Thoughts on IVF #1 versus IVF #1.5...and a tantrum

I am at a different place mentally with this upcoming IVF than I was last time.

I am not as “gung ho” this time around and a little bitter I might add. I can’t quite place my finger on exactly what has me feeling this way. Maybe reality has set in?   As exciting as I was to start IVF, I'm now seeing that there are more lows than highs on this roller coaster. 

I’m still bitter towards my former Doctor.  I look at the blogs of other ladies who are currently under his care who have the same exact protocol that I had for my IVF and I hope that they have a different outcome than I had. I hope they make it to retrieval…and even better, to transfer. I read their posts and remember how I felt at that time and get excited for them, then I remember my outcome and feel sad for myself.

I'm bitter for what IVF is costing us.  Last night we got a quote for our medications for the next IVF cycle. $3,346.91. I felt sick to my stomach instantly. I feel bad for costing us so much money. This is of course in addition to the $10,964.43 for medical treatment for the next cycle. We called one of the companies offering free meds to see about getting signed up for their program and were turned away because we make “too much money”. That doesn’t mean we can pay for IVF easily by any means. I think we would have to make double what we make to pay for IVF comfortably. It’s so discouraging, especially when you add the stress of “What if this cycle doesn’t work, then what?” or the money we wasted on meds for a canceled cycle last time.

Let me just say also that this IVF financial business of making couples decide up front how many cycles they will need to buy is not nice!  We have to decide between one, two or three cycles and front the money and are out of luck if we get pregnant the first time.  Oh!  And if we want a refund should the plan we choose not work out, well then that will be extra!  Try THOUSANDS extra.  How do we know how many IVF cycles we will need, our Doctor can't even tell us this.  It's a gamble.  Another company playing on the stress and emotions of the infertile.  So, we went with the single IVF, non refund, figuring we would rather just pay another 10K should the this one not work, than get pregnant and be out an ADDITIONAL $8,000.00!!!!!!!!!!  What else do you do?  WTF?  Am I the only one not smoking the crack?  It just sucks.  Pardon my tantrum.

I have to say one positive thing, my husband and I are better now than ever. I worried that the stress of all of this would be a detriment to us but it has had the opposite effect.  I really feel a sense of partnership between us and I am ever grateful for him in this process.

AF, IVF #2

Drum roll please...
Aunt Flo showed up this weekend!  I was at Marshall's doing some bargain shopping when I went to the restroom and actually said out loud "oh goody, oh goody" and clapped my hands when I noticed her arrival!  Yes, two other ladies were in the bathroom, I just couldn't help it!  I really was excited!  I washed my hands, and speed walked over to the men's section where I called out J's name from about 20 feet away!  I ran up to him and told him and we laughed at how silly it was that I was so excited but I think it put pep in our step as we could leave the first cycle behind us and focus on a new cycle, a new Dr., a new start.

So I called our new Doctor, Dr. O and left a message for his secretary telling her the news.  She called back promptly.  We scheduled my trial embryo transfer, and she told me another nurse would be calling with further details regarding my cycle.  In the mean time I called ARC and got the financial side working.  We signed up for a one fresh - one frozen cycle, non refundable.  It's so hard to sign up in advance and decide if we're going to need 2 or 3 cycles and commit that kind of money, knowing full well that we could lose it all if we get pregnant the first cycle.  UGH!  I really wish you could use the remaining cycles if you wanted a second child or something then I wouldn't mind fronting that kind of cash but to gamble with it is so difficult.  The nurse did call me back and went over dates with me. I am excited once again,  I have something to look forward to!  A goal to work for.  The last couple of weeks have been so difficult and hopeless. 

