All Aboard!

Let's get this train moving... we have some news from RE.  Protocol for our PGS cycles has just been released to my patient portal.  It looks like we'll be doing our baseline appointment on 8/18 and the plan is "Micro Ovidrel Down Reg" which I have never heard of, but I am excited to try it out and see what miracles it might produce for me.  Estimated retrieval week of 9/8.  I won't get my meds list until baseline appointment, and there is nothing about this type of protocol that I can find online.  Has anyone tried something similar?

As I've mentioned before the plan is to do 2 banking cycles for PGS and transfer any normal embryos that we may have come out of that.  If we don't have any "normal" embryos we move into Plan B which is donor eggs and because of all the first-round success with donor eggs I am seeing in blogland I am more and more excited about this which is tempering the amateur genealogist in me who is still mourning a little over the loss of a genetic child.

Toot!  Toot!*  Let's get rolling!!

*That's right... I just tooted...

ETA:  Prescription list is in hand.  More on this tomorrow... I have to actually do some work today.  Ugh...  

I think we've found HER...

Was catching up with a good friend yesterday. She asked how things are going with IVF and I gave her the update - we're doing PGS, possibly moving to donor eggs after that, but struggling to find a donor who matches our main requirements.

She immediately started telling me about her cousin who she has always told me looked just like me. She sent me a pic. This girl is gorgeous! Not as tall as me. I don't think she looks LIKE ME perse but she checks most of the boxes. Over 5'7, curly blonde hair, big blue eyes. 

I have some concerns. Firstly she is 19. I don't know that a decision like this is something she's ready for. At 19 I was a child. Secondly she has a full ride at one of the nations top colleges for her musical talent. I would hate to interrupt that in any way. Thirdly, how do I feel about a "known" donor? 

My friend spoke with her briefly by text and explained our situation and asked if she'd ever considered donating eggs. She replied, "If they needed someone I'd be happy to help! How's life otherwise."  So yeah... I dunno if she thinks my friend is serious. Anyway, I gave my friend my donor coordinators email address. Told her to give it some thought and if she feels able to help please contact my DC who can answer questions, etc. I don't want to have direct contact with her until she has thought this over and made decisions about her contact comfort level, etc. What is the protocol on this?? Can anyone advise? Part of me wants to present her with a brochure of our life - who we are and why we'd be great parents and do the hard sell. But again, she's so young and has so much going on and I don't want to be pushy, but am I being too blasé? 

I don't want to get my hopes up, but y'all she is a better match than I could have ever dreamt of!

Post Lap Surgery

Yesterday went well. I checked in to the small surgery center down the road from my RE's office, stood in the beautiful lobby that reeked of eau de old age home and filled out more paperwork. Answered questions about a living will and no, I don't have children.

Went to the back, filled out MORE paperwork answered more questions... No, I don't have kids. Yes, we're trying.

Anasthesiologist assistant came to ask questions. Yes I've had many surgeries in the past. No, I don't have kids.

Waited for them to send Mr R back and listened to the patients around me answering their questions. 3 other women. All of them in for tubal ligation. "Oh God yes we have kids. That ends today!" "Yep, our last one is 2." 

Finally Dr S comes in and I say, "Jeez doc, bad day for the infertiles to be in surgery! Listen to all the mommies talking about their tubals..." He apologized. I try not to be super sensitive about this stuff, but surgery jitters and all the kid questions... I dunno.

They gave me the pre-surgery happy stuff and I don't remember anything until I came around from surgery. Dr S spoke to Mr. R about the findings. Erg... He is awful with that stuff.  Here's what he remembers... 

There wasn't a lot of endo but he removed it all. I had some pre-polyp tissue which was removed and will be sent for biopsy. Mr R thinks he said my ovaries looked "great". He did a D&C and  closed me up. 

I won't hear from him until 8/26 because he is out of the office in 2 weeks when biopsy will be back.

We're still waiting on our protocol. I'm getting mildly impatient to be honest... Hopefully we'll get this soon. Also waiting on my AMH levels.

