Giant Box of Needles

So my last post ended on a positive note. Our insurance had agreed to cover most of my medications and the total we paid was around $1200. We were happy with that and relieved to know that everything was set with my medication. Unfortunately we got a call at 7pm on Thursday from CVS and I've been too angry to even begin to write about it until now. Some new information had been sent through from our insurance and somehow we still owe over $6000 for all of my meds....what?!?! Needless to say I am not proud of the way I spoke to the woman on the other end of the phone. I still don't fully understand how we went from $1200 to $6000. They said the prices for insurance are different than out of pocket and I have $3500 max for all fertility meds. They must have forgotten to mention that. Anyway, we went back to mostly our original plan. I asked CVS exactly what meds I could get without going over the $3500 max, I was able to fill all 20 vials of Menopur and 2 vials of the Cetrotide. They threw in a sharps container and some alcohol swabs too. The rest of the meds we got elsewhere for a MUCH cheaper price.

We received the first giant box of needles from CVS yesterday.  I was surprised to see that the Cetrotide came in a cooler with ice packs. Apparently it needs to be refrigerated! We are still expecting 3 more boxes which should be here tomorrow. Brian convinced me to do an "unboxing" video because he says nerdy people like them. I probably should have gone through the box first though so I wasn't just guessing as I went along. I was totally wrong on the different needles! You can pretty much just ignore everything I say, its all incorrect anyway.

New Goodies 

Batman and Renly were more impressed by the box

On a non-med related note, we were expecting RGI to be done with our DNA probe last week. When I spoke with them last Tuesday they said it was on track to be done by the end of that week. On Friday our nurse, Ashley called and said that RGI had contacted her and it would be done the following week. I spoke with our genetic counselor, Divya, today and surprise...it's still not done! While the probe "might" be done next week, we did get the go ahead to start the next step with The Fertility Center. Divya will contact our nurse, Ashley, to give her the green light and hopefully we can get this thing moving. We are just hoping there are no more setbacks.

-Emily

Medication Update

In my last post I mentioned that our doctor had sent through an appeal to get my medications covered by insurance. 2 of the meds, Progesterone and Cetrotide, were initially approved, and 4 of them, Menopur, Gonal-f, hCG and Leuprolide Acetate, were denied. I called the specialty pharmacy department nearly every day to check on the status over the past few weeks. Every day I would get the same answer, “the appeal is still pending”. That is until Monday, when instead I got the answer I was looking for, “Approved!”

Menopur - Approved with just a $70 copay! Just this being covered will save us over $1500!

Gonal – f (Follistim) – Approved. The denied the Gonal-f, however they approved a similar drug called Follistim, saving us nearly $730. This medication seems like it will be more convenient for me. Follistim is injected using a pen like needle. I’ll just put the vial in the pen, twist the dial on the bottom for the correct dose, and use the teeny-tiny needle to inject the medication into the skin of my stomach. Seriously, this needle is tiiiiny! The dial on the pen will also be much simpler than drawing up into a syringe. We are planning a camping trip to Interlochen at the beginning of August, so if my timing is right, I’ll need to give myself injections in a tent. Not Ideal, but the Follistim pen will make this much easier.

Look how tiny that is!! 

Leuprolide Acetate – Denied again. We will need to pay full price for this one out of pocket.

hCG - Denied again. I will take the name brand, Pregnyl, instead which is half the price of the generic hCG. 

So they didn’t approve all of the medication, but 4 out of 6 is pretty good! We are celebrating this as a win. I ordered all the medication yesterday and I am expecting a giant box of needles and drugs to be delivered to my door on Friday. 

I have stressed out about every aspect of the IVF process and almost everything has worked out in our favor. This reaffirms our belief that we are doing the right thing, I received an email that RGI should be done with our DNA probe by the end of this week, my meds will be here on Friday and next week we will officially begin our IVF cycle. 

-Emily

Medication and Naughty Puppies

My last post focused on insurance coverage. They have approved most of the procedures I will need, but medication is another story. It is strange to think that they will pay for the procedures, but not the medications I will need in order to have the procedures completed. Our insurance company approved 2 of the 6 main medications I will need to take. We have prescription coverage through CVS Caremark, so of course we have to fill any covered prescriptions at CVS.

Cetrotide- Approved! Only a $70 copay on this medication. This would have cost us $1600 if we purchased it out of pocket at CVS.

Menopur - Denied - They denied this medication as I am under 37 years old and I have not gone through 3 failed rounds of Clomid (another drug that stimulates ovaries). I need 20 vials of Menopur, which would cost us $3,020 if we filled it at CVS. If insurance does not approve this after the appeal, I plan to fill the prescription through Alexanders Pharmacy in Portage. It is muuuuch cheaper there and we can get it for $1,538 total.