Another Dr. appt

J and I met with Dr. W yesterday for a second opinion after our canceled cycle.  Let me just say how confused I was to walk into the waiting room and see Senior Citizen after Senior Citizen exiting the office.  J and I turned to each other and were like "Um, am I missing something?"  All of the other offices we have ever been to have been straight up infertility offices, this was an OB GYN office that did infertility on the side.  I didn't like this from the get go.  I filled out the forms and the lady at the desk said "______ will be right out to take your urine specimen"  I was REALLY confused.  How is a urine specimen part of our consultation?  J and I were like, "WTF"?  So when the lady called me, J was like "Ma'am, I just have to ask, what is the urine specimen for?"  She said "We do it with every patient, a urine analysis, breast exam and  pelvic exam"  I started shaking my head no and J said "We're just here for a consult, we don't want anything more."  So she went back and talked to the Dr. and brought us back to his office.  My first reaction when we walked back into his office and saw him sitting behind the desk... to turn right back around and walk out.  Just being honest.  The man didn't look like he could tie his shoe let alone make a baby!  He was in no way the picture of health and he later mentioned he is retiring in August! 

Okay, so he hadn't seen any of my previous records.  There seemed to be a communication barrier too because he asked if we had kids.  Oh yes he did.  I nudged J.  Next...literally, I'm not kidding you within one minute of us sitting down he told us I had low ovarian reserve and would need donor eggs.  He had no chart, nothing, just my E2 from our canceled cycle and told us this.  He started asking questions about the dosages I was on for my last cycle so I gave him my calendar with the dosages.  He glimpsed at it, handed it back and asked me more questions about dosages-WHICH WERE ON THE CALENDAR HE JUST HANDED BACK TO ME.  Anyway, he went on to basically tell us a lot of information that was completely opposite from what Dr. O had told us, which made my heart start racing.  Dr. O said he would up the lupron to 20 while Dr. W insisted that we shouldn't use Lupron.  There were other differences too.  Dr. O thought PCOS was the culprit while Dr. W said this had nothing to do with PCOS.  I hate this...two Doctors telling us two different things.  Dr. W then tells us that if we want to proceed with him we have to act fast since he is retiring.  Then, and I have never seen a Doctor do this before, he turns his computer monitor so we can view it and shows us how his clinic is 10th in the nation for women under 35 (using SART).  I felt like he was doing a hard sell for some extra cash before retirement.  J and I noticed in the waiting room looking at his business card that he's not an RE.  I didn't like this after our last non-RE doctor and when J brought it up the Dr. basically said the RE certification came out after he was out of med school. 

All in all, I left feeling confused.  Two Docs telling us two different things, we only have a couple weeks to make a decision.   I understood where both Dr's were coming from in their suggested meds for our next cycle but which to choose.  But the one thing they did agree on that I keeps going through my head is "They both think that Dr. A dropped the dosages of Follistim way to low and cranked them up after he saw my follicles weren't responding." My gut tells me this is the case, maybe I hope it is. 

Dr. W gave me the creeps and I want to use Dr. O.  I put in a request for Dr. O to call us today so we can run the differences in the two Dr.'s conversations past him and get his feedback.  I later looked up reviews on Dr. W and they were TERRIBLE.  1.8 out of 5 on one website and one girl said "I had the creepiest exam I have ever experienced",  "BEWARE"  another reviewer said.  I just know we aren't going to use him, there's no way.  But I do want to run his thoughts by Dr. O.

In the meantime, I have stopped my bcp's and am waiting on AF to show.

Hey Hey Hey

I'm not one that is big into music, I like it but I prefer talk radio mostly because it holds my interest.  J and I went with a couple of friends to the John Mayer concert Saturday night.  He is one of my favorite artists.  Michael Franti (a reggae artist) was opening for him.  I couldn't have told you a song that Michael Franti sings before walking into the concert but I can tell you I am a HUGE fan of his now.  I just downloaded his latest album.  Saturday night during one of Michael Franti's first songs, it occured to me that my embryo transfer would have been that day.  I got sad and sometimes when your sad, music speaks to you.  Michael Franti walked through the audience and stood among the crowd with a wireless mike and asked a packed venue "Who had a rough week this week?"  I raised my hand slightly and thought "Um, me."  He explained that the next song was for anyone going through a rough time...and I lost it.  I concealed my tears but God this song spoke to me.  I pasted some of the lyrics below that were particularly meaningful to me.  Apparently it's a new song and will be on his new record.  You can learn more about him and this song "Hey, Hey, Hey"  here.