Next stop was urologist. What a waste of time that was... We waited, finally got in to see him and he said that he doesn't think he can help us. Yup. $50 copay. Rushing through big city traffic right out of surgery, spending 45 excruciatingly painful minutes in waiting room, followed by fighting to keep a clear mind during the consult only to discover that he met with our RE last week on our case and has decided to refer us to "the best" urologist in the country. The father of urological microsurgery. He feels that a standard vasovasectomy is not going to work in our case, and instead we need to do an epididymis-something-something. Basically, we're going to bypass the vas and reconnect directly into the epididymis.  Avoiding sludge. Tubes are slightly thinner, but we have a 50% chance of an acceptable SA using this method. While still sitting in office with Dr B I called (at his insistence) the new doctor, Dr L, trying to get an appointment. Earliest we can get? 9/25... Holy crap! We requested to be contacted if anything earlier opens up. I'll check in in 2 weeks. Don't want them to forget.

That's it. That's all the news we have. Today I am still in a little pain. Mostly stinging around wound sites. A little cramping but nothing even remotely close to my period pain, so I am fine. 

Lap on Monday

Lap is scheduled for Monday and what a logistical nightmare this has turned out to be. Because of the far drive to our clinic and doctors, and Mr R having run out of vacation and sick days, on top of everything else we're also trying to limit the number of trips we make up there. 

So here's Monday's plan:

0845 - Mr R endocrine blood draw

0900 - pick up pre-op packet from RE office

0930 - Check in at surgery center

1030 - Laparoscopy

0130 - Drive time

0330 - Mr R urologist reversal consult

I'll be waiting in the car for his consult which scares me, but we don't have a choice.

So far so good with the timeline. Now we just need to hope that urologist will schedule Mr R for surgery right away. Ideally I'd LOVE it to be on Fri next, but Friday the following week will be okay. (Hoping it's a Friday so he doesn't have to take any days off for recovery).

So that's it. We're off to the races!

Btw... Still haven't received my schedule or meds list. Dr S is still conferring with his colleagues on the best approach. Take that prefab protocol filed under "Over 35, DOR"! Three days in on 21 days of BCPs, so we have time...

WTF & Next Steps

Today's appointment went well... I think.  Determined not to forget any questions or things I wanted to cover I prepared a 4 page handout for discussion.  Don't laugh.  Okay laugh. It's ridiculous.  (It even had a page titled "Notes" at the back. I smiled from ear to ear when Dr. S turned to it and started scribbling furiously.  Take that Mr. R! Ohhhh how he laughed at me for that page).

Anyway, I didn't want to waste this time dwelling on the "what went wrong" portion of the program, so I jumped right over that and talked about my insurance cover, what we have left, how we've met all our deductibles for this year and what our next plans are.  I explained my reasons for each step and Dr. S seemed very supportive.

So in order here's what we covered:

1)  Vasectomy reversal.

Dr. S says that based on the low motility we're seeing in the TESE samples he's not expecting miracles to occur here, but he agrees with me that there is no reason for that door to remain shut.  You never know what might happen and also... for future attempts - depending on SA results post-reversal - we'll probably be able to avoid TESE either way since we'll only really need fewer than 8 for ICSI, but it does open the door for wildcard IUI tries in the future since we still have cover for this.  He says to go for it, but do it ASAP.

He has ordered an endocrine panel for Mr. R on Saturday.  We have our consult with urologist on Wed next week and we're HOPING to have surgery the week after.

2)  Laparoscopy.

My reasons for wanting this are threefold.  Firstly, I have mild endo and my last lap was 3 years ago.  I want to know that it's gone and won't be a problem for next transfer, for SURE.  Also, I have dysmenorrhea (ridiculously painful periods with hideously heavy flow) and the last 6 months we've gotten to the point where I literally cannot get out of bed for CD 1 and 2, and I only make it through the day hopped up on 4-600mg of Ibuprofen every 2 hours and by assuming labor positions on my knees and arching my back up and down while sobbing hysterically and rushing to the bathroom every hour.  Yes, I know that's a LOT of ibuprofen, but its better than what my OB prescribed -- hydrocodone, which incidentally doesn't work at all!  I cannot go on like this much longer and it definitely got better for a short while after last lap.  And lastly, I figure a lap may double as an endometrial scratch of sorts.  Dr. S doesn't give much weight to endometrial scratching as being beneficial, but it can't hurt so he has agreed to do a lap for me.

They're scheduling me for lap surgery next week.  Will hear tomorrow what day. This is too far out from transfer cycle to be beneficial as a "scratch" replacement I think. Oh well.

