IVF is BIG BUSINESS Part 2a

I might have been a bit unfair on the lunch thing. 20 years of lunches for my former RE might be a bit of a stretch. If you factor in a 15 buck lunch (hey, it is NYC!!) for 20 years we are looking at 109K…we spent just a little over 80K on three cycles at that clinic in the span of three months. My bad. So, that one foregone lunch gave my RE approximately 18 years worth of lunches – yep, IVF is big business (yes, you have to revert back to my previous post if you want to make sense of what this means).

All I had to do what drop a name. A wealthy name and I was a new patient at a swanky, Park Avenue fertility clinic where I rubbed arms with people we all know – household names. They wore big dark glasses in an effort to hide their identities making me feel confident that I was in the right place..surely if she was here then I was indeed a lucky woman on the verge of creating my very much wanted family. And all I had to do was drop a name and the six month wait list evaporated! Granted, my boss represented millions of dollars so certainly my association put me in a new league..the “there is no waiting list” league. Once they met my dapper, English husband in three piece suit, we were also profiled, I assume (as did they). I loved the conviction with which this doctor spoke to us about our chances in his capable hands “I can get this desk pregnant”, he told us. Much later I found out that he says that to literally every single patient he meets. It is part of the pitch, at the time it was all I needed to hear.

3 cycles – two disasters and the one that worked. The last one was the first time I decided not to follow doctor’s orders, incidentally. I had to trust my gut. As a bit of background – First cycle was the works – PGD, max dose meds and NO NORMALS. They told me that I would have to do another PGD cycle to see if I had any normals at all. In 2007 it was only being considered that embryos can self correct and perhaps a few of those seven embryos would indeed have resulted in a healthy baby. At that point it felt like my world was being shattered in a million little pieces. The next cycle brought a bit of relief, I had three normals out of seven, transfered all three embryos and ended up with a chemical pregnancy. These were back to back cycles, mind you and I was a mess. I started reading all that I could. It seemed as though my embryos might be harmed by the PGD process so we decided to do blast transfer – I essentially went against their advice to test and thankfully got pregnant after transferring 4 blasts. I’m not giving myself credit but had I not read the stories of other women and plenty of studies that suggested high doses of medication and invasive procedures such as PGD were proving to be too much for some embryos, I might not have switched things up and we might not have our now not so little one. I definitely have my opinions about their protocol (they have ONE and it is a max dose medication 300 menopur, 300 follistim and 20 lupron throughout your cycle!) and it is designed to keep your eggs growing evenly. It doesn’t work well for older women and my last cycle there (three years after my success) was an epic disaster. For what it is worth, that clinic was a concierge experience. I had a doctor on the phone within 5 minutes any time that I called, I had many, many conversations about what might be happening and what the plans might be. I had plenty of pep talks and I trusted these people – and I still do. Do I think they are perfect? No. Would I send my best friend there? Yes and no..that would depend on her willingness to speak up and get involved. Do I credit them for giving me my son? Yes. But again, they were willing to work with me and treated me like an individual. I give them credit for always looking outside the box, being open to trying, for example, tamoxifen off label for lining issues. This clinic is small and not trying to have 100 cycles a month. And this clinic did kick the tires – they knew about my blood clotting problem (however minor) and they had checked to see if my body might be attacking the fetus (it looks like it was). They also opened me up before IVF with a lap and looked to find if I had endometriosis (I did). I give them credit for realizing that common sense trumps studies in many cases and for checking things out BEFORE a problem occurs. The way they operate doesn’t appear to be the norm (at least not from the many people I know and have talked to over the years).

Clinic #2 was a disaster for me. The doctor was great – he trained and worked at Cornell and I liked him a lot. He was pretty much up for whatever I wanted to try (AFTER he realized that the protocols he was using were not working, then and only then did I get to try my own protocol, which worked and was based on lowering my dose for quality not quantity – incidentally I did get the same number of embryos)… I will never forget a conversation we had early on in our relationship. I told him that I noticed that most of my friends who had been on the pill (I made sure that I avoided it like the plague) got pregnant fairly easily in their late thirties and early forties. He assured me that it was just luck and that no studies indicate that the pill has any affect on fertility. Fast forward 6 months, I’m in his office and he tells me “Oh, you might be interested, a study came out showing that the pill very well may “suspend” fertility – something about stilling the ovaries”. All it took was a study to have him believe….all I had to do was look around me at everyone getting pregnant mostly RIGHT after coming off a 20 year relationship with the pill.

Like many cycles, doctors have plans or protocols for patients. Rarely are things customized beyond a handful of protocols. Rarely does the clinic, even the very best, perform a series of “kick the tire” procedures before heading full steam into a cycle. Sure they do one day workups but fail to check for some of the common tests that one might consider after repeat miscarriage or failures until AFTER those failures occur. Case in point – my good friend, after two years of trying with CGH normals, donor eggs (normals) – JUST found out that she is missing the beta integrin protein which is important for implantation AND she has the MTHR mutation and needs serious folate supplementation.Is it a wonder that she has had miscarriage after miscarriage? The thing that bothers me is that SHE had to request the testing – they were going to keep on going with her remaining CGH normals never thinking to have some pretty basic RPL tests performed. Why in the hell were these things not discovered two years ago at her first “top tiered” clinic?

What about all of the women who have minor blood clotting issues that go unchecked and have needless miscarriages – HELLO, this is IVF 101!! I cannot understand why clinics wait until 3 miscarriages to test the fetal tissue following a miscarriage, for example. NO, NO and simply NO! All of this is just information begging to be collected. Where are the reproductive detectives? Many of these doctors have likely seen it all and for most patients there is no mutation, there is no missing protein and they will get said patient pregnant after approximately 3 IVFS. That is what the studies say! For most clinics there is no problem until you have 3 or more losses under your belt and that, to me, is profoundly screwed up. I go to arguably the very best clinic in the country and had to ask for the beta integrin test (I was fine) and I had a very long conversation about my immune reaction toward the developing fetus. I got an eye roll. Really! My doctor does not believe in immune problems. Not enough evidence. Well, let’s see – if infertility affects 1 in 10 women and immune issues affect 2% of THAT population, is it worth it to them to put their spot light on a problem that really only affects a miniscule portion of their population, er client base? I wonder aloud. I’ve been to four clinics and interviewed far more clinics. I have hundreds (yes, hundreds) of friends who have gone through IVF and the running theme is to give IVF three tries and then move on to donor egg, three miscarriages and then move on to testing. What is the deal with the number 3??

Let’s face it, this is a business not a rainbow factory…and no clinic wants repeat failures, bad stats and an even worse reputation. In order to grow and be prosperous they need to get results. And what better way to do this than with the eggs of some fertile 20 year old who can give 25 nice eggs which turn into a decent amount of embryos (normally my friends who go the donor egg route end up with approximately 15 mature, fertilized eggs with 8 – 10 blasts to freeze but that is just my sample set!). It appears to me that hand holding a bunch of post 38 year old women, tweaking protocols with the hope that it might work isn’t a great business model for the average IVF clinic. Heck, doctors are busy and nurses, well, they are overworked, underpaid and I don’t know how they keep it all together. I’ve been underwhelmed plenty of times by inefficiency and every time I did get a great nurse, she would get a promotion and leave me. I can’t tell you, other than “concierge clinic”, how many times an office has closed forgetting to call me with my instructions or gave me the wrong instructions for my nightly medication. Is this OK? Not for the amount of money you are paying…not in the least.

When we put our dreams in the hands of someone else we expect them to be acting in our best interest. While I truly believe that most REs want to get their patients pregnant, there are plenty, plenty that just don’t want to bother with the customization and individualization that a majority of us need to get pregnant. They have hundreds of people cycling at the same time and just getting their cycles correct is a miracle, let alone monitoring and tweaking a single’s person’s protocol for maximum benefit. In IVFland, we have to be knowledgeable, be prepared to put in many hours reading, getting to now how our bodies react and using our voice. We mistakenly believe that doctors know everything, well, I did, but no more and neither should you, not 100%. If a cycle isn’t going well, cancel. Learn and try again. Don’t let things happen to you – be your own advocate.

I may be making some pretty big generalizations here but think about it – these doctors are coordinating hundreds of women’s cycles at the same time. I do have to commend CCRM for not manipulating cycles like other large, successful clinics who put an entire group of cycling women on the pill and start stims on the same day to make their lives easier. Actually, they likely couldn’t operate their clinic at all if they didn’t have some sort of regimen as described. I get it. But that clinic would have never worked for me….my body can’t take suppression. How do I know? I’ve had far too many unfortunate cycles that started with suppression – but that is me, it works well for others. Some women need something other than protocol number 7 with saizen – some women likely need immune support and blood thinners and a repaired septum but these clinics are getting so big that they aren’t ticking off the important boxes at the beginning – BEFORE you have been through half your savings.