John Mayer came on stage.  I was fine and had recovered until he sang "Daughters".  You know that song, "Fathers be good to your Daughters..."  I lost it...again.  I'm not speaking to either of my parents going on six months now.  It's been difficult considering all I have been through with infertility in that time span.  The more he sang of Mothers and Fathers and Daughters the sadder I became realizing the only family I currently have is my brother.  My MIL (Mother in Law) has been fantastic through the last few months and in some weird way I miss my own Mother less because my MIL has filled my own Mothers shoes and then some.  I will dedicate an entire post to my MIL later this week. 

HEY HEY HEY (No Matter How Life Is Today)



By Michael Franti



"I just wrap my arms around
Don’t give up this song is for you"

"Hey, hey, hey, no matter how life is today

There’s just one thing that I got to say

I won’t let another moment slip away"

"I hold on, I’m trying to hold on,
I hold on, hold on, hold on, I hold on"

"There’s a crack in the gutter where a flower grows

Reminding me that everything is possible

Yeah reminding me that nothing is impossible

You gotta live for the one that you love you know

You gotta love for the life that you live you know"

"Until the morning comes again, I will remain with you my friend

And we will ride until the sun, goes to the place where it begun
and we will live to laugh and cry another day"

"Don’t let nobody ever tell you that it couldn’t be done

Don’t let nobody ever tell you that we couldn’t be one

Don’t let nobody ever tell you that it shouldn’t be sung

Don’t let nobody ever tell you you’re the only one"

"Woah oh oh oh, I hold on
Woah oh oh oh, I hold on
Woah oh oh oh, I’m just trying to hold on
Woah oh oh oh, trying to hold on
Woah oh oh oh, trying to hold on"

Finally -Validation for our canceled IVF cycle

Jamie and I met with Dr. O today from Washington University Infertility and Reproductive Medicine Center.  I faxed over all of my previous medical information from Dr. A's office (where we canceled our first IVF cycle).  The Dr. reviewed the records Monday night and I was called Tuesday to schedule an appointment with Dr. O.   His wait is generally two weeks, we somehow got in early.


The beginning of our conversation was basically J and I explaining what brought us to Wash. U.  It's a little hard to believe that less than one week ago we were forging ahead full steam with IVF at Dr. A's office and now we were sitting in another Dr.'s office after a cancellation.  We explained how Dr. A wanted to proceed with our retrieval with two E2's of 113 and 137 last week and 30 follicles.  We explained how J and I basically canceled our own cycle due to research we had done, and how it was really the financial coordinator that told us to cancel, not the Dr.  Unfortunately.


Dr. O looked through our records further and I gave him a copy of my IVF calendar from Dr. A's office.  We went through the calendar thoroughly and noted my E2's, the FSH (follicle stimulating hormone) injections, etc. 

He made some interesting comments. 


1.)  He said that this calendar seemed too much like a "cook book", interesting because I told him I felt Dr. A's office was like a factory.


2.)  He wondered why the FSH started on March 2 at 300 units and then reduced gradually to March 7th only to be gradually kicked back up again.  He said that a lot of times once you start decreasing the dosages to the follicles they stop responding and it's hard to get them to rev back up again even with a lot of meds, and then do you see how on March 10th and 11th I am given 375 and 300 FSH?  He boosted them again!  My follicles weren't doing what he wanted, they weren't growing so he was boosting my FSH after decreasing it to try to get them to respond. 
 3.)  He questioned the lupron dosage and wondered if he would have upped it to 20.  I was on 5.


4.)  He also mentioned that he would not put me on steroids at all, I was on dexamethasone for the duration of my ivf and was told I would stay on it for the first 8 weeks after pregnancy.


5.)  At one point while flipping through the chart the Dr. mentioned how Dr. A's records were not kept as typical Dr.'s offices keep them, there was no flow chart to show how the follicle size, fsh dosages, etc. worked in relation to each other.  All of the notes in my chart were in email format as well which Dr. O found difficult to understand.


6.)  I missed this but Dr. O also said he grinned when he saw the prescription page.  He said that and some other forms were basically taken from Wash U by someone and used by Dr. A's office.  He said he wished they would have taken Wash U's flow charts so he could better interpret our records!  Dr. O said he was going to have someone on his staff translate my calendar into a flow chart so it could be better interpreted which I really liked. 


