Roadblock

I had a terrible morning. The immediate crisis is over, but I feel pretty bad. I'm tired and drained and have a headache. I'm trying to make it here at work for another half hour or so, and then I'm leaving early. I have gotten pretty much no work done today. Zip. I don't even feel that bad. I feel too bad about everything else.

Ok, this is what happened. If you read my last entry, you'll see I was feeling pretty good about my consult with the doctor on Wednesday, and he'd said I could start Lupron as early as 20 days from then, as long as I got access to the egg bank soon and selected a donor. I was feeling pretty excited about having all this done by my birthday in late June. An end seemed in sight. I just want this OVER. I want to be pregnant, I want the sadness to end, I want the constant "wanting" to have a panacea. I know that being pregnant will bring its own worries, but I just want to be there and not here anymore.

So all was seeming good, but then yesterday afternoon the egg bank nurse informed me that I was missing several different lab results. I am not sure what happened, because I had sent them all in last week. Luckily, I have saved everything on my computer, so I was quickly able to email them all to her. Also, there were about 25 pages of consent forms that all had to signed and notarized. I made B quit working and run over ot the bank with me, and we got this all taken care of. Fine. Except not fine, because then the nurse caught that the most recent semen analysis was missing morphology. This is what happened: we had B go in and update his sperm analysis at our second clinic. We'd had him do it July 2011 at our first clinic, but since that was over a year ago, they wouldn't accept it. So he re-did it about two weeks ago. However, our clinic didn't do morphology. There was a big white space instead of the numbers. WTF?? When he called, they were casual- oh yeah, we don't do that unless you ask. WHAT!?!?!? What is the point of a semen analysis without morphology???? We were so upset. We just hoped that his 1 year 10 month old morphology would be okay, combined with the 2 week old total motile sperm count.

But, since nothing ever works out for me, nope. I was informed yesterday that it was not okay. I begged over email for the nurse to ask the doctors, and I was nervous all night long. I was in a sour, bad, nervous way last night.

This morning, I kept obsessively checking my email. Nothing. Finally, I get a link that I have a message waiting in the secure online portal. For an HOUR, I tried logging in. The server was down. I was freaking out.

At last, I get in (after calling) and the nurse says she tried her best, but no, we have to repeat his test so we can get morphology. I just lost it then. We waited weeks to get the last appointment, and it took weeks to get the results (mainly because they were going to email the results and they never did- we had to call when I started worrying). We're already under a pretty tight time frame if we're going to have me start Lupron on day 21 (today is day 3 already). So I just had it with the stress and disappointment, and totally cried and cried in the conference room at work.

I called B but of course he didn't answer, since he was at a conference as usual. I then called my friend K, and she was the nicest ever. She has her own troubles with her (IVF) pregnancy, but she can always make me feel calmer. I don't know what I would have done if she hadn't talked to me. She counseled that I call around and find another clinic that doesn't have a two week wait to even get in. She also reassured me that this could still work, and if it doesn't, it's not the end of the world.

I called my original clinic, and they can get B in on Monday morning. They can get the results back in a week or less. So, it might still work out for us. Maybe. It will be tight, and may take a bunch of more anxious phone calls and check-ins, but IF it really comes back in a week, and IF the egg bank gives us prompt access, and IF we find a good donor in just a few days, then we can start this cycle. Otherwise, we wait another 42 days.

But I can't think of the waiting right now. I have to choose to think positive, that the perfect green eyed, smart, kind donor is already in the bank, or is going to be added the day we get access, and it will all work out.

I don't know why I get so crazy. As soon as something looks like a roadblock, I just lose my shit. I freak out, my pulse begins to race, and I go into crisis mode. You would think after battling infertility for 28 months, I would be more calm by now. Instead, I am more crazy, more neurotic, more convinced that every delay means the world will slow down for me. Instead of learning to accept and learning to be patient, I have learned to be a detail-oriented (you should see my meticulous file folders), non-trusting (of doctors, nurses, my body), possessive (only *I* know what is best- and only *I* can make appointments, gather info, etc.), and otherwise obsessed, driven crazy person.

Okay, even I don't like how I sound anymore. It's 3:46 on a Friday. I think it's time to go home, cook a nice meal, and drink an entire bottle of wine with friends tonight. I deserve it after today.

Ciao,
Crazy Pants

Consult with RBA yesterday

I was so nervous yesterday. I think my blood pressure shoots up when I get nervous, because my head feels buzzy and I get a bit dizzy. But soon enough, the doctor called, and then I was able to focus on that and not my shaky stomach. My phone consult yesterday went really well! The doctor from this clinic was warm, funny, sympathetic, and very careful to answer all of my questions and provide extra information. Of course since this is donor egg, my interaction with anyone at the clinic will be pretty limited, but it's still nice to have liked my new doctor so much.

For the protocol, I'll be on Lupron (uggg) for two weeks (better not talk to anyone- or go out in public at all), and at the end I will start using the estrogen patches. I'll do a baseline ultrasound here at my old clinic, a few days before we go down to Atlanta.The baseline scan will check to be sure my ovaries are quiet and my lining is built up. Then, we'll hop in the car and head down to Atlanta. The day when they thaw the eggs we've selected, I will stop Lupron and add progesterone (he said Crinone is fine- thank god no more P shots). B will give his "sample" and then he's free to leave and come back to NC. We'll put him on a flight and I will stay in Atlanta with a good friend, and with the car so I can get around. On day 3 or day 5 (hopefully day 5), we'll transfer an embryo (or two). Then I can go home the next day. Pregnancy test as usual, on day 14.

And this is maybe the best part: no waiting 6 months to find a donor, since they're all frozen and waiting for me.  In fact, he said since I started my period yesterday (day 43 of my cycle.. sigh), I can start as soon as I want. If I pick a donor in the next week or so, I can start THIS cycle! That means counting to day 21 (today is day 2) and starting the Lupron. I'd then be on schedule to go down to Atlanta around the week of June 7, maybe transfer around June 15.

But, it could take another cycle (40+ days for me), if I don't see a donor I like right away. I should get access to the donor database in a few days... I will be obsessively checking my email till then! I won't rush it if I don't see the right donor, though I am eager to get this started. They add new ones every day, so I'm sure the right one will come along. I'm not even sure exactly what we are looking for... we've been discussing this at length, but I think some of it will just be the one that feels right to us. They currently have 55 donors and he described them as all "above average- in intelligence and appearance." Ha. Not sure about that, but I will be able to see quite extensive info on them, as well as childhood photos, so we can make our own assessments.

The doctor was so nice- he actually casually told me I have "post IVF stress disorder," but he said everyone who makes it to donor egg is pretty much in the same boat). We are paying almost twice as much for this clinic's refund program as if we just paid for one cycle, because we are so terrified that this final attempt still won't work. They have a 60% success rate (live birth rate) per cycle, and after two transfers, an 80-85% cumulative live birth rate, but we're still so scared! So we're doing the refund program, and he said most people end up paying way too much by doing this, but I just don't know.... it's scary to spend so much money, but we're also so scared that even with two perfect transfers, I could still be on the wrong side of statistics, you know? The refund gives us up to 5 cycles... which is probably way more than we'd ever get to, but it feels safer. I think. Maybe I am being paranoid? I can't tell anymore. I just can't tell.

In terms of disclosure, I'm still feeling very tender about all of this. We had the psych consult on Tuesday evening and it was helpful, but I just have huge fears of rejection, both by others and by my child eventually. We plan to tell the child the truth right from the beginning, but I've been limiting who we've told of this decision right now. After all, we don't even know this will work. I worry all the time about whether this is the right move.. I am intentionally separating this (potential) child from 50% of their genetic heritage, and creating a strange new reality for them to deal with. It's going to be interesting. I hope this becomes less of an issue when we are successful. I believe honesty is best for the child, but it should all come from a place of love. We loved each other so much and we love you so much, you were such a wanted child... I plan to read a lot more about how to think and talk about these issues, but I think I will be a good parent and we will all be okay.

As far as specific questions, I'll try to answer them as best as I can. Here we go:

Treatment plan:

·         Scratch biopsy or other prep? Mock cycle? Nope, not necessary

·         Progesterone/estrogen use: Vivelle patch/Crinone progesterone Yup, ok with any form you want- oral, path, shot, etc. I'll use my Vivelle patches and Crinone progesterone because I have leftovers, and found them both not too bad- the Crinone is gross, but better than relying on my husband to give me a shot each evening.   For the donor, he told me they use a Ganerelix protocol, with Lupron trigger. FSH only, most often. He talked a great deal about vitrification- how the eggs are dehydrated, put in ethylene glycol, then made cold (not frozen) with liquid nitrogen. It's pretty interesting, from a scientific perspective. 

·         Birth control pills used? nope- he said we can, but not necessary. either way, Lupron is used (though that can be optional too- but I'll just use it, it's not so terrible)

·         Lining check before transfer? yes- can do at my clinic around here before leaving

Egg bank questions:

·         Does database show how long the eggs have been frozen–the year they were vitrified? yes- in general, the donor # reflects how old the eggs are. if it's lower than 18, it's more than 1.5 years old. if it's 15-18, then it's from 2007 or 2008, or they might be a repeat donor. You can just ask the nurse if you want to know. I figure I'll be watching the database often enough to notice when new donors are added.       For other info- there are 45 donors (55?) and 900-1000 eggs available (16-20 eggs per donor, can that be right?).  He said to look really carefully at the family history. For example, there is one donor who is from a Ashkenazi Jewish background but it does not say that anywhere (her father is not Jewish). But if you read her profile, it says that for her mother and grandma. His point was, check their family history for additional important info on each donor. 

·         Does the length of time the eggs were frozen affect survival and fertilization rates?

·         Have all the eggs in the bank been vitrified in the same way?

·         Is there any risk of choosing eggs that have been frozen in an outdated or little-practiced way?

·         Have all the donors relinquished their legal rights to offspring? Yes

·         Can I ask if the donor is “proven” or is a mother—for each donor in the bank I am considering? They are making a new web interface for the database, which will show this for each donor. It will come out in about 4 weeks. Since I hope to select eggs before that, I can just ask the nurse and she can tell me.

·         I know live birth rate is 60/70%, but what is miscarriage rate after embryo transfer?

·         I am relatively young and would like a second child at some point. What are the chances of having leftover frozen embryos? Unfortunately, I did not really ask this question in an easy to answer way. But I can write down what he did tell me, during our discussion of the regular plan versus the refund program we are interested in (the "Frozen Egg Advantage"). He said to imagine a pool of 100 women using their egg bank. Of them, 80% get at least two high quality embryos from the 6 frozen eggs provided. Of these, 60% end up pregnant or 70% who use two embryos (with half of them getting twins for the double embryo transfer). Of the 40% who end up  not pregnant, 50% of them get pregnant using the other embryo. Overall, in two transfers of a high quality single embryo, there is an 80-85% cumulative pregnancy rate.       So, as I said, I didn't really ask this question very well, sorry. 

·         Does the clinic maintain contact with donors? Health status/issues if they come up for either of us? It's all anonymous. However, he gave me an example- in the late 90s, a donor gave eggs, and then later she committed suicide. Her sister contacted the egg bank. There was no family history, and it had been 12 years ago and the woman had gotten herself in "trouble" or made bad decisions according to the doctor, but the egg bank did contact all the families that had used her eggs to have kids and now had 12 year olds. They were not required to, but they let the families know. All kids are fine so far, no signs of any mental health issues, but the doctor said he felt that it was the right thing to do. So yes, they try to let people know if major things happen later.   Another note- he said that they limit to no more than 10 unique families per egg donor, so the amount of genetic children per donor is fairly limited.

·         Can you tell me about psychological screening done on donors, or health information on the donor’s family? He said they go through extensive psychological testing. They get 150-200 applicants a month, and select only 15-20. They want young women but evidence they are mature enough to go into this fully understanding. Most of them need the money for tuition. He was funny- he said they are all what you'd call "very nice girls." Um, okay. But I get his point. As far as other screening, he said they use GoodStart genetic testing. 

·         How many eggs will be unfrozen for me (I see the contract does not guarantee the two high quality embryos if part of the refund program)? Six. A full six. 

Logistics:

·         When do we pay the 30K? After you select the eggs. To reserve them.

·         What is the “Profile with $500 deposit,” and when do we pay the $500? In a few days- as soon as they contact me to see my profile is complete, all the testing is checked off. 

·         Follow-up (beta, early ultrasounds): no fertility coverage left, but go to fertility center for care? Or can a primary care doc do beta testing? didn't ask. I will just suck it up and go to my clinic here and hope they can code it as pregnancy and not infertility. Sigh.

·         Does guarantee include voluntary termination if it occurs? yes, and miscarriage. It's live birth that counts, for the refund program. 

Timing:

·         Timeline for how soon we can start- do we have to wait till day 20 of a cycle? I have 43 day cycles and just started one, so another 60 days? Can birth control pills used to shorten this wait? Can start on day 21 of this cycle if I select a donor in the next week or so!

·         When will new donors be added? Every day. Check every day. They get snatched up, sometimes in hours. Blonde haired donors disappear. We don't want a blonde anyway, but yes, I will religiously, obsessively be stalking this database.

·         How long would I have to wait between cycles if a cycle doesn’t work? Not at all. Can start again as soon as period comes. 

Next Steps:

·         $500, genetic waiver, consent forms? Because I have all the pre-cycle screening requirements in, all I have to do is wait. They'll contact me in a couple of days, I pay, I get the password. Yay!!!

Questions for consult tomorrow

(with thanks to http://theunexpectedtrip.wordpress.com/2013/04/03/rba-unanswered-questions/ for some of these questions that I stole from her list)

Treatment plan:

·         Scratch biopsy or other prep? Mock cycle?

·         Progesterone/estrogen use: Vivelle patch/Crinone progesterone

·         Birth control pills used?

·         Lining check before transfer?

Egg bank questions:

·         Does database show how long the eggs have been frozen–the year they were vitrified?

·         Does the length of time the eggs were frozen affect survival and fertilization rates?

·         Have all the eggs in the bank been vitrified in the same way?

·         Is there any risk of choosing eggs that have been frozen in an outdated or little-practiced way?

·         Have all the donors relinquished their legal rights to offspring?

·         Can I ask if the donor is “proven” or is a mother—for each donor in the bank I am considering?

·         I know live birth rate is 60/70%, but what is miscarriage rate after embryo transfer?

·         I am relatively young and would like a second child at some point. What are the chances of having leftover frozen embryos?

·         Does the clinic maintain contact with donors? Health status/issues if they come up for either of us?

·         Can you tell me about psychological screening done on donors, or health information on the donor’s family?

·         How many eggs will be unfrozen for me (I see the contract does not guarantee the two high quality embryos if part of the refund program)?

Logistics:

·         When do we pay the 30K?

·         What is the “Profile with $500 deposit,” and when do we pay the $500?

·         Follow-up (beta, early ultrasounds): no fertility coverage left, but go to fertility center for care? Or can a primary care doc do beta testing?

·         Does guarantee include voluntary termination if it occurs?

Timing:

·         Timeline for how soon we can start- do we have to wait till day 20 of a cycle? I have 43 day cycles and just started one, so another 60 days? Can birth control pills used to shorten this wait?

·         When will new donors be added?

·         How long would I have to wait between cycles if a cycle doesn’t work?

Next Steps:

·         $500, genetic waiver, consent forms?

Decision Made

We did it. We decided on RBA, and I submitted the initial paperwork last night and this morning.

I feel terrified at the amount of money we are about to pay. We sat down to think of how we can save money but we didn't come up with any good ideas. We already drive old cars, don't eat out too much other than maybe one moderately priced dinner a weekend, and we don't have cable or drink coffee out each morning. We pack lunches and I cook a lot. Anyway, we have the money, it's just scary to let go of 2/3 of our savings from the past five years or so.

But, what's done is done. If we're going to have a child, this is what it takes.

I'm spending hours and hours every day dealing with getting our medical records and updated testing, and organizing it all, and figuring out what needs to be done next. Luckily it's a three day weekend so I am looking forward to relaxing soon too.

Answers to Questions from Last Post

1. How much info do we get about the donor? Atlanta said 20-25 page PDF including genetic info, and baby photos, but what else? If there are future health concerns, can the donor be contacted by the clinic? Answer: I checked with RBA and they said yes, they keep the donors on file and as long as their contact info remains the same, they can contact them if anything were needed in the future. Their contract also points out that laws may change in the future regarding privacy, and recipients may be allowed to find out more info in the future if legal details were to be amended.
2. If we miscarry or have to terminate, does the refund apply? I read somewhere that success is considered a live baby so miscarriage/termination is included, but I can't remember where I read that, or for which clinic. Answer: Yes, both refer to "live birth" so you can try again until then or until you meet the maximum of 5 (RBA) or 6 (Shady Grove) cycles. 
3. I'd like to know the % of 5 day versus 3 day transfers, and twinning rates? Answer: SG has complex charts to show this, but basically, from 2% if you do a SET on day 5 to 46% if you do a double blast transfer on day 5. RBA has about a 45% twin rate but if I did the guarantee program, I would feel less pressured to do a 3 day or a double transfer so I would hopefully be able to avoid twins.
4. I want to compare chances of having frozens left over with a successful cycle? Answer: With the 1:3 program at SG, 52% of participants have frozen embryos left over, with an average number of two embryos. At RBA, about 50% have frozens left over, and I don't know the average number of embryos. 

Other random things learned:

I do not know how many donors are in the database at Shady Grove, but RBA currently has 56 donors (I think Shady Grove has more). But, they are adding a huge backload right now, and expect to have 100 by the end of April or beginning of May. It will likely take us that long to get our screening done and the consult with the physician, so the timing will work out well for us. 

Other facts of concern about Shady Grove: by going with Shady Grove, there is a chance of cancellation that isn't an issue with frozen eggs at RBA. According to their stats, in the 1:3 program, there is a 4% chance of cancellation if you are recipient one, 8% if you are recipient two, and 19% if you are recipient three. I'd likely be number 2 or 3 since I am a newbie, so that 19% is something to be seriously considered. 

And a concern about RBA: the refund program is not as great as I first thought. I was tipped off by this blog. I asked for RBA's contract and sure enough, the refund is not the whole amount, but the total minus $3K per cycle completed. Also, if you only do one cycle, you forfeit a fee of $16,500. It's strange, but it's in writing. So, worst case scenario, we would lose $15K if we did all five cycles, and $6K or $9K if we did two or three cycles. It's not as good as Shady Grove's but I am somewhat reassured by their high success rates that we wouldn't do more than three cycles anyway, for a max loss of $9K.

I hope that we have time to sit together tonight and make a decision, though I think it's pretty clear how I am leaning. The downsides to RBA remain: the need for both of us to travel to Atlanta is more of a pain than DC, the need for me to miss work for a week rather than just three days (not a huge issue- I have plenty of leave), and the refund program is not as good as Shady Grove's. However, the upside of not needing another HSG (which I think Shady Grove requires, and of which I am terrified, having been traumatized by my first one) and having a significantly higher success rate, as well as being able to start any time and not worry about timing and cancellations, all lead me to the important question: WHAT IS MY END GOAL? My end goal is to get pregnant as soon as I can, with a reasonable refund so we can pursue adoption if this doesn't work. To that end, I think RBA will make the most sense. But I will report back soon, once more things are decided and are set in motion.

More Research on Donor Egg Options

Here is a summary of what I have found out. In the past I have not used identifying information for clinics, but at this point I am sharing it, in case this helps anyone else out there:

Shady Grove (in Maryland):

They have four programs for donor egg. You can split one woman's egg between three recipients, two recipients, or keep them all yourself. Their success rates are good, at 46-47%, though the chances of having frozens left over varies depending on the option you choose. Their chart explains it all. Prices are $14K for the 1/3 program for just one cycle, or $30,500 for up to six cycles and a 100% refund if no pregnancy. This is the option we are leaning towards- splitting three ways but paying double to have the six cycles and refund. The 1/2 program is $18K for one cycle, or $39K for the six cycle refund program. The 1/1 option is $29K or $55K for the refund. They guarantee a minimum of 4 mature eggs per cycle. They also offer a frozen cycle through Donor Egg Bank USA. I don't have price info but they say it's similar to the 1/2 cycle cost.  I think if I did frozens I would just go to the place in Atlanta, which has a higher success rate with frozens. 

My Egg Bank (in Atlanta) (part of RBA):

This might be the one I am leaning towards. It's $16,500 for one cycle, but we are interested in their guarantee/refund plan which offers up to 5 cycles or your money back and is $30K. It would mean staying in Atlanta for 5-6 days (they have deals on hotels). Since all the eggs are frozen, you can start anytime you want. They guarantee a minimum of 6 mature eggs per cycle. Their success rates are impressive to me, at 60% for SET and 70% for two embryo transfer. I want to find out the % of people who have frozens left over, in comparison to Shady Grove's numbers. 

Carolina Conceptions (in Raleigh):

They are local which is easier, and have a good success rate between the other two clinics- at 57.1% according to SART figures. They have around 50 donors so a smaller pool, but no wait because many are ready to go. The last weekend of each month they offer a free look at the donor database (check their website). It costs around $15K for 1 cycle split between 2 recipients. It costs $25-29K for a cycle not shared. You get a 3/4 refund if the donor backs out, and $3K back if no embryos are available for transfer due to egg quality issues (the numbers are higher for the non-shared cycle). They do not have a refund program, so we are not going to go with them. 

Duke:

They have great success rates, the best of all options: 68.4% according to SART. But they told me a one and a half year wait. I cannot wait that long so I'm not pursuing this option.

International egg donor options:

Ummm. I have found plenty about going to Cancun and doing it for cheap, but this scares me. I wish I knew someone who had done it. 

Private agency for egg donors:

A friend through the RESOLVE group did this- she worked with a private agency and then did the process all at Duke. I don't know much about this, but she chose it because she wanted a non-anonymous donation- she wanted her potential child to be able to contact the donor when s/he turns 18. I am meeting with her for coffee on Friday and will get more details. She got 11 embryos but is unhappy because only 3 were great quality. She chose to freeze them because she had some other health issues pop up- not sure about the details. She told me if she could do it again, she'd go with the Atlanta place, though I don't know any more than that. Will get more info Friday.

The questions I still want to ask of the two finalists and compare the answers (Shady Grove and Atlanta frozens): 

1. How much info do we get about the donor? Atlanta said 20-25 page PDF including genetic info, and baby photos, but what else? If there are future health concerns, can the donor be contacted by the clinic? Update: I checked with RBA and they said yes, they keep the donors on file and as long as their contact info remains the same, they can contact them if anything were needed in the future. Their contract also points out that laws may change in the future regarding privacy, and recipients may be allowed to find out more info in the future if legal details were to be amended. 
2. If we miscarry or have to terminate, does the refund apply? I read somewhere that success is considered a live baby so miscarriage/termination is included, but I can't remember where I read that, or for which clinic. Update: Yes, both refer to "live birth" so you can try again until then or until you meet the maximum of 5 (RBA) or 6 (Shady Grove) cycles. 
3. I'd like to know the % of 5 day versus 3 day transfers, and twinning rates? Update: SG has complex charts to show this, but basically, from 2% if you do a SET on day 5 to 46% if you do a double blast transfer on day 5. RBA has about a 45% twin rate but if I did the guarantee program, I would feel less pressured to do a 3 day or a double transfer so I would hopefully be able to avoid twins.
4. I want to compare chances of having frozens left over with a successful cycle?

That's the info I have gathered so far. My goal is to make a decision in the next month and be on our way to making a baby by my 33rd birthday at the end of June. Moving ahead! 

Starting Over: IVF Class

So we went to our new clinic today. I am feeling pretty good about it. I mean, not happy to have to start this all over again OBVIOUSLY, but everyone at the clinic is really, really nice. The class today was so well run, with the whole packet of clear instructions. Afterwards I got to sit down and go over meds and dates. It's SO different and easy and clear, when compared to the mess that was my old clinic. I just can't say enough times how glad I am that we switched. 

Anyway, this is my tentative schedule:

-stay on birth control till Tuesday, February 5th. Go in for baseline that day, and take last pill that night

-start shots on Saturday, February 9th

-monitoring visits on Wednesday Feb. 13th, Friday Feb. 15th, and Sunday Feb. 17th

-retrieval probably sometime Tuesday-Thursday, Feb. 19th-21st 

I will write more about this soon, but for now I am just trying to enjoy life before the hectic schedule of shots and appointments starts again.

New Clinic: Appointment #1

Went in on Friday for day 3 bloodwork and a baseline ultrasound. I'm still not totally clear on why I had to do an ultrasound, since I'm not cycling this time. But the doctor had asked for one, and besides, I always like confirmation that I have no new cysts.

In any case, everything was fine. I had a 7.5 size follicle on the left, and several on the right, with the lead one of 11.5. I did not get a total antral follicle count- forgot to ask, I was so relieved about the lack of cysts. I will ask when I am there tomorrow, meeting with my doctor. It was the nurse practitioner who did the scan on Friday. I really liked her. In fact, everything went pretty well at this new clinic. I only waited 7 minutes from when I arrived till I was checked in and led to an exam room. Everyone was polite. The room was nicer than my old clinic's rooms, with a smaller table to sit on and an, um, smaller sonogram wand. Everything was fast- in and out of there in less than 40 minutes.

No other news. Had a pretty good weekend, and didn't think too much about any of it. Tomorrow is the hydro sonogram. I was terrified of it, and I'm sure I will be nervous tonight, but after the stress of NOT getting my period, I am actually more relieved than nervous.

IVF makes you tough. Most people have sex to get pregnant. I go through repeated painful or at least uncomfortable procedures. Scans, retrievals, transfers, and a million shots and blood draws. To hear women complain about pap smears now makes me laugh. Most people who haven't done this can have no idea, no clue how much it is to go through (and let's not even get started on how much it costs- they fall over in shock at that).

So tomorrow is the hydro sonogram, also called the 3-D sono, and then we talk to my doctor about the results from Friday and the plan to go forward in January. I am looking forward to having these details settled. And then, on Saturday, we leave for our trip! Feeling excited!

Decision

As of last Thursday, I was feeling okay about ARC. Not wonderful, but okay. I liked the doctor and liked her intention to try a different protocol, but the drive is kind of a pain. A lot of time on the highway. Their prices are higher than other clinics, and it bothers me a little bit that the place was so empty. I worry a little about a place that is so new and untested, yet charges so much more than well-established places. I went into the next two consults with curiosity and a bit of nervousness that one of them, or both, would tell me not to waste my time. However, that was not the case.

My consult with Duke was first. I was prepared to not like them, and to not want another big university-based experience. However, I was totally impressed by both the clinic and the doctor. The clinic is near Southpoint and therefore pretty convenient- not as close as my old clinic of course, but I can get there in 20 minutes with no traffic. It's in a free-standing building with plenty of parking right out front, which is also nice and different from my previous experience of having to pay for parking and walk quite a bit (not really something you always want to do after procedures). It wasn't as fancy as ARC, but certainly didn't have the public hospital, slightly grungy feel of my old clinic. I also liked the tea machine  :)

Anyway, I spent only half an hour with the doctor but he answered all of my questions with confidence and with as much certainty as you can possibly expect or hope to hear. He agreed that there is no guarantee, but that it's likely the birth control and Lupron were over-suppressing me. In fact, he scoffed at the fact that I did two cycles on Lupron. He said Lupron is considered good for endometriosis patients, but that with a low responder like me, it's a bad idea. He said that it's an outdated treatment regimen that he hasn't been using for 15 years. He also disapproved of my having the endo surgery, and indicated that it may have caused more harm than good to my fertility. While I don't know, since he didn't see all my surgery records, that was upsetting to hear. He think it is worth one or two more tries, with my age and my great AMH. He predicts I will do at least as well in quantity, but what he really wants to focus on is quality.  He told me that is his goal for me. He will not let me go too long, but trigger much earlier, and he won't have me on such high drug levels. He doesn't need lots of eggs or big follicles, but good ones. I left feeling reassured. He advised me to quit the birth control and come back at the end of next cycle for AMH and FSH testing, and a baseline ultrasound and a water sonogram. We'll see how many antral follicles I have and plan for January. I left feeling calm and hopeful.

The next day, I spoke with the doctor from SG. It's funny, because I expected to not like Duke and to like SG, and it was the total opposite. Whereas I trusted the Duke doctor and felt that he fully and respectfully explained each part of his thinking to me, the SG doctor completely turned me off. He didn't seem to review my records personally, and would not give me the details I politely requested from him. I wanted exact medication recommendations, but he just kept saying, "We'll double what you were on." Huh? I was already nearly maxed out on allowable/beneficial amounts. He recommended another sperm analysis, but I don't see the point since we're doing ICSI regardless. A test won't change our treatment, so why bother? When I politely argued this, he then agreed. But what most upset me was his insistence on a repeat HSG. I had a traumatic first HSG and he said we can do sedation, but that is likely to run me thousands of dollars. I guess Maryland patients have the insurance for this, but I do not. Unless I have a clear and logical explanation for why this is helpful, why would I agree? He would not clearly explain the necessity. Something about leakage from my tubes post surgery could affect implantation... while this makes some vague sense, he did not bother to explain it to me. He didn't seem to want to explain anything to me, but just for me to blindly follow all recommendations. I have come too far and am too experienced to take this attitude, and I am done following doctors without understanding or agreeing. The whole consult made me uncomfortable and upset me, and I was very late to work due to my crying.

Some of why I was crying is not his fault. All three doctors seem to agree that Lupron was not the protocol for me, especially after an unsuccessful first cycle. They all think the surgery may have irreparably harmed my fertility. I am confused by what this all means, and how I may have wasted so much time and emotions and money on what turns out to not have been the best treatments for me. I am upset that I didn't do my research well and went to a clinic with such low success rates compared to the other clinics in my area. I have been through so much heartbreak and stress and anxiety, and it has affected my relationships, my work, my self-esteem, and my friendships. It sucks.

And now I have these large, looming doubts about the HSG. I wonder if it would tell us something, but my guess is that it would not. And even if it showed some obstacle to implantation, would that really change anything? We would still try IVF again, because nothing is ever certain, and we would hope that with increased quality, we'd have a better outcome. Furthermore, I don't think I have it in me to go through all this with SG, without B being with me for a week or more. My mom and dad are great, but being home in my bed, with my kitty and my husband- that's what I need when going through IVF.

