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 is BIG business…part 1

Infertility is one of the most painful experiences a woman will ever go through.  It cuts you to your primal core and you don’t leave without having changed in some way.  I may have had success but it doesn’t feel that way sometimes.  I’m unresolved, as they say.  But for many women in this world, there will never be a pregnancy or a baby shower or even a marriage once IVF has had their way with them.  These bitter, painful stories don’t get much mention in mainstream media or much sympathy, to be honest. How many times has a woman been told to “just adopt” or be happy for what you have? It could be worse, you could be going blind…..oh the comments.  And then the world celebrates the pregnant celebrity at age 50 with their gorgeous boy/girl twins. The words surrogate or donor eggs might be thought but they sure as hell aren’t getting spoken (unless someone outs them – which does tend to happen).  People bemoan the duty of said celebrity to speak about their journey “for the rest of us” but knowing how painful the whole procedure is, I don’t blame them.   So I get it, the public still thinks that they can have babies at 50 (yes, even my friends in their late 40s and early 50s are still on the pill because they are afraid their OH SO FERTILE bodies will get pregnant).  My point is, this isn’t a slam dunk.  Not everyone has success with IVF and you better believe that has plenty to do with the fact that ART is becoming as popular as the big mac.  Nobody wants to talk about the failures sure as our food industry doesn’t want to talk about what is happening to our bodies or to our children (THAT is another blog post for sure).  In IVF/ART land all is well and there is always hope.  Just like Disneyland – you only see what they want you to see – going backstage is a completely different experience (just ask my husband, he worked at Eurodisney straight out of college – I think the analogy is apt – he describes backstage at Disney something out of a correctional facility, by the way).

IVF is such big business because women are delaying their family building plans (for so many reasons from financial to career to plain old “I haven’t met a guy I want to have a telephone conversation with much less marry”.  The changes in our society are making some doctors very wealthy and the whole industry is getting bigger.  Bigger scares me. Bigger should scare you.

When I started this process (I was in the office of an RE two weeks after I got married), I was a doe-eyed, newlywed, an optimistic little thing with big dreams.  Dreams that were born when I was a toddler (thank you, Walt Disney).

In the beautiful offices of my new RE there were hundreds of pictures of babies and books about parenting on every table.  The entire place screamed “here are where your dreams are made”…I quickly formed an attachment with my affable RE that, looking back, was not healthy.  He was fatherly and spoke with authority. He made jokes and made me feel special…I knew that my future family was important to him.  Whatever this man said was like a word straight from the bible. I asked A LOT of questions and he reveled in the attention.  He told me about “this blah blah conference where I spoke on ICSI”..ladidahdidah. I was enthralled.  I took notes.  He also liked reggaeton. He let me peek into his life and I spread mine open for him to examine (figuratively and I guess literally not to be TOOO crass).  After months of “trying” ahead of my wedding, I was now going to escalate the process.  I was 37 when I married and the clock was ticking.  I was making it happen. I remember taking a co-worker with me to the clinic for monitoring and showing her the 8 growing follicles on the monitor – wondering aloud which would be my child or children.  My fear at that point in life was multiples.  I was terrified that I’d be having six children at once.  I never once considered that I would walk out of there empty handed. Like everything else I’d known to be true, I’d be a mother…that was a given, just as I’d go to college and meet a nice man and eventually have a dog and picket fence.  I’d already created my life long before I started living it, it seems.

In this clinic I started to learn a few of my first lessons in infertility and the business of disappointment.  The first lesson, looking back, is that I was an enormous dollar sign. I represented many, many potential dollar bills. They has assessed me – they knew my financials (where we worked, how much my husband made, how much I made) and they knew my desire was strong. They combined financial potential with desire and came up with an equation.  I was worth at least 3 climid cycles, 3 IUS and 7 IVF procedures.  Oh yes, my commitment was strong and I had really amazing insurance and back up cash at that point..  They started me off on Clomid and let one of my follicles reach 28 before triggering me.  28!  The other was around 24.  I started to get annoyed and thus began my studies in Google MD.  The next Clomid cycle was an interesting one.  I got pregnant but nobody gave me progesterone.  My level was a whopping 5 but I had a positive pregnancy.  Not viable, they said.  Quite likely because I was never given progesterone support.  I left that clinic and never went back – far short of their financial plan for me, that much I know.  I had no plan B for the first time in my life.  I vowed to do a bit more research for the next time. It was 2005 so things like vitrification didn’t exist (or if they did, they were not widespread).  PGD was around and things like CGH were but a hope….  My new boss found out that I was struggling and pulled me into his office. At the time I was working as the right hand for the COO of a very large investment bank.  My boss was extraordinarily success at everything but procreation, it seemed.  He gave me a number and a name of a doctor that would help.  His wife was currently pregnant with twins and they had been trying for six years until they went to the name on the paper. I walked out of his office and dialed the number.  Unfortunately they were full and would not be able to see me for six months.  I mentioned my boss’s name and suddenly the doctor was available to meet me that day – he would forego his lunch for me. It was only one lunch, after all.