7.)  Dr. O also asked why didn't Dr. A convert our cycle to IUI after canceling IVF?  With 30 follicles and weeks of medication it seems a shame to waste all of our hard work.  It was never even offered as an option I am sad to say. 


8.)  Finally we got to the point in the conversation where Dr. O would tell J and I if WE had made the right decision to cancel.  He admitted that some women just have low E2's, that's just how it is.  But given my age and with 30 or so follicles he said that he would have been very concerned with an E2 like mine and would have suggested canceling.  I could have cried.  I didn't!  But, I could have.  I looked at J.  Finally, something that made me feel better.  I explained to the Dr. again, that we only had google to make our decision from.   He did say that for some women with breast cancer, etc.  he might have gone forward with a low E2 due to medication but not for the general patient. 


It felt so nice to sit with a Dr. and talk for 45 minutes or an hour, I don't even know.  We had his undivided attention.  As far as when we can proceed.  I explained to him that we were placed on birth control, which seemed to confuse him.  He didn't understand why they didn't just give me provera.  Oh well.  As soon as I start my next period, if we are ready, all I have to do is give him a call and we can start the process again!  We wouldn't have to be placed into a specific months cycle, they do retrievals and transfers weekly.  How refreshing! 

A few things I have learned from all of this:

1.)  I wish I would have done a little more research regarding my first Dr. choice for IVF.  I would have checked to see if Dr. A was certified in Reproductive Endocrinology.  He's not.  He's an OB GYN.  This wouldn't have settled well with me had I known this and I found out after we canceled unfortunately.  I never thought to look to see if the only Dr. at a Reproductive Medical Center was certified in Reproductive Endocrinology! 

2.)  I should have chosen a Dr.'s office with more than one Dr..  I believe in co-workers bouncing ideas off of co-workers and I don't think Doctors are immune from this but rather it is crucial for Doctors. 

3.)  Google may be all we had to use as research and many have scoughed at the idea that we have informed ourselves through the internet, but I will keep Googling.  I believe whether it be another woman's experience or a website dedicated to research, as long as you are selective, you can learn most of what you need to know from Google.

I can't tell you how good it feels to go from a generic one size fits all clinic to a true case by case clinic.  I don't know if we will meet with the other two Doctors.  I think we might meet with Dr. Wilbois as a back up opinion but I feel great about Wash U and Dr. O.  I have peace in my heart regarding our decision to cancel with Dr. A and I have hope moving forward.  Dr. O says we aren't a difficult case at all.  :)  All smiles!

Putting on my big girl panties and moving on...

I feel that this canceled cycle hurt so badly because we didn't even get to have hope.  I so badly wanted to make to to retrieval.  OHSS was what I was worried about with PCOS.  I did everything I could to avoid it and it was my E2 I should have been worried about all along.  We were blind sided the last few days, we didn't even know low E2 could hold our fate.

I came home from the Doctors office and mourned the loss of my daily regiment.  I miss my injections, I miss working toward a goal, I miss crossing every day off my list and looking forward to SOMETHING.  I am mourning the loss of my Doctor, or the Doctor I thought he was.  I called the office this morning and asked to have my records sent to me.  A $15 charge of course, I will happily pay, just give me my history so I don't have to look back.  It feels like a break up.  I was googling RE's in the St. Louis area and just the sight of his name made my heart sink.  I hate the fact that I have to second guess my decision to cancel because our Doctor gave us no opinion, I will always wonder what if.  My husband and I educated ourselves through Google and decided our fate because a man with a medical degree couldn't give us a straight answer.  I hate that the infertility industry is so impersonal that I was written a prescription for birth control to calm my system down, told I would need to have a period on my own and shown the door.  No one will ever call to check in on me or follow up.  It just seems so cold and wrong sometimes.  You trust yourself and your body and your dreams to a staff and a Doctor and then in the blink of an eye, it's over...and it's just business, it was all along.  I get it though, in the end it is their business, I'm just saying it hurts.

For the record, my husband has been my rock through all of this.  As we sat in the exam room, it was my husband that fired all the questions at Dr. A while I sat there in disbelief, realizing we were done and mapping out our next steps.   I need to talk through things to feel better and I brought up our situation many times over the weekend and J was there to listen every time, never once did he tell me to not think about it, he listened.  I feel we have grown closer due to all of this, we have a bond that we didn't have a few weeks ago.  I am so lucky.