3)  PGS Cycles

So here's where it gets pretty up in the air.  We discussed briefly how we feel about outcomes of the Micro Flare protocol.  We both agree that 6 retrieved, 5 mature is pretty close to the top end of what I can expect in any cycle, it's a pity about the fertilization - though to be fair (standing up for my eggs) 3 fertilized out of 5 mature is not abysmal by any stretch of the imagination. If only they'd all keep growing from there!

I've been reading up on the Agonist/Antagonist Conversion protocol (thanks to an amazing friend on TWW forum) designed by the famous Dr. Scher of Las Vegas.  I added a note about it in my handout - didn't mention the good Dr. Scher at all, just the possibility of considering a protocol that focused on keeping the LH low throughout and giving a max dose of FSH on day 1 & 2 of stims, before exposure to LH.  Dr. S read about this and said, "Ah yes, the Scher Protocol.  We've used this in the past and had moderate success with it, but we haven't used it in a while.  It might work here."  I felt REALLY good about him in that moment.  I am SO glad I switched REs in this clinic.  My last RE had a tendency to pooh-pooh any suggestion I made without even considering it.  Dr. S is going to discuss it with his partners (including my other RE) but he feels that given our time constraints, remember everything has to be done by Dec 31 to avoid extra costs, this might be too long for our time line.

He does believe there is still some wiggle room in my max dose of Follistim.  I cycled on 450 last time, and he says he has gone as high as 600 before.  We're probably going to up me this time.

He mentioned a protocol that they've already been discussing for me called Lupron Overlap -- I've never heard of this before, so anyone with experience on this protocol please let me know.  He wants to give this some more thought.

In order to run with our desired timeline two months spent languishing on BCPs is not going to work, so for the second retrieval cycle he is thinking about letting me start right after AF shows up post retrieval #1 without a break BCP cycle.

I start BCPs for first cycle tonight.  He drew an updated AMH today to see if I have continued to improve (see sidebar). Fingers crossed!

4)  Donor Cycle

Now here's where it gets tricky/confusing/tough to plan and honestly we didn't go into this part in too much detail as we'd already gone 45 minutes over my 30 minute appointment.

Two retrievals will already land us somewhere in mid November before we have PGS results -- and this is of course barring any delays, cysts, needing to delay trigger to allow stragglers to catch up, etc.  I haven't had a troublesome cyst yet, I know I am due one.  And last cycle we delayed trigger by 3 days waiting for my slow-pokes to catch up. 

If we get to November and find that we have no viable embryos for transfer we're going to have to rush into selecting a donor, paperwork, etc.  Nevermind stimming the donor, retrieval, etc.  It doesn't seem likely that we'll be able to transfer before the end of the year.

We're hoping that my insurance will be agreeable to starting the donor process before we get results of PGS.  I am a realist, and I know that of the 2-3 embryos we're sending for testing the odds of even one of them coming back normal is very, very low.  If by some miracle we do get one of the expected three back, I am still hesitant to transfer a singleton.  I know everyone has their preferences, mine is a twin transfer every time.  We are fully prepared for twins, we would welcome a twin pregnancy with incredible joy - we would be equally ecstatic if twin transfer became singleton pregnancy. 

So the hope is that we'll be able to select, sign ,and start a donor in November, for ER in December.  This way, IF we have one normal genetic embryo we can still put two back.  One genetic and one donor and freeze the rest of donor embryos for future FETs at a much more affordable price.

What may end up happening is that we end up doing a transfer in the new year.  We're hoping not to have to do this, but transfer only is a much more affordable price tag.  I am pretty sure though, that a cycle started in 2014 will count towards 2014 benefits, even if it is completed in 2015? I have no idea how that will work...

I need to redouble my efforts to seek out a  donor who matches a reasonable set of requirements and is based in or around the Houston, TX area.

I also need to spend an hour with an insurance rep to go into these details.

So there you have it... This post is pretty much verbal diarrhea I am afraid.  I just have to get it all down on paper before I forget it - especially the donor part of the plan.  Dr. S and I didn't discuss it in much detail because we spent much too long talking about protocol options.  This is what I understood from our conversation, but I am hoping to hear from his nurse tomorrow with a schedule and more clarity on the specifics - as far as we can see them from here.  

The (Tentative) Plan

We had a chance to sit and talk last night.  Talk about the cover we are so blessed to have, and discuss how we're going to use this to our best advantage before the year is through and we have to start meeting all our deductibