Who I Am/My Story

So, this is the traditional part of the blog where the blogger tells her wretched IVF story. And thus, so will I. I hope you don't fall asleep, as it's a long and sad one....

 

Update: IVFC recently posted my story, so if you prefer to read that, here is the link! (it's a bit more updated, but the blog version has more stats/numbers if you prefer that.)

  

Fair warning: I've always had somewhat of a potty mouth, but now I truly curse like a sailor on this blog. If that offends you, you probably shouldn't read my blog. :)

 

Age  29: Go off the Nuva.Ring and start tracking my cycles with basal temperatures, cerv.ical mu.cus and charting. I thought it was so fun, seeing how my body worked, and I was upset that I didn't learn ANY of this when I was younger. Made a mental note to become a sex education teacher in middle schools....I charted for about 14 months, had a ball with it. My periods and ovulations were 100% on track. I visited my ob/gyn, happily clutching all 14 chart print-outs to show her how great my reproductive system worked. Quote, "Oh, you'll be pregnant in no time once you start trying."

 

Age: 30: Lance and I move into a nice, 3-bedroom suburban home. Complete with sidewalks, a "Kids At Play" sign, parks, strollers, etc. Couldn't wait to be a part of all that. We both still worked in NYC at that point. We start trying the month we move in, which also was the month I turned 30 years old.

 

6 months later- nothing. Why wait a year to see a doctor? All (I mean ALL) my friends were getting pregnant right when they wanted to, even ones who had irregular cycles or STD's, none of which I ever had. I go in for an FSH/E2 check. All is well. Ob/gyn recommends a semen analysis because "no matter how much sex you're having, if there isn't any sperm, you aren't going to get pregnant." My doctor is with the Mt. Sinai group, so she recommends the RE group there, called RMA, Reproductiv.e Medicin.e Associate.s. Lance comes back fine, so I get an ultrasound to check for anything physical, and that comes back fine. Last stop on the Chinese menu: An HSG. NOT fine.

 

Looks like the right tube is congested, but left tube is fine. Which is unusual, because if you have a tubal issue, it is almost always 100% bi-lateral (usually due to a silent STD.) The only course of action is a laparoscopy to remove the tube and check out the other one. I would go to sleep not knowing if I would wake up "neutered," as I called it. Scary.

 

I wake up, mumble to the nurse what happened, and she said the left tube was removed, but the right tube was perfectly clear! Even in my anesthesia fog, I knew she must have gotten it mixed up- the right side was the busted side according to the radiologist who did the HSG. The doctor came in, I was in tears, thinking he took the wrong side out and I'd end up on one of those 20/20 shows with Barbara Walters with people talking about surgeons amputating the wrong limbs, etc. Well, it turns out that the asinine radiologist FLIPPED my films, and in fact the left tube was the busted one, indeed. You can bet that I wrote a complaint letter to her boss, to her group, to all professional radiology groups in the U.S. and finally to the New York State medical complaint board. Nothing came of it and I am still pissed about it.

 

The doctor was very happy. My right tube was clean as a whistle; left tube was not a hydro, (filled with fluid), just simply congested; who knows why, perhaps a birth defect. He also did a hysteroscopy while I was under and the ute looked great. I was ready to go. All we needed was some simple IUIs and I'd be on my way. As he said, "We love patients like you- young and a simple tubal problem!" Yep, he said that. (As a side note, it really riles me up that they say to try for one year if you are under 35 years old before seeing a doc. What if you have congested tubes? What if your husband wasn't making sperm? What if you have a uterine septum? You just wasted an ENTIRE YEAR. Secondly, why isn't a vaginal ultrasound part of a women's yearly gyn appointment? I mean, the machine is literally right there- do a frickin' ultrasound each year just to make sure everything is ok, to check if there are ovarian cysts, etc? It boggles my mind why something so simple is NOT done routinely.)

 

We decided on 4 IUIs, and if that didn't work - IVF. I made it to 3 and then lost patience. I am going to spare you the emotional aspects of everything going forward and keep it to the facts, otherwise this will be even longer, which is just ridiculous.

 

Drum roll please....and away we go into a world that sucks you in and spits you out......!!

 

-IVF #1 (RMA-NY)

Low stims; again, I was 30 and had no reason to believe anything was wrong at all. We expected just a plethora of follicles, like serious double digits. Nope, we got 8. Of that, 2 fertilized. WHAT. THE. HELL.

We had to transfer those 2 on Day 3, who the hell knew what would happen if waited to go to blast. Well, it worked....but it was a chemical pregnancy. Devastation doesn't describe it, but I won't go into emotions here.

 

-IVF #2 (RMA-NY)

I need to get  back on the bandwagon immediately. That's how I work things through, how I grieve- keep going. It was torture waiting for the beta to get back down to zero. His idea for me this time was to blast me with their highest amount of stims and do ICS.I to help with the fert rate. There was no discussion if a different protocol may work better, etc etc. I didn't know enough back then to ask. I stimmed for a day or two longer, but got LESS eggs. However, more did indeed fertilize- four. A big whooping four. Only 2 were alive on Day 3, and no surprise, it was a negative. I was done with RM.A after 5 cycles. I don't think they knew what to do with me, and vice versa.

 

Hello Cornell.

-IVF #3 (Cornell)

Luckily, my office was only about 10 blocks from Cornell, so it wasn't that big of a deal for me to get there all the time. I had Dr. Span.dorfer and he took a look at my RM.A charts and had a bunch of ideas, a big one being I was triggered to late. I was also on too much meds at RM.A. Point being- I woke up from my first ER at Cornell and was told they got 18 eggs. Yep, if I could have danced after an egg retrieval, I would have at that point. We did ICS.I, as we always did from then on because we were simply too scared NOT to, but even with ICS.I our fert rate hovered around 50-60%.  We transferred 2 on Day 3, nothing to freeze- positive beta. But....a chemical. Damn.

 

-IVF #4 (Cornell)

Changed to a different protocol, their Anta.gon.  Still got 18 eggs and still got around the same number of embryos. We transferred three this time. Big Old Negative.

 

-IVF #5, Part A (Cornell)

Now what? Went back to the first protocol (long Lup.ron). Really hating life right about now. I had some cyst that grew along with the follicles (never had cysts before) and wouldn't you know it- it popped and caused my P4 to rise, therefore making my lining unusable for a transfer. Any embs we would get would have to be frozen at Day 1 for transfer in the next cycle, like a regular old FET for me (even though I've never had a FET, never making anything to freeze.)  We got a good number of eggs, but only 7 fertilized and were frozen.

 

-IVF #5, Part B

Fast forward a month and we are doing a "natural" FET, meaning we are going with my body's own ovulation cycle since I am so regular. The way Cornell continuously checks your LH to know right before you are about to ovulate is through daily blood draws and urine. So, I had to go to Cornell every single morning to get my blood drawn for 10 days in a row, plus collect my urine 4 times a day in these test tube thingies and bring them in. We finally get the LH surge, and out of the 7 frozens, only 4 survive the thaw, and we decide to transfer all 4. You realize that transferring 4 embryos into a 31 year old is rarely done, but everyone agreed given my history it was totally appropriate. This is why the government can't put caps on how many embryos to transfer, as each person has her own story and baggage. Anyway, this cycle was a negative and Spandie started scratching his head, and brought up using a carrier since "we keep transferring back such good looking embryos, maybe it's the environment." But I thought that Fertility 101 told us that you really can't tell anything just by LOOKING at an embryo, then only way to tell if it's healthy or not is to do some sort of genetic testing. He was totally against PGD for some reason for me. But I had to know if what we were creating were healthy or sick embryos so I could figure out my next steps.

 

Enter...CGH....