For my own sanity, I have to work towards my goal of having a baby even though our cycle is done and I currently don't have a Doctor.  I have spent today researching SART scores and Doctors and making appointments.  I can't believe I am doing this again.  I can't quit.  I know I must get back on the horse that threw me and do this again.  I will carry my records with me, explain our situation and find a Dr. that can help us and one that will give us our best chance with what we now know.

So far, I have three appointments:

Thursday, March 18 @ 9:00 - Dr. O
Monday, March 22 @ 11:00 am - Dr. W   Canceled
Monday, March 22 @ 2:00 pm-Dr. W
Tuesday, April 6 @ 10:30 am - Dr. P Canceled

Cycle canceled

My heart sinks when I type that my cycle was canceled.  I had prepared myself all day and told myself that my cycle would be canceled.  We waited an hour to see the Doctor all while my cycle buddies were being wheeled out in wheel chairs after their egg retrievals.  I wanted to make it to egg retrieval so bad,  I never thought that a low E2 of all things would be what held us back.  I held it together pretty well in the office but broke down and cried on my way home.  J and I drove home separately.  I hate that my poor husband has to go through this, I sat in my car and cried once I parked in our garage at the thought of facing him.  He was so nice as to hide all of the medicines before I got home and greeted me a few minutes later with a glass of wine...I had three.

Let me say that we interviewed three RE's before deciding on Dr. A.  We chose him because his entire staff is said to be accessible by email including him.  We liked that he had a reputation of being sensitive and caring and his success rates were great.  ALL of this came back to bite us in the ass.  The man is so nice that it seems he won't give a straight, honest answer.  His staff doesn't always respond to email and I sat on hold 10 minutes the other day before hanging up after an email went unanswered.  One of the nurses had emailed me to tell me that my E2 level was 137.  I sent an email back saying "What does this mean?"  Wouldn't it make sense to tell me what this means?  What am I supposed  to do with the number?  I'm not a Doctor or a Nurse, I turn to Google. I never got a response back.

Our experience at the Doctor yesterday was less than stellar and I believe we are going to be looking for another RE for a May cycle. The Doctor assumed we wanted to retrieve.  He walked in the exam room and asked me if I was ready for a retrieval this weekend.  "Even with low E2 like I have?" I said.  So we took a look and my follicles had grown but everything I researched told me to cancel.  Dr. A wanted to just go in and see if there were any eggs even though the blood results said no.  If we moved forward to egg retrieval we would lose all of our money ($9000.00) if we backed out now and tried a new cycle we would only lose $300 plus the cost of meds.  The answer seemed obvious, to us anyway not so much for the Dr.  He just couldn't give us any clear information, clear decisions.

Thank goodness for Google.  I researched and researched the day before and found out that my E2 should be around 5000.  Such a low E2 meant that I most likely had no eggs in any follicles.  Most Dr.'s advise to cancel with numbers as low as mine but Dr. A wanted to just see what we get for a whopping $9000.00!  With the odds stacked against us, we just knew in our hearts that we had to cancel.  What upsets me is that our Dr. didn't give us the advice to cancel, we had educated ourselves on this E2 thing and after leaving the exam room we went to see the financial coordinator and she said "If it were me, I wouldn't go through with it, the odds aren't there".  Finally, someone told us what to do-too bad it wasn't our Doctor.  I am just in disbelief that our Doctor didn't understand where we were coming from.  When J brought up money versus our chances at this point in the game our Dr. actually said "you just opened my eyes to all of this"  WHAT?  You mean to tell me Dr. that you have never considered that maybe your patients might be better off to cut their losses and walk away because of odds and money?  I knew we were out of there.  Such a nice man, but I need a Doctor that is going to tell ME (the patient) what to do.

My husband actually said later "Today's appointment was worse than I expected."  I said "Why is that?"  and he said "Because Dr. A didn't give us an answer, he didn't understand where we were coming from."  I agreed.

So, we are now researching the different RE's in the St. Louis area AGAIN.  Trying to do so quickly before May.  We have to look at their success rates and ask them if they have any experience with low E2.  I can't believe we are here again.