Future told, my visit would enable him to eat about 20 years worth of lunches.  Yes, 20 years.

And this is just the beginning.

Time to share…..

I might not blog much but I’m always thinking, always researching and always talking about infertility, the science, the process and I keep my ear to the ground (I mean, I’m listening to A LOT of people). I need to post more about what I am learning because it seems, like so many other things in the world we live in, that information isn’t getting out there. People put so much trust in their doctors and the process that they don’t question why they have failure after failure. The internet is a dangerous thing – someone posts an article and it becomes the truth. Let’s take for example carrageenan (a substance used to thicken liquid – essentially a type of seaweed). There have been a number of studies linking it to inflammation (and inflammation leads to…cancer). What the studies do not tell you are that there are two types of carrageenan – and one is a heck of a lot more harmless than than the copious amounts of sugar one eats every day (which absolutely feeds cancer). I’m not saying the stuff is safe but the key is moderation and thoughtful research/discourse. Just because one person says something is true does not make it so. We have to become our own advocates and know how to uncover the truth. In our attempt to find a quick solution to something that ails us, pains us we often neglect the due diligence process. We get behind people like the Food Babe or Dr. Weil or anyone with the hope that their advice is going to fix whatever ails us. I’m getting somewhere, I promise.

It seems that there are a few smoking guns when it comes to infertility – diet and toxins that we are putting in our mouth are too big to ignore. Back in our great-grandparent’s time women started having kids in their teens and the AVERAGE age for their youngest child was 42. Plenty of woman got pregnant in their forties and there were no infertility experts back then nor were there petri dishes. Sure there were “spinster aunts” that never had children but the fact remains, the food was cleaner, the soil was full of goodness and pregnancy was far more dangerous to a woman than the items that they placed on their dinner plate. So the point of this FIRST topic on doing your homework is that you can’t trust anyone when it comes to your body. Not your doctor, not the internets, not me – nobody. You have to collect information like a scientist (and that is hard when you are feeling bat shit crazy on lupron) so I get it. I’m going to ask all of you who are struggling or even just starting this process to take a hard look at what you are eating and how you are living your life. Go and get a detailed nutritional panel to make sure you have enough vitamins and minerals in your body to sustain a pregnancy, get your uterus looked at professionally with a hysteroscopy by more than one person – because septums are a leading cause of miscarriage AND they are sometimes hard to spot depending on your cycle. And get a toxin panel (thank you, K) because many of you are running around with a high amount of nickel, aluminum, and all kinds of garbage that will either keep you childless or do damage to your fetus.

Try one little experiment – buy some over the counter iodine and rub a dab on the inside of your wrist(about 3 drops spread over a thin area of skin – about the size of your inner palm) Wait and see what happens. If that iodine disappears within six hours (per Dr. Bhatia of Atlanta) you have a deficiency – you really want to see it after 24 hours. Mind disappeared in 20 minutes. I’ve added a sheet of nori (for making sushi) into my diet and so much has changed. The point is that you cannot get pregnant if your body cannot sustain a pregnancy. Your fetus knows what kind of environment it will enter – a stressful, chaotic one, one in which there is little food for people who went through food deprivation and so on. The evidence is there that your mass of cells can decide if the environment is not a good one – if you don’t have enough folate for its development. So get yourself checked out by a naturopath. Make sure your body has what it needs to support a pregnancy. I’m going to list every single test that you should consider and why. In the meantime, get as clean as you can with your eating. I’ll share resources with you because I didn’t start this blog to hear myself talk – I want to help my fellow sisters (and brothers) in IF and help all of us work together to become parents (no matter how that happens). I’d also like to suggest that you do some research on the HCG booster – the evidence is looming that having an HCG shot prior to a FET primes the uterus to accept a pregnancy.

For those of you with uterine lining issues, write a note in the comments. I know a doctor who will help you build that lining using a drug that works – it is off label for building linings but many REs are catching on (just not fast enough).