 

We fly to Denver, CO to meet with Dr. School.craft of CC.RM. He says what I've been thinking, which there may be something wrong with my eggs, but the tests that exist in 2008 won't catch whatever it is. I'm 10 years too early. But, CGH will at least let us know if we are even making normals. He's fine with going forward, and even a little excited because I am so young and doing CGH. I go back to NY, start BCPs and have my first suppression ultrasound at a local doctor. I have a nice, fat cyst and CC.RM wants me to wait out this cycle. I don't do good with waiting...After meeting with CC.RM, I had learned that both RM.A and SIR.M do CGH. The year earlier I had done a consult with SI.RM in NY to get his donor egg opinion, so I was already in their system and decided to go with them and drop CC.RM- best decision EVER. Waste of a trip to Denver. More money down the IVF Toilet.

 

-IVF #6 (New Hope, in NYC)

I am leaving out a few months of crazy testing for both DH and I (I'll add a section at the end for that.) But of course there was no way I could sit out and wait while we were doing this testing and getting things ready at SIRM for our CGH cycle. Dr. Zhan.g at New Hop.e Fertilit.y does mini/low-stim IVF where he takes the one egg you would ovulate naturally, retrieves it, fertilizes it, and transfers it back. Sometimes he'll use Clomi.d to get max 3 eggs, the idea being that the stims meds aren't good for you and perhaps even damaging the fragile follicles we try so hard to grow. Well, his office was literally across the street from me, I didn't have to take any medications, it seemed like such an easy thing to. The office itself really needs a nice big cleanup, more staff, etc. You have to be on top of all your meds, instructions, etc at any clinic, but here it truly is up to YOU and no one else. They do not use anesthesia during retrievals because they are only taking  a few eggs and we should be able to handle it....right? They give you one Perc.ocet to take, but I did not receive instructions on when to take it, so I brought it with me. Apparently, you are supposed to take it at least 30 minutes before ER. I took it 5 minutes before. I felt everything. It was horrific. I was screaming. It was THE MOST barbaric thing I have ever had to go through, and that includes 7 uterine biopsies.

 

Anyway, we got two eggs, one was immature, the other looked great, fertilized great etc. My beta was a big ol' 2. He wanted me to continue PIO and come back in 2 days; I said no more PIO but I'll come back for another blood test. Zero beta.

 

-IVF #7; SI.RM-NY with Dr. T

Best IVF Clinic in NYC for me. Great lab, great people, they actually CARE about you! They answer the phones!! Holy cow!! Dr. T was (as the others were) very intrigued by my case. He very much wanted to do CGH on my embryos to see how many came back normal. I, however, wanted to view this cycle almost as a very expensive testing cycle- I wanted to test both the polar bodies of my eggs AND test the resulting embryos. Maybe it could give us ac clearer idea if it’s the eggs or the sperm? I was only the 2^nd patient to do this…but it’s a great way to take this existing technology and twist it for what YOU need info for.

 

Had a very long stim on their version of the EP.P protocol, but had a FABULOUS cycle! 13 eggs, so we tested all 13 polar bodies. Then we went to blast, and we had 3 make it to blast. We have never had anything make it to blast before!! There was like magic soup in their petri dishes or something! So, it takes about 5 weeks for CGH results, and I finally got the call- of my polar bodies, 3 were normal. Of those 3 that went to blast, only one was a normal CGH embryo (so what happened to the other two? Was it a sperm issue? Must have been...) I didn’t think having one normal at age 32 was anything to be happy about, but boy oh boy the staff were SUPER excited for me, and Dr. Sh.er himself told me that 1 normal is the average for a 32 year old. I had an amazing transfer, my aunt and mother-in-law were in there with me, we had no reason to believe THIS ONE wouldn’t work.

I go to the office for the beta and am too nervous to go back to work and wait for the call, so I hang out. I see Dr. T come and mention him to me, and I knew it was zero. Again. A CGH normal emb = BFN. So, is it the ute? Let’s do another hysteroscopy to make sure everything is ok in there. He really doesn’t know what to say. He’s just as sad as I am.

