A glass of wine on the deck. We’re trying not to drink during our cycles so we treated ourselves.

Looking relaxed.

Back to reality, dinner in Park Slope Brooklyn before the Jack Johnson concert.

View from our blanket at the Jack Johnson concert in Prospect Park.

The Cornell Surgery Residents Graduation. 4 years down and 3 to go, so proud of him.

So, with all that said we’re looking forward to starting our next cycle. This Friday we are meeting with our old RE (who we love but can’t use because she doesn’t accept our insurance) to get her input on our last cycle and get any advice she can give about the next cycle. We most likely will be starting next week and we’ll meet with our current RE before to discuss a couple of changes to the regimen with the hopes of getting a few more follicles.  We do know that this cycle will be a Lupron cycle which basically means plenty more shots for a longer period of time.

Medication for one person…to make one person.

Zero…

That’s how many embryos we have to transfer. BFZ! In the infertility world we use acronyms to describe things happening in our infertile lives. For example DH is darling husband, AF is Aunt Flow (you can probably figure out what that means), BF stands for big fat and is usually followed by positive (BFP) or negative (BFN) when speaking about results of a pregnancy test. However, we received the devastating news that we have ZERO embryos to transfer so I have cleverly created the acronym BFZ. BIG FAT ZERO!

Here are the results we have so far: (embryos are numbered after fertilization)

Embryo #1: Affected with cystic fibrosis, chromosomes normal.

Embryo #6: Cystic fibrosis carrier, trisomy 2.

Embryo #10: Cystic fibrosis carrier, trisomy 3.

Embryo #11: Affected by cystic fibrosis, chromosomes inconclusive (poor DNA/ “chaotic”)

The above four are conclusively a no go for transfer.  But the fun doesn’t end there.  While the next two have results that are less definitive, nonetheless, still nothing suitable for a uterine test drive.

Embryo # 2: Incomplete result but no cystic fibrosis mutations conclusively detected, chromosomes “chaotic”.

Embryo #5: Negative for delta F508 mutation (one of our cf genes). Chromosomes “chaotic”.

Another fun infertility word I’ve learned is “chaotic” and I’m still confused as to what they mean when implying our embryos are chaotic…I’m assuming it’s NG (not good).

Thanks for all your support and we will update with information as we get it.

This morning I called the RE’s office at 8am like a crazy person to remind them to call me with my 5 day biopsy numbers. Who does that?!

The nurse called me back an hour or so later and told me that 6 embryos made it to day 5 …and day 6. Interesting. They biopsied 4 embryos yesterday (day 5) and two more procrastinators today.

SIX! Of course I’m greedy and would have liked all 8 but SIX IS AWESOME!

After the call I got to thinking… about the number six.

Here are some facts that make the number 6 as awesome as it is.

• It’s an even number and we all know those are better than odds.
• In chemistry: 6 is the atomic number of carbon, the basis for all life.
• In Biology: Insects have 6 legs.
• In Sports: The Red Sox have retired the number 6, for Johnny Pesky.
• In Arts: The number of sides on a cube, hence the highest number on a standard die.
• In Culture: 6 is a lucky number in Chinese culture.
• In Technology: On most phones, the 6 key is associated with the letters M, N, and O. One of the words spelt with these letters is “MOM.”
• Extra-sensory perception is sometimes called the “sixth sense.”  I’m sensing this is good news.
• Lastly: “The number 6 is the “Mother” number and is essentially a working, building number.  It symbolizes responsibility and service, which needs to be achieved through love, nurturing and protection. taken from http://numerology-thenumbersandtheirmeanings.blogspot.com

Today happens to be the 5 year reunion of my father’s passing and we knew he would send us a good number. 🙂 Here are a couple pictures of one of the greatest Dad’s ever. I’m pretty sure my husband will be just as great as he was.