I’m going to be posting more because I’m getting ready for potential transfer – but a lot of things need to happen first. I do believe in the power of intention and, on that note, I hope you will keep your thoughts positive and understand how powerful you are and how incredible your thoughts can be..if you believe something negative, you will attract something negative. I promise this happens to me ever single day and to you as well…..

Expect to succeed in this process but first, kick every tire. I’ll help lead you to some great articles and most importantly to the fact checkers, the scientists who are not paid off by Kelloggs or Coca Cola to tell you that something they add to their amazing food products is safe- but one thing – let me know when I am wrong. I have too many people reading this blog daily – literally thousands – looking for hope and advice and I cannot give out bad information. Expect to see a lot more of me – because what I am reading and experiencing is promising for the future and might help one of you. I didn’t go through all those shots and sleepless nights not to give back, and give back I will. Keep fighting the good fight.

What people say and why they shouldn’t….

1. You should adopt and then you will get pregnant.

Yeah – ok your cousin’s best friend’s sister did this TWICE and was able to get pregnant after she wasn’t “focusing” so hard on having a baby.  Um.  Whatever.  Everyone has these stories and while I am glad to hear that things like this do happen – consider a woman who has been through 10 failed IVFs, multiple IUIs and a second trimester miscarriage – I know lots and lots of them.  So please, I know you are trying to be helpful but you aren’t.  You are being annoying and if you tell me that story one more time I am going to punch your head in.  I’m serious.

2. All my husband had to do was look at me and I got pregnant – I’m so fertile

You are very lucky and I wish they gave our medals for such amazing feats!  I worship you!  May I just ask, what does this have to do with me?  Nothing – oh right!  Weren’t you just asking how my fertility treatments were going?  Silly me – I guess you wanted to talk about you!   I’ll let it pass this time but NEXT time I am going to spend the next hour talking non-stop about my e2 levels for each and every day of my last six cycles and exactly what they mean – we’ll go over them in detail and I’ll bore you (hopefully to death).  I also have photos (REAL PHOTOGRAPHY) of my ovaries – that will surely finish you off.

3.  You can have some of my eggs.

You are 40 years old and just because you eeked out one good egg does not mean you are the goddess of all fertility.  In fact, did you know by chance that most of your little eggies are rife with chromosomal abnormalities by the age of 40!?!   To answer your question, no I don’t want your old eggs – I’ve got enough of my own.

4. You can always adopt.

Fuck off.

5. You can always buy a dog.

Seriously fuck off.

6.  My husband has super sperm and that is why I am able to get pregnant.

Good thing too – because he is no fun to look at.

7. If you just relax it will happen.

Good thing I didn’t listen to this particular bit of assvice or I would not have my son.  This bugs me the most.  Let’s have a little biology lesson, shall we?  When you have abnormal sperm meeting abnormal egg it results in either no conception or an abnormal embryo which more than often results in NO PREGNANCY.  When you have one normal egg and one abnormal sperm  – you get the same glorious result.  When you have one abnormal egg and one normal sperm – the same result again!!!  And throw in a few bad timings (normal egg and normal sperm but didn’t get a chance to meet) and a few implantation failures and a few chemical pregnancies….not to mention blocked fallopian tubes, low sperm count, premature ovarian failure, endometriosis, bi-corniate uterus, asherman’s syndrome, etc. etc……please never mention relaxing again.  No amount of relaxation is going to give me (and many women) a child.  That is why were are seeing a doctor!!

8. These days it is really easy for a 45 year old woman to get pregnant – the technology is amazing. Everyone in Hollywood is waiting to have babies later in life.

You need to google “donor egg”, my friend.

9. So many people are having trouble conceiving – it must be God’s way of culling the population.

My friend really said this….I let it pass – it was her birthday!

10. Maybe it just wasn’t meant to be

Thanks, mom.  I’ll get back to you after my therapist appointment.

11.  Are you pregnant yet?

Dickhead – stop asking met his question!  You’ll know when I am pregnant because I will be shouting it from the rooftops.  If I had cancer would you be asking me “hey how is that cancer going”….the answer is hopefully no.

12. So how many embryos did the doctor IMPLANT and doesn’t that mean you could have like sextuplets?

A doctor transfers the embryo into the uterus – they choose whether or not to implant (please get that right because you sound stupid) and no, it doesn’t mean anything.  I tranfered 21 embryos into my uterus to get one little boy.  Think about that.

Ok – time to play with DS – he is finally getting bored with Thomas the tank engine.  I’m not bored (or done with this thread however).  I’ll be back with more nuggets of wisdom from non thinking fertile friends and enemies – oh yeah and FRENEMIES!