 

IVF #8 Donor Egg at Cornell

In the meantime, a year ago after IVF #4, I decided to lie to the Cornell Donor Egg team, and say that Spandie mentioned I may need DE. That way, if/when I needed DE, I wouldn’t be at the very bottom of the list. I decided to contact the DE team and begin the mock cycle to really get this process started, and they can’t officially match you until you complete an entire freaking mock cycle, at a cost of two grand plus medications, of course.

 

Simultaneously, I researched gestational carriers. I wanted to go through an agency so I knew someone always had my back. I did a ton of research and the same name kept coming up, Surrogacy Options. I called them, and I loved them, and we were matched with an awesome Surro, T, out in Denver. We flew out there to meet her and her family, and to be with her for a saline u/s. The plan was to use donor eggs with Mr. Sunshine’s sperm in Cornell, freeze them, ship them to Denver and transfer them to T (it’s illegal to do GC in NY.) We were matched with a great egg donor, she looked just like me, smart, etc. But then she wanted to delay by 2 months to visit her sister..ok, fine…..It’s two months later and she’s been on BCPs and about to start stims the next day. I get a call from Dee at Cornell, and it’s one of “those” calls- a call you don’t like to get. Turns out, egg donor was laid off from her  job and couldn’t deal with donating right now, and she was pulling out. The NIGHT BEFORE. In all of Cornell’s DE history, this has happened four times. I was the fifth.

 

I was so upset, I called T and told her we lost our egg donor. I remember telling her: “T, NOTHING can happen to you. You can not get into a car accident. You can not fall and break a leg, etc etc etc.” Well….the next day she calls me and is so so upset, not sure how to tell me something…just tell me! Her PAP came back positive with early stages of cervical cancer. Holy *@*#@(*$*#(. She’s out- she’s benched for at least four months. She ends up needing two colposcopies, etc etc.

 

So, in 48 hours, I lost BOTH my egg donor AND my surrogate. To quote the Black Eyed Pease: Boom. Boom. Bye.

 

What to do? I said to Dee: I am coming over to your office right now- show me ANY egg donors you have that are ready to go asap and I will chose right from them, right NOW. She had the 4 profiles out on a desk. I went “ennie meenie miny mo.” I actually chose the one that had a similar height as me, that’s it. And yes, ladies and gentleman, that is how I picked my egg donor, usually a process that takes 2 days and many conversations.

We figured we may as well put the embryos back into me since there was no way we’d find another GC in time, get the lawyers and the contracts all done, etc. My period had just ended so it was fine, timing wise. My lining cooperated, and this egg donor was amazing. She gave us 4 blasts, had 2 to freeze. It was a wonderful day.

I knew I was pregnant 8 days later when I spotted a little. I always spot when I am pregnant. What I didn’t expect was how high and strong the betas were, and how on track each ultrasound was, how perfect the heartbeats were. Everything was, perfect. IVF #8 worked, and I was able to carry – it was a lovely ending to this nightmare.

 

I had bought a home Doppler to check on D.I.J. now then, just for a few seconds at a time. At 17 weeks I went to visit my family in Florida for 10 days and I brought the Doppler because my mom and brother wanted to see how it worked. I always found the heartbeat right away. I was getting close to 20 weeks, halfway, getting excited. I was leaving the next day and my mom wanted to hear his heartbeat one more time…so I laid down and placed the Doppler right on the same place I always do, yet I couldn’t find it. I did this for an hour, then said, “Mom, take me to the Emergency Room. Something is wrong with him.” They take you to OB triage (where the stupid person says “Congrats!” to you when they drop you off..ggrrrrr…) and none of the nurses could find his heartbeat either. I kept asking for an ultrasound- that’ll show us in one second what is going on!! They finally called the radiologist down, and he didn’t say a thing. He didn’t have to. I can read an ultrasound screen at this point. Especially when he pressed the heartbeat button and it was literally a flatline….he  was gone. Our healthy, five month pregnancy was gone- 2 weeks after a perfectly normal anatomy scan (where we found out it was a boy.)

 

Hazy after that. Flew back to NYC for the D&E. Not going to discuss that here, too hard.

 

Now what? Has it been the sperm all the time? It certainly wasn’t the  egg, and the placental pathologist found abnormal genetic markers on the baby, so it was either a random fluke or the sperm. Man, could I have gotten pregnant just by doing donor sperm IUIs, for goodness sake?

 

So, we came up with the idea of using PROVEN donor egg and donor sperm. I can carry just fine, had many doctors tell me that, but I am too emotionally scared by everything to ever be pregnant again and I’d prefer to “outsource” it to someone who has done it 4 times before.

 

-IVF #9/SIRM Dallas, TX PART "A"

The surro agency (who I had kept in very close contact with, and they were following my pregnancy) found me a new GC within one week. I don’t even remember much of this, but I do know I loved K the first time I spoke to her. She lived in Dallas, TX and I was thrilled to find out that there is an SIR.M in Dallas. NO. MORE. CORNELL. And so far, it’s been such a pleasure working with people in Texas and not NYC! (Hence our nurse’s nickname of “Sweet Nurse!”)

 

We flew down to meet them, and had an initial appt with Dr. Sa.leh at SIR.M. All was good. They had a great egg donor just cycle through who yielded 7 PGD normals!! And she was a rocket scientist! And she was one of their MOST responsible donors- ever. We booked her, even though we had to wait 2 months for her since she had recently cycled. But it gave us time to get the contracts done, the escrow accounts done, etc etc, all the logistical crap when you are doing all of this.

 

So, the egg donor was due to come in for her first suppression check to begin Lupron and guess what- she's gone. GONE. A few days earlier she wrote to the agency (not the doctor's office) that she had gotten into a small car accident and was held overnight in the hospital for observation, and they made her not take the BCPs she had been on. She wrote that she still very much wanted to donate and did not want to mess up the patient's cycle, and what should she do next. The agency quickly got in touch with SIR.M, and they said it was fine as long as she came in for a scan within one day. (She could get her period and do an Anta.gon cycle.) That was it- no one has heard from her. Both the agency and the doctor's has called, emailed and texted. Lance and I were screwed over- AGAIN. Our first 3 egg donors did something similar to us, as well.

 

My poor GC- she had been on all these meds to get her lining ready and we just told her to stop everything all at once. I was dismayed at the donor agency and contacted 2 other recommended ones. They both have been great and offered wonderful, proven donors to us. Now we're waiting to see which ones will be medically approved by my doctor, where we will be on our timeline, when does my GC start her meds up again, etc. Starting over again. In case anyone is keeping track: This is actually my 3rd surrogate (I found one on my own from a friend; she lived very close to me and things were going well...then I got a text that her Army husband was being relocated to Hawaii in 4 weeks. Buh bye! Then the wonderful TC out in Denver, but we know what happened with her...And now here with K in Texas. This is our 5th egg donor. 9th IVF.) I swear, if this 5th egg donor screws me over, I'm going postal on someone.....Waiting to begin ..

 

IVF#9-B: SIRM- DALLAS with egg donor/sperm donor/GC

The egg donor with SPCT skipped out on me. SPCT refused to acknowledge their mistake and finally, on October 10, I received the $5,500 donor comp check in the mail from them. This had been going on since JUNE 17^th.  Please, please, if you are in Texas and looking for an egg donor or a surrogate- stay away from the Surrogate Parenting Center of Texas in Dallas.  (http://www.spct.org/  ) Don’t let what happened to me happened to you.

 

Conversely, SIRM gave us the name of an amazing donor agency- responsible, young, brilliant, healthy, etc donors, The Donor Solution.  (http://www.thedonorsolution.com/) We had 4 amazing donors and couldn’t chose, so we had fate chose- whichever one was ready to go. She was on the Northeast working on a master’s degree so we flew her in. There was comfort in this since I knew she couldn’t really flake out on me like #1.

 

We had a 100% fert rate with 12 embryos, all 12 still alive on day 5! We transferred 2 and froze 10 blasts. Positive beta, good numbers, good heartbeats! All was finally well with the world.