I’m not done, there is more but writing about this literally makes my head hurt. While I’m trying my best to be fair, I do think there is a problem and no clinic is immune to it. This is a business that employs science but the X factor (that, of course, being the human factor) means that there are times when things get overlooked or mistakes are made and a cycle suffers for it. For the clinic they chalk it up to a little mistake but for some women/couples that little mistake meant the end of the line. My husband thinks I’m alluding to some pretty big accusations but I’m not. I’m saying that I know far too many women who have struggled and had to pretty much take matters into their own hands, demand the tests themselves and even go as far as altering their medication (which is NOT a good idea) to finally take home a baby while others have gone another route to parenthood.

I’m the exception for a lot of things, it seems, and for that reason I’ve not trusted my doctors completely, I’ve researched and taken matters into my own hands. But the point is that I should not have had to do that.. (I refer to the time when I lowered my menopur dose when my doctor wanted to raise it). For 19K, I should have had a phone call with the doctor in which I reminded him that too much menopur gave me two crappy eggs just two cycles previous. Instead I spoke to a nurse who could barely get my last name right and insisted that I keep with the program. Goodness, I have enough to worry about these days, did I mention that I share the same exact name with another woman at my present clinic? Yep, I’m worried about my embryos being destroyed by accident or getting transferred to this “other woman”. Don’t roll your eyes. I was one of the first people to know that my dear friend Carolyn Savage was pregnant with someone else’s baby. Google her….that is one heck of a story and ends in the most wonderful of ways but it might not have. She took matters into her own hands, not once but many times…and that is what we all need to do. I’m not saying that it is wise to second guess your doctor and make up your own protocol but if something doesn’t feel right, get another opinion, heck, get 30 more opinions because this is the most important thing in the world to you right now and there is no need or room for regrets. I write so that you can potentially not have them….

Soon – a list of kick the tires tests and the best diet for getting pregnant according to the people I trust most in the world and they are not doctors, they are people like you and me who saw that something wasn’t working and, rather than wait for a study to tell them that iodine deficiency and Vitamin D deficiency were huge reasons for a spike in infertility or sensory processing disorders in young children, they devised their own successful plan for making sure their bodies were ready to support a pregnancy. It is all common sense but we seem to be woefully lacking in that commodity at the moment. Maybe we’ve all become a bit too big, bloated on information and full of the opinion of others. Certainly I’m just another voice in this chorus but I am not ever going to tell you what to do, I’m going to walk with you and lead you to find your own conclusions and I can guarantee, your issues won’t be the same as mine (oh, other than we both want to have a child).

There I’ve said it, most of it.

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IVF #2

In late March we began our second IVF. Protocol stayed the same. I responded exactly the same way. 8 eggs retrieved, 7 fertilized with ICSI.

This time I had little patience. My mind had been spinning for weeks with horrible thoughts of never having my own child. My head hurt from the lupron, my ovaries became heavy and enlarged…and the money flew right out of our bank account. All of these things made me a downright miserable person to be around….

My mood improved when I received the results …there were three normals. I was happy…and relieved. I could produce normal embryos after all! There was still hope! Two boys and one girl were waiting in a dish and two days later they all went back to mama. I was hopeful but one extremely bad experience seemed to weigh over me. I couldn’t shake the feeling of impending doom.

A few days later…my in laws arrived. Don’t get me wrong, I love my in-laws. C and I have spent much time with them before we were engaged traveling to all manner of sunny spots, drinking margaritas and having wonderful chats over dinner. My mother in law is the kind of mother that most of us wish we had. She loves her children in a way that is so different than any American mother – she is kind and accepting and even when she doesn’t approve she holds her tongue and manages to keep a smile on her face. My father in law…well….he is the king of inappropriate comments. I normally don’t mind his biting comments – because, as many of you know, I can give it right back…. but this was too fragile of a time for me. There was too much at stake. If he said the wrong thing with me on lupron – all hell would break loose. They were there with us when I received the news – I was pregnant…but my beta HCG level was 4. Basically anything under 5 is negative but, as my doctor said, embryos have to start somewhere. Two days later it had disappeared and I was devastated. I quickly booked another IVF to start straight away and scheduled an appointment at Cornell (the mother of all infertility clinics) in case the cycle failed. By this time I had lost faith in my RE and in my own body. I remember planting sunflower seeds at our new house upstate and when they failed to grow, I sobbed. My father in law – he tried to console me, I suppose by saying “you have a new home, you have C as your husband – look around you at this beautiful home – why do you want to be miserable?”. That made me so angry – I stormed out of the house, skidded the truck out of the driveway and sped off to buy a book entitled, “how to deal with difficult people”. We got over it and he apologized but I’m fairly sure that he still doesn’t understand why I was so offended and upset at his comment. I can deal with him telling me I have a fat ass (which he does!) but telling me to be happy at the most unhappy time of my life? That I couldn’t do.