I did ask the nurse at Duke to ask the doctor there about an HSG and he reiterated that a water sonogram is what he will do. I would like to ask him about this again, and about implantation factors, when I see him in about a month for the next consult. I know he and the ARC doctor believe it is probably the quality that has prevented implantation, and I keep reminding myself that the HSG is probably not going to change our decision tree anyway. I will try not to dwell on it anymore. K loved her experience at Duke, and that means a lot, and their outcomes are as high, even a slight bit higher, than SG.

Another thing I have decided, in addition to going to Duke, is to buy just one round at a time. Though I intend to try IVF twice more, I do want to see how the first time goes. If it's really lousy or if by some miracle it works, maybe I will be glad I didn't pre-pay for two cycles. Also, if I hate it, I could always try a different clinic. I do not think I'd have the energy to try a third place, but it's always an option. A friend of a friend mentioned the Colorado Clinics. Their outcomes are amazing, like in the 70% success range (versus Duke's 50-ish% and my old clinic's 38%) but so are their prices, and again, there's the issue of being away from home, and even worse, without my family. No, with B's school and work, it's just not an option.


I should get back to work now, but I wanted to give an update. For now, I got my period yesterday, and I'm just supposed to complete a regular, unmedicated cycle. Then I go back to Duke and do the testing, and prepare for a January start. Maybe it's the consults and the upsetting SG talk, or the fact that I got my period , or that B is always busy with school and so I'm alone again a lot, but the past few days have been really hard for me. Although Duke gave me hope, and really all three of them had hopeful outlooks, I do feel pretty pessimistic. I feel that we're going to spend a ton of money and time and emotional output on two more cycles, only to be child-less, poorer, and bitter (in my case, not sure about B). But, I also am not ready to give up. It's a tough place to be in and I am just glad for the break, for Ecuador in December, and for K's unending support and companionship throughout all this. I can't believe that she is moving and I will have to do this on my own in January, but that's another problem to dwell on another day.

First New Consult

The last week and a half have been really busy. I was away for work and to see my dad, and then caught a terrible cold. I came home last Thursday night, really sick, and then had my first consult on Friday afternoon. I was in a bit of a daze due to the head cold, but still went to the appointment of course.

I really liked ARC- I'll just use initials here, but you can probably figure it out if you wanted to. It's a brand new clinic, located in the Brier Creek area. It feels like a spa, all bamboo floors and frosted panes and very calming, and the attention was very personalized and friendly. I liked Dr. C a lot, and the staff (with the exception of the bitchy and confusing financial lady). Downside: it is not cheap. And a real pain to drive to from my house. And untested, as it's new, although both doctors come from Duke and are highly regarded. 

The doctor confirmed that I have a fabulous AMH, equivalent to a 30 year old's, but that in practice my eggs suck. Both in quantity and quality. At least we think they do- I have had such small sample sizes, that it's hard to judge anything much. But the quantity problem is obvious, and the fragmentation is a problem she identified. I am a good candidate for egg donation, as my old doctor was pushing, but this doctor also said she has no reason to recommend against trying the antagonist protocol or flare. I have only ever done Lupron downregulation and that sure didn't work. 

I am officially a "low responder" and limited by my one functioning ovary, so I'm probably just going to waste a ton of money and emotional energy on this, but since when was fertility treatment a rational thing???  I do feel unresolved. As the doctor pointed out, I will walk away after all this with either a baby or the thought that I tried everything I could. She recommends doing an antral follicle count and then choosing which of the two protocols, and taking some time off the pill before beginning in January. She referred to the antagonist protocol as "gentler" and I do have to say I am glad to not have to do Lupron again. She also mentioned human growth hormone, and I want to ask her about assisted hatching, if I do go with ARC.

Anyway, I have not made any decision, and have a consult at Duke on Thursday and a phone consult with Shady Grove on Friday. I am curious as to whether they agree with Dr. C at ARC, or agree with my previous doctor who told me to give it up and try donor eggs. My husband is completely consumed with the business school program he started last month and pretty much absent from this whole process. K has actually been coming with to appointments, which is strange but perhaps the nicest thing anyone not related to me has done. I'm kind of puzzled but grateful to have the support. 

So. I'm doing shitty on paper, but I'm actually not feeling depressed or weepy at all. Amazing what being off the hormones will do for ya. Also we are going to Ecuador for the holidays, just me and B, so I have something fun to look forward to! Then I get to come home and deal with whatever I have chosen to do in January.