 

Then I get a phone call early one morning and it’s Kory crying- she had been bleeding and clotting. Scan showed the sac had collapsed and no heartbeat. D and C the next day.

 

Dead baby #4 – and this time IT WAS’T EVEN OUR DNA.

 

IVF #10 (proven donor egg/sperm/ute)

We somehow get ourselves up by our brastraps to try again. Dr. S doesn’t know what to do so he checks Kelly for immune issues via bloodwork (they love immune stuff at SIRM.) Surprise, surprise, she comes back freaking positive!

 

So, we decide to do another transfer of 2 more embs and Kelly will do the Intralipids infusion prior to transfer day. Everything went perfect- her shots, her lining, her E2 level, the transfer, the IVIg, everything…except the part where she had a BFN.

 

What?

 

We heard the news the day before Christmas. No one to talk to about it for a week.

 

 

January, 2010:  Diagnosed with Celiac Disease (completely random, btw- my sister happened to be walking by a tv that had Dr. Oz on discussing how Celiac Disease (C.D.) has a direct affect on fertility, and the symptoms were basically describing me.) Had a bloodtest- positive. Had an endoscopy- positive. Had 8 biopsies taken- all positive. Have had undiagnosed C.D. my entire life and who knows what I’ve done to my body. This is 100% why we had the early losses and of course the terrible 20 week loss- no nutrients were getting into MY body due to C.D., so how the hell could I grow a baby? Such a shame.

 

Starting over- going to try IVF with MY EGGS (collective gasp) DH’s sperm (another gasp!) and a surrogate, as I’m too traumatized by the loss and too scared I’ll eat something with gluten in it and kill another baby….

 

 

..please begin reading the blog posts to catch up from here……

Contact me at: WaitingInSunshine@gmail.com

 

Cast of Characters:

Lance: My husband (aka “Mr. Sunshine”)

Kate:     My mother-in-law, currently living with us

Lisa: My husband’s sister

Kelly:    My gestational carrier; lives in Dallas

Jack:    Her husband (aka "Mr. GC" or as he likes to be known, "Mr. GQ")

 

****Warning: Reminder: I say it like it is, inlcuding bad words.....don't say I didn't warn ya!**

 

 

 

 

  

 

Comments

[Suzanne]

Man. I know most of that but not all of it.

Your spirit in spite of everything just renews good feelings for me toward the world in general.

You really are a special woman and I am soooo rooting for you.
XO

[Dee]

Wow, what a story. I am so sorry for everything that you are going through and have been through.
My story is as follows:
3 IUI's, 1st IVF - no fert, 2nd IVF - BFP, m/c 8 weeks (devastation), 3rd IVF- BFN, 4th IVF with ZIFT - BFN, 5th IVF DE cycle - BFN, 3 donors later - 1 got a blood disease, 1 took the 3 mth contraceptive injection and the other just didnt have a good vibe and we pulled out. 6th cycle coming up in Dec with DE from a friend. Tune in to my blog to see what happens next: www.wheresmy2lines.wordpress.com

[Janet]

***Warning: adoption mentioned.***

Interesting. My response to your "I'm done" post on IVFC was like Lisa's: no you are not. I just wasn't sure that's what you wanted to hear. Come to think of it, given the Ambien situation...well, forgive me if I already said this on IVFC...

When we flew down to Texas to pick up my daughter, I said: "After 8 failed IVF attempts and 2 adoption fall-throughs, this is IT. If this prospective birthmother changes her mind, I am DONE. If only two of us fly back to DC, that's all there will ever be." Bullshit. There could/would have been more trips to meet more babies who may or may not have been ours. However many it took. If someone had asked me, "So you're giving up if this one doesn't work out?" I would have said yes. If they'd pressed me, though--I mean, really really pressed me about whether I was absolutely, positively done, I think I might have eeked out a "no."

Being done is fine. It’s the right decision for a lot of people. I am not judging you--or even encouraging you--either way. I am just saying that, in my humble opinion (and of course it truly is **just my little ole opinion**), you are probably not done.