IVF #1

We started our IVF cycle at the beginning of March. My husband (I think we’ll call him C just to keep his identity off the internet) was still reluctant and felt that we hadn’t tried long enough naturally to be taking such actions. When we sat down with the doctor he told us that we had impaired fertility based on the morphology (shape) of my husband’s sperm. Most men have around 14% normal forms – my husband had 5%. When we spoke to a urologist he explained that this could easily have been the result of too many hot baths…(and boy does C like to marinate in his own dirty water). In sum, our RE told us that we would probably be able to conceive but the timeline was more likely to be 2 years trying naturally – not 2 months.

I went ahead with the cycle despite the fact that C was in the Middle East on business and not fully on-board with the decision. He was about 80% there….but I had to pull the trigger and start the cycle. There were some disagreements but in the end we both agreed that if we wanted to have a second child, time was of the essence. We signed up for PGD in addition to the IVF cycle. PGD stands for Pre Implantation Genetic Diagnosis – on day three of the embryo’s life a single cell is taken out and examined. They check for 9 of the most common abnormalities and if both chromosomes are found to be present the embryo is deemed normal. This process adds a whopping 7 thousand dollars to an already hefty 17,000 dollar cycle fee -but we wanted to get it right the first time. Many people use PGD for gender selection – and so, we decided to put back all the boy embryos and freeze the girls for another cycle. As I write this I want to go back in time and slap my face as hard as I can.

In our minds this would be a one shot deal – certainly if nothing was really wrong with either of us this would work on the first try!

Thus the cycle began. C gave me nightly injections of Follistim and Menopur in the muscle and I gave myself shots of lupron in the am. Follistim and Menopur tell the ovaries to produce follicles – lupron shuts down your system so that you do not ovulate before the doctor has had a chance to extract the growing follicles. My ovaries responded well – it looked like I had approximately 15 follicles and was told to trigger (you take one shot intramuscularly at exactly 34 hours prior to retrieval of the eggs). For us this occurred at approximately 1:25am. on a Saturday morning. On Monday am they retrieved 8 eggs and 7 fertilized with ICSI. ICSI is a process whereby a single sperm is selected and introduced into the egg…it is an efficient way of getting the egg to fertilize and thank God we used it or nothing would have fertilized at all.

On day 3 the embryologist began the biopsy to determine the health of our embryos. At approximately 3pm that afternoon the doctor called to tell me that we had five boy embryos and 2 girl embryos..and that each and every one of them was abnormal. Down syndrome, trisomy, polyploidy, Turner syndrome the words just kept coming….I remember hearing him but not being able to really understand. He repeated that there had been a catastrophic result with our embryos and that there would be no transfer. I felt like I was underwater. I called C and could barely get the words out. I went into my boss’s office and cried. C came to get me at work. I was so upset I couldn’t breathe.

Later that night we called the doctor again. He told me that I was taking this way too hard and that he had seen this happen to other women. “How many times in your career have you seen someone at the age of 37 have absolutely no normals” and he said, “a handful”. The internet told similar stories – one well known doctor wrote that women with all abnormal cycles were almost guaranteed to produce this same result over and over again. This doctor recommended going straight to donor egg. I was devastated. The thought that I might never have my own biological child sent me into a tailspin for a few days. I emerged ready to tackle the problem. I spoke at great length with my RE and he said that after talking to the embryologist their recommendation was that I do another cycle with PGD and if we received the same result, we would begin talking about using a donor egg.

During the next 30 days I earned my google MD. I read every article, every paper on the subject of aneuploidy, PGD, IVF outcomes…and then I remembered early in March before the cycle started. C’s best man Dave had visited from the UK. His kids were very ill at the time with high fevers. One week later during the beginning of my cycle I caught this virus. I had a fever above 101 for over 3 days. The internet told me that this fever could have damaged my eggs and created the result. I wouldn’t know until the next cycle – but I clung to that hope like you cannot imagine.

These were the darkest days I’ve ever known…. it would be a full 30 days before I would know if I’d ever potentially be able to have a biological child of my own.