Gonal-f - Denied - This medication denied as our insurance requires the use of a similar drug called Follistim instead (they have some kind of agreement with the manufacturer). The Follistim however was also denied under the same reason as the Menopur. We can get Gonal-f from a pharmacy called Freedom Fertility for $954.50. We do however have a 20% discount card for any Sorono brand drugs so it will be $725.88.

Leuprolide Acetate- Denied - Our insurance will only cover this if it is needed to prevent premature luteinizing hormone surges. My grandfather actually to Lupron for this exact reason while he was fighting prostate cancer. CVS charges $445 for each vial and I need 2. Walgreens price is $325 so we can get all we need for $650 total.

hCG - Denied - CVS will only cover hCG if there has not been an inadequate response or adverse reaction to a similar drug called Ovidrel. The Fertility Center has a policy against prescribing Ovidrel. When I called Walgreens they told me that the generic hCG medication was actually over 2x the price of the name brands Novarel and Pregnyl. She didn't have an exact reason as to why, but she mentioned that most insurance companies will cover the generic version so they charge more for it...definitely not kosher. CVS charges $262 for the generic version and they didn't give me the price for the name brands. Alexanders charges $75 for the name brand and I will only need one vial.

Progesterone in oil- Approved With an $8 copay. This is on the cheaper side of the medication list, but every little bit helps!

I called pharmacies all over this side of the U.S. and even looked into pharmacies in Israel and England. The ones out of the country were a lot cheaper, but there is no way to tell how they are regulated. It would be hard to know how reliable the prescriptions would be. I had some prescription discount cards and coupons too so I had to take that into account. I made myself a nifty little chart so I could keep all of the different prices straight.

Isn't this a great looking chart!! :D

Renly apparently didn't like how the first one turned out. It actually made me laugh after a long day. I just wish I hadn't thrown my scrap paper with all the pharmacies and prices away...lesson learned. I pieced together what I could and called a few of them again.

Ashley, our nurse, said the doctor would be sending an appeal letter to our insurance company by Tuesday. They thought they might be able to get them to approve some of the denied medications. When I called on Thursday it had not been sent yet...maybe today. I am not expecting insurance to change their decision. I never thought I would be willing to pay so much only to stab myself over and over again! We will begin injections sometime in the next 2 weeks or so and I'm not expecting an appeal decision to be made by then. I will just keep price shopping for now. We have been surprised by how many things have worked out in our favor through this whole process, maybe this will surprise us as well!

On a more pleasant note, a good friend of mine made us this adorable bib :)

It may be a bit premature but she and her husband are moving to Canada (not because of the upcoming election) and she didn't want to to get lost in the move. Our collection of baby things has officially started.

- Emily

Insurance is a Beautiful Thing

Many of you have already seen my excited update on Facebook, but we got some amazing news last week! Probably the best news we have gotten ever in our journey towards a healthy baby.

We met with the billing department at The Fertility Center a few weeks ago. The woman who helped us seemed excited and told us we have great insurance that will cover most of our IVF cycle. This has happened a couple different times. They tell us nearly everything will be covered and then say none of it is covered when we remind them that we are not infertile. The billing ladies don't keep up on the medical side of things for obvious reasons, it usually doesn't change how they need to process insurance.  This time was different in that they had already sent the claim to insurance and it was initially approved. They did however still need to send in all of our clinical information. Our insurance company would review everything and make a final decision from there. She wrote out the total we would owe if insurance will in fact cover our cycle and the amount we would owe paying out of pocket...it was around an $8500 different!

We left the meeting expecting everything to be denied by insurance. Less than a week later, I got a call while I was at work...APPROVED! We will only owe around $500 for the rest of the IVF procedures. I normally don't answer personal calls while on the clock, but I recognized the number. I was so excited I had to tell the ladies at work. There were hugs all around. I realized then that everyone at work knew before Brian..whoops! This has lifted such a weight off of our shoulders and made this a much more pleasant experience. Insurance will unfortunately not pay for all of my injectible medications, which will add a pretty penny to our total, but we really shouldn't complain about that now. Our doctor is filing an appeal and we will see what they say.

Tomorrow will mark 4 weeks since RGI began working on our gene probe. We were told it takes 4-6 weeks for the entire process, meaning at any point in the next 2 weeks we will be getting ready to start injections. For now, we are celebrating insurance and counting our blessings! Good things are happening! :)

-Emily

Shots, Shots, Shots Shots, Shots!

We had our meeting with Ashley, the nurse who will be handling our IVF cycle, on Tuesday. She was very knowledgeable and informative. We left the meeting feeling pretty good about the next step of this process.

Ashley went over all of my medications that I will be taking during this process. I was overwhelmed with the amount of medications that they will be prescribing. Overall I will be taking 12 different medications. Not all of them are injections, some of them are just a pill I will take before or after a procedure and I won't be taking them all at the same time. Ashley wrote out a great chart and list so we can keep everything straight.

