Kelly and I wanted to touch on a subject that many people have to deal with, but that most still don't feel comfortable talking about, In Vitro Fertilization (IVF). We decided we wanted to share what we went through by describing the process, what it's all about, and talk about some of the highs and some of the lows. We hope this gives the next couple who has to undertake the IVF process some insight into how it works.
So, what you'll read is my recap of the process with Kel doing the final edits and adding some of her own comments. A "joint post”, if you will. I took notes after each appointment [of which there are TONS!] as well as plenty of photos along the way, not only for us to look back on down the road, but with this post in mind as well.
Getting Started:
In our specific situation, with my testicular cancer history, we knew we'd being going through IVF from day 1. Other couples may have to undergo various tests and procedures to figure out who the "problem" is, but we already knew. It definitely saved us some time and money I suppose. We started the process in February of 2011 with an appointment to meet an IVF doctor who we had heard was one of the best around. The appointment was more of a meet and greet and we didn't get in to many specifics during that time. We did plenty of research on where to go, [read: Kelly did plenty of research on where to go] what size practice we'd be most comfortable at, and so on. In the end we chose a small office where we'd see the same doctor at each appointment. This appointment in February got the ball rolling and then we scheduled another in April to get a more detailed assessment of what was in store.
After that April appointment we decided to officially start the process. It commenced with some standard blood work for each of us and some serious coordination, phone calls, and paperwork to get my sperm shipped down to New Jersey from Boston, via FedEx, mind you! I should rewind here and mention that the very fact this was even possible was thanks to my great doctors at the Dana Farber Cancer Institute [back in 1996] who had the foresight to have me bank some sperm should I ever need it. Guess what...I needed it! There was a bunch of paperwork to fill out and in the end we transferred down 3 vials of the 12 that I had stored at Brigham and Women’s Hospital in Boston. We had to coordinate the overnight shipment so that it would arrive at the doctor’s office here in NJ on a certain day when they stay late in case the FedEx driver was running behind. The hours at this particular office are all very early; most appointments are at 7 or 8am and I think they're out of there very shortly after lunch. Since we knew we were traveling to Poland at the end of May, we scheduled the shipment to leave Boston on June 7th and arrive here on June 8th. We had the tracking number and watched it the entire way to make sure it arrived safe and sound. That afternoon I got a call saying everything had arrived as planned and was now staying cool in the freezers at our doctor’s office here in NJ. Big relief!
While all of this was going on, Kelly went through a battery of tests and procedures to check, re-check, and check again that everything would go smoothly. She did a Saline Sonohysterogram, a mock embryo transfer, and we both did some genetics blood work. This particular doctor wants to be sure that when he does the actual IVF embryo transfer that it's going to be a smooth as possible and all of this is in preparation for that big day. The Saline Sonohysterogram is a test that allows the doctor to get a picture of the inside of your uterus. They are trying to ensure there are no benign growths (i.e. polyps or fibroids) that could create an environment that is “hostile” for implantation. The whole test only takes a couple of minutes, but Kelly said it was one of the most painful parts of the entire process. The reason for the pain is that they have to inflate a balloon inside of you for about 15-30 seconds and apparently it does not feel good. The mock embryo transfer was done on a separate day and was more uncomfortable than painful. Again, this test only takes a couple of minutes and the doctor is actually doing a trial run of how he will insert the embryo(s) on the actual day of the transfer. The worst part of this test is that you have to have a full (extremely full) bladder for the test. Kelly was drinking big bottles of water beforehand.
We then had an appointment (the IVF consultation) where we spent a good hour at the doctor’s office going over the rough timeline of a typical cycle and the various shots and medications Kelly would have to take during the process. There is a lot of information to learn, and it can be very overwhelming at first, but you quickly become an "expert".
A few days later we got an overnight shipment of refrigerated medicines. All sorts of shots, pills, needles, gauze, alcohol wipes…you name, we got it. I’ll touch on these medicines a bit later in the “money” portion of this post.
Shots:
After that April appointment Kelly started to take pre-natal vitamins that her OB had suggested. Those certainly help in getting her system ready to become pregnant but the real trick in IVF is creating the most ideal conditions possible, and that has to be done by prescription injections, lots of them.
The timing of each IVF cycle is also very complicated. Our doctor’s office has certain scheduled Fridays (typically every other) that they start cycles in order to keep their patients on cycle together. Therefore we never knew exactly when we would be starting the cycle. We had to wait until Kelly got her period and then call the office right away to be put in the next available cycle.
IVF Attempt #1 [which we now refer to as Attempt # 0.5] officially got started on June 20th with a shot of Lupron in the evening. Lupron is actually a drug that over stimulates the body's own production of estrogen in women, which causes that production to shut down temporarily. These shots would continue each night all the way until July 1st, when Kelly would go into the office for the 1st ultrasound.
At this point, we also added in a drug called Follistim that is meant to stimulate the follicle growth and produce as many quality eggs as possible. This is an interesting shot that uses a fancy-dancy injector thing (that looks like a big pen) to dole out the proper dosage. Once again it took a few attempts to get used to it, but in no time we had it down. For about the first week I would give Kelly all of the shots, in her leg, but soon after she decided to take over. I prepared all of the shots (each required different preparation) and she injected them. She preferred the control of knowing exactly when the pain would come and regulating how fast she pushed the various drugs into her system. Some were a bit painful going in…
The shots continued and every other day Kelly would return to the office for blood work and an ultrasound to count follicles. Each time she’d get a call in the afternoon with updated instructions and varied dosages of the shots. A typical 1st week of appointments included starting on a Friday and going back the following Monday, Wednesday and Friday. The good part of the whole process is that almost all our appointments were at 7 or 7:30am, so they don’t really interrupt your day too much.
Unfortunately after the 4th ultrasound (on the Friday) our doctor concluded that not enough follicles were being stimulated and he felt it was best to just cancel the cycle. He said that some patients react more sensitively to the Lupron and it had over-suppressed Kelly’s system. With most insurance plans only covering a limited amount of attempts, he said it made sense to start over and get better results. We’ll touch on the insurance issue below, but essentially an attempt is the egg retrieval (i.e. the process in which they go in and remove the eggs from the follicles)…so if you pull the plug before that happens it doesn’t count as an official attempt for the insurance folks.
The doctor’s exact words were “I know we can do better”. We trusted him on this, but regardless it was still something we completely didn’t expect and was very disappointing at the time. When you go through IVF you learn very quickly that it is all a numbers game. Our doctor was great about always telling us the percentages and odds. So the more follicles that grow = more eggs = more good quality embryos (hopefully) = greater odds of getting pregnant.
However, this now meant going back to the drawing board and starting over again at least a month or more later. As I mentioned before, Kelly needed to stop taking all of the drugs and wait for her next period to come before we could start another cycle. One of the hardest parts of the IVF process (according to Kelly) is the waiting. You are constantly waiting for something, the next cycle to start, the next appointment, the next blood work, the next results and it is very hard to put it out of your mind. And that leads us to attempt #1.5…
Attempt #1.5
After waiting a short time, and with a beach vacation planned in August, our next round officially started on September 2nd. Another batch of drugs arrived from the FedEx guy and we promptly put them in the downstairs fridge, ready to roll and hopefully make it all the way. Just our luck though, we started the first shots on a Friday night and wouldn’t you know they didn’t include the correct needles for one of the drugs, Menopur. This cycle the doctor gave Kelly Follistim, again, and also added Menopur to “throw the book at her” in terms of stimulation. Since the shots are done in the evening we couldn’t call the specialty pharmacy that ships the meds, so we spent about 2 hours at the local Walgreens working with the pharmacist and our doctor over the phone trying to rig up a solution that would get us through the weekend. The needle was very specific so it wasn’t easy, but we managed to make it work.
We marched ahead with the Follistim, Menopur, and then even added in another shot during this cycle called Ganirelix. We continued with our Monday, Wednesday and Friday appointments the following week tracking the follicle growth and adjusting the dosage of the shots as needed. By the Friday appointment the doctor determined that we were getting close to the point of the egg retrieval, which he scheduled for the following Tuesday morning at 7:30am. On Sunday the 13th we stopped the 3 normal shots and just did the “trigger shot” of a drug called Ovidrel. This shot has to be done exactly 36 hours before the egg retrieval and it’s timed down to the exact minute. Kelly took the shot at 7:30pm on Sunday night for our 7:30am Tuesday appointment.
Egg Retrieval:
The egg retrieval portion of this process is done fully knocked out under anesthesia. It doesn’t take too long, but the doctor is in there with a needle inserted into the follicles removing the eggs, so he can’t risk any moving around. The doctor was able to retrieve 13 eggs, a baker’s dozen!
This is where things get a bit tricky. At this point the eggs are passed into an adjoining room where the embryologist sits and starts her work. Of the 13 pulled out, 11 were mature enough to use, and 7 were fertilized. Again, this is where the numbers game really comes into play. The amazing part of the process is that they actually use a technique called ICSI to insert one sperm directly into each egg. This is a relatively newer development in the IVF world and obviously creates better results. 13 was a pretty average number to start out with so we were happy. The embryologist commented a couple of times to me that she was blown away that she was unthawing and using sperm that was 15 years old. I guess science is a pretty crazy thing at times and even someone like her who had been doing this for a long time was excited to make this work.
In between the egg retrieval and the final stage of the embryo transfer, Kelly didn’t have to do any more shots but did have to start taking other medications (progesterone and estradiol).
Embryo Transfer:
By Thursday afternoon the office called to say that the transfer would take place on the 5th day after the retrieval instead of the 3rd day (so Sunday not Friday). I’m still a little fuzzy about the science here, but a 5th day transfer is always better than a 3rd day. At the 5th day they say the embryos are at the blastocyst stage and are more developed (which is always a good thing).
The 5th day embryo transfer brought us to Sunday the 15th. Talk about a hugely climactic day that is really anti-climactic. You go in, do the transfer and then wait, wait, and wait some more! But let’s back up a bit. I was actually allowed into the room for the transfer, donning full scrubs, mask, hair net, you name it. 6 of the eggs were viable for transfer and the decision was made to transfer over 2 of them. They would monitor the progress of the other 4 and attempt to freeze them if possible. If they are able to be frozen, the eggs could potentially cut out the entire process up until this point in future cycles. Unfortunately though, those the eggs didn’t progress well enough to be frozen.
Anyway, back to the actual transfer. So the embryologist comes out of her special room, confirms that she has two eggs for Kelly, Kelly states her name, then she passes them along to the doctor in a very long syringe and he inserts them in. It’s all very quick. Actually the quicker and easier the embryos are transferred back into the uterus the better. This is where the mock embryo transfer Kelly did at the beginning comes in handy. The doctor actual drew a diagram during the mock transfer so he knows the exact angle and direction to insert the syringe. Timing is of the essence in this process. They actually also know the exact spot in the uterus that they want to drop the embryos. The doctor said everything went as well as he could have hoped.
Then, like I said above, you begin the waiting process.
A few days later Kelly would go back for some interim blood work to check her hormone levels, but the big day would come on Tuesday the 27th, the official pregnancy blood test. Some people cheat and try the home tests, but the nurses all said not to torture ourselves because you can easily get false test results. If you do them too early they can give false positives because you still may have some of the left over drugs in your system and if too early could lead to false negatives (since you are literally 1 minute pregnant at this point). So we saved our money and did everything through the doctor’s office. Later that afternoon we’d get a call with the results…
The Phone Call:
It was a pretty quick voicemail Kelly received, NEGATIVE. Of course the news was difficult to take but we’d have to regroup and get ready to start another round. There was really nothing more we could do. The chances of having a baby naturally are at about 20% I believe, while the probability of IVF working with Kelly’s age and good health is about 60%. The doctor told us that we had done everything we could do but sometimes you fall on the wrong side of the statistic. The science can only go so far and then it’s all left up to the big man upstairs…
Attempt #2.5
I’ll give you the short version of this attempt since it’s essentially the same as 1.5, save for a few changes in the dosages of the meds. On retrieval day we got the news that 15 eggs were retrieved and 5 of them fertilized…however all 5 were better quality than the last cycle! Once again we transferred over 2 embryos and hoped to freeze the remaining. Unfortunately we were not able to freeze these ones either, however, on Tuesday November 15th we got the phone call we’d been waiting for….POSITIVE!
Here are the two actual embyros that were transfered over...photo taken under a microscope!
The positive news was a huge relief! Now we’d have to keep this all a secret for a few months (which we had already been doing since July) to be sure everything was a-okay before we started to spread the news. That might have been the hardest part! Most people don’t know they’re pregnant on day #1 like this.
Once we got the positive test result, Kelly continued to go for blood work every other day for about 2 weeks to make sure her “beta” numbers climbed each time, meaning the baby was growing and growing. So again more waiting and holding your breath before each phone call. We were able to use a local blood lab now instead of making the 30 minute drive to the doctor’s office. Unfortunately the blood draws became Kelly’s least favorite part of this entire process, even worse than the daily shots during the cycle (which only lasted about 10 days). The blood work never seemed to end.
Yeah...that's not a happy face right there, is it?
She also had weekly ultrasounds until 9 weeks through the IVF doctor so they could track the progress of the embryo. I believe they were able to see the heart beat definitely on the ultrasound by around week 5. At week 9, we “graduated” and Kelly was released to see her regular OB. The baby really started to take shape in the December 19th picture. Have a look.
At the final appointment with the IVF doctor they presented a little framed image of the ultrasound. In return we donated back about $4,000 worth of leftover drugs. They use them for emergencies or for other patients who do not have insurance like we do to cover IVF. Needless to say the doctor and team of nurses were extremely appreciative.
Money and Insurance:
The IVF process raises yet another issue that people don't like to talk about. Money. How much does all this cost? In short, it costs a lot. Let's start with those photos of the drugs I showed above that got shipped to our house. Cost? About $10,000 worth of drugs, needles, cotton swabs, etc, in each shipment. I think we got 3 of those shipments! It was kind of funny when Kelly was on the phone with the specialty pharmacy confirming the first order. They told her we owed $250 bucks and she questioned what it was for (forgetting that drugs have co-pays). He said “Ma’am, you are getting about $10,000 worth of medications”. I guess paying $250 wasn’t too bad then! One of the memorable stories was when we were without power for 3 days after Hurricane Irene and had all of this stuff in our basement refrigerator that was quickly losing its cool. Thankfully we were able to secure a few bins of ice and keep everything cold.
The price for each cycle varies based on all sorts of factors but the doctor told us that each of our cycles would have cost about $9,000 if we didn’t have insurance coverage. We asked the question so we'd have a number in mind incase for whatever reason the insurance went away and we'd have to pay for it all ourselves. At the end of the entire process Kelly logged onto our insurance website and downloaded an Excel sheet with all the claims and the grand total was just over $65,000! You read that correctly. Like I said, it's a lot of money. It's important to note that insurance coverage does vary from state to state and from policy to policy. Places like NJ and MA mandate that insurance companies cover fertility treatment while states like PA don't. There are actually only 14 states in the country that have laws mandating that companies cover fertility treatments for group health insurance plans. So things like where you work and in what state you work make a HUGE difference. Some larger companies also "self insure" and they may or may not cover it. So do your homework before jumping into something like this. Unfortunately many people do not have fertility coverage and have to spend some serious cash to pay for this. We feel incredibly lucky to have the coverage that we do.
Speaking of "out of pocket" costs, while we did have great insurance that covered most of the bill, we were seeing a "specialist" and did have to pay a $40 co-pay every single time we went to the office, even for a quick blood draw. With about 38 different appointments you can do the math and realize that you're still putting out a good amount of money to make this all happen. You can also add in the sizeable co-pays on those shipments of drugs and it all adds up very quickly. I think I roughly calculated that we spent about $1,500 on co-pays. Still, not too bad considering…
The End:
So there you have it, our story of how we made it through IVF. Questions? I'm sure you've got some or might have some down the road. Leave it in the comments or shoot us an email. If we can give some insight that helps someone else, that's what we want to do.
Hope you enjoyed the read and are as excited as we are to meet this little girl! 19 weeks to go!