They are starting me on a new birth control pill that delivers a consistent dose of hormones throughout the month, instead of it changing week to week. It also has an extra low level of estrogen in the pills. Who knew birth control pills could be so different? Ill take only the active pills in this pack and the next so I will not have a period. This is so once RGI lets us know that they are done creating the gene probe, we can start our IVF cycle without waiting for another period.

I will start with injections of a drug called Gonal-F, which is a follicle stimulating hormone, every night between 6PM and 8PM. This will cause an increase in the number of follicles and help with the quality of the eggs. I will also be taking a drug called Menopur at this time. Menopur delivers the hormone human chorionic gonadotropin (hcg), which helps with the growth and maturation of the eggs.

I'll have ultrasounds and bloodwork every 2-3 days while taking the hormone injections. My doctor will adjust my medications and tell me when to move onto the next step based off of my lab work and the ultrasounds of my ovaries. About 6 days after starting the Gonal-F and Menopur, I will begin daily morning injections of a drug called Cetrotide. Cetrotide blocks luteinizing hormone which is released as a result of the Menopur. Basically it prevents me from ovulating so all those health eggs stay right where we want them!

About 6 or 7 days later, based on my test results, I will give myself an ovulation trigger shot called Lupron. This gives the eggs a little extra boost to mature and causes them to break away from the follicle wall. The will stay in the follicle and will be extracted along with the fluid inside the follicle during the egg retrieval. This shot has to be given exactly 35 1/2 hours before egg retrieval. This one looks large and I've heard It's pretty painful! I'll probably have someone do this one for me so I don't hesitate too much and miss my time window. If anyone has ever felt the desire to stab me, let me know and this might be your shot.

36 hours later they will be retrieving the eggs from my ovaries. I have opted to be have an anesthesiologist there so I will not be awake during the procedure. Ashley said some women say they are fine being awake as they give you Fentanyl and Versed to calm you down and make you drowsy. I just know I was nearly hyperventilating before the mock embryo transfer and that was a very negative experience for me. I would rather not be aware that they are stabbing me with a needle the size of my arm and just take a nice nap.

Once they have all of the eggs, they will fertilize them and leave them in the incubator overnight. The next day they will tell us how many have successfully been fertilized. On day 2 they will update us on how many have continued to grow. On day 3 they will leave the embryos alone and let them incubate more and on day 5 the embryologist will come to collect the biopsies. Because so much growth is done in that 5 day window, the embryologist will come late in the day. He may need to come back the next morning to biopsy any embryos that were not ready on day 5. Our embryos will then be frozen until it is time to transfer them back into my uterus.

It takes 2-3 weeks to test all of the embryos and I will need to be on some other medications during this time and even more after the embryo transfer. I'll go over that whole process another time so I won't bore you. Ashley gave me a list of online injection training videos to watch. the small shots in the stomach don't look like they will be too bad, the needles are super tiny! The Trigger shot and Progesterone shots that Ill be on later look extremely painful. Something about the line "inset the entire length of the needle in a quick, dart-like motion" makes me cringe.

We also had to sign paperwork to determine what will happen to our embryos if something were to happen to us. We had to decide who would take custody of them if we were to split up. This would only determine who would be financially responsible for the cryopreservation of the embryos until a court hearing could be held. We also had to designate a guardian for the embryos if we were to die. My mom has agreed to be the guardian and Brian and I will tell her our wishes for if something were to happen. If god forbid something happen to us, we want our embryos to be donated to a couple who cannot have biological children of their own.

It was strange having to make all of these decisions at this point. What once seemed so far away could now be starting in just a few weeks. We have a ton going on the next few weeks, so I am sure it will be here before we know it!

-Emily

Rough Weather: Metaphorically and Literally

I again apologize for the lack of updates the past couple weeks. We spent the majority of last week fishing in Canada! Lake Esnagi is absolutely gorgeous! We got to spend some time relaxing, playing Cards Against Humanity and just got away from day to day responsibilities. We did not however do a lot of reeling in fish. It seems like we barely caught anything the entire trip!

We encountered some unfortunate weather on day 1 and we were lucky to slowly make our way back to the lodge tackling the waves. When we finally got back to the lodge, two of our group members were missing. Some very large waves took over their boat and they capsized. They managed to make it to shore when one of them got pinned between the boat and a large rock. In the excitement to get out on the water, he had also left his passport, wallet and truck keys in his backpack. He lost all of that and gained some pretty gnarly battle wounds. Some men from the lodge were able to get out there and bring them back within a few hours. Thankfully they had a high visibility vest with them and used it to flag down another boat. They were both (mostly) ok and they were able to make arrangements to get back into the country without a passport. They were good sports about the whole ordeal and were cracking jokes as they got back to the lodge.

While we would have enjoyed some more pleasant weather and a few more bites, it was still nice to get away. Brian and I have been struggling lately. The entire process of IVF has been a lot more emotional than I ever expected. There's the anxiety while waiting for all the tests, worrying about the financial side of IVF and worrying that it may not work. The fact that we could go through all of this and still wind up without a baby hadn't even crossed my mind until a month or so ago. Then there is the thought that we would go through all of this and our child could still be plagued with EB. While there is only a small chance that this could happen, there is still a chance, which is scary. I've been praying a lot for strength lately.

Brian has been trying so hard  to be strong for the both of us. While I worry about every little detail and feel absolutely insane, his response is often along the lines of "It will all work out". I have been wrongly interpreting his efforts at staying calm and trying to keep me calm as him not caring. Two 10-hour car rides gave us the opportunity to do a lot of talking and we got a lot of things cleared up.

My thought pattern goes a little something like this:

1) I feel anxious about everything taking so long
2) I feel anxious that we may not be able to afford everything and we may not be able to move forward
3) I feel worried that we may take every necessary step towards preventing our children from having EB and they still wind up with it
4) I feel guilty for worrying about that as there are women who have been trying to have babies for years and are still childless
5) I feel silly for feeling guilty as I know my feelings are valid
6) I feel overwhelmed and try to think about something else.

This all goes through my brain constantly throughout the day. Brian calls it "Spaghetti Brain". I forget where we heard it, but it is said that men have "Waffle Brains". They have little separate compartments for each aspect of their lives. They can leave one section of waffle and not think about it until they decide they want to think about that specific thing. Women on the other hand have "Spaghetti Brains" where everything is intertwined and we think about a thousand things at once. I don't know about you, but I've always liked waffles more than spaghetti!

We have an appointment tomorrow with the nurses who will coordinate our IVF cycle. They will review my bloodwork to decide which medications I will need to take. This appointments is pretty much to plan out our entire IVF cycle. They told us this it often takes up to 2 hours so I'm sure we will get a lot of new information to share.

-Emily

Magical Flying Testing Kits!

I hope everyone had a relaxing holiday weekend! Ours was filled with fireworks, hot dogs and family; the only way to spend the 4th of july!

I realized a few days ago that I forgot to post an update on my back. My doctor reviewed my x-rays and my spine is NOT fractured again and it is completely healed from the previous fracture. There was some sort of "haziness" on the image that made it look like there may have been another break. He did see a slight Spondylolisthesis, which did happen with the original break. This is pretty much where one vertebrae slides forward causing pressure on the nerve roots. My doctor does not think the issues with my spine will cause extra problems when I finally get pregnant as long as I am careful. There are braces that are specifically made for back support during pregnancy, but I would rather not have to wear one of those. My doctor wants me to start physical therapy to strengthen my back and help correct the slipped vertebrae. I am starting in a couple weeks, but until then, I am 99% pain free!

Our DNA collection kits were in the mail last Thursday when I came home for lunch. We had been told 1-2 weeks for the collection kits to arrive, but they were there in just 4 days! I asked for magically fast mail delivery and that is what we got! We had to rush around after work to make sure the samples could be overnighted to RGI. The samples had to be sent sometime Monday-Thursday so they didn't sit in the lab all weekend. With it being a holiday weekend, we had to get them sent Thursday or we would have had to wait till Tuesday. We probably could have waited a few more days, but I am not very patient and I'll pretty much do anything to speed up this process.

 

The kit included a large packet of papers, a styrofoam container with a biohazard bag to send the samples and overnight fedex packaging.We had to take some paperwork to the bank to have them notarized to send with the blood samples. Then we had to rush over to the lab to get blood drawn and then get to fedex before the overnight driver left. It was pretty weird walking down the street with biohazard bag in my hand. Half of the paperwork did not have to be notarized, so we left those unsigned till we got to fedex. One of the papers that surprised me asked if we wanted to know the sex information about the embryos. I knew that was a decision we had to make, but I hadn't really thought about it since our initial consultation.

We both agreed that we did not want to know the sex information of the embryos. While it would be interesting to know the sex of our future baby before I am even pregnant, that is just not something we need to control. The sex information of the embryo does not change the outcome of the testing for EB and we just want a healthy baby. Every aspect of this pregnancy is going to be 100% planned and we want to leave something to be a surprise. Right now I don't think I want to know until the baby is born. I may change my mind down the line, but for now I'd like to have it be a surprise. Brian said he would rather know the sex of the baby at the 20 week ultrasound, but I'm calling dibs on this decision!

Hopefully the testing time will follow suit and take half the time. 4-6 weeks seems so far away right now. We are filling our weeks up to keep busy while we are waiting. We will be fishing in Canada most of next week and after that we have appointments nearly every week.We are even making plans for the nursery to get some projects started. I never thought I would be wishing for the summer to fly by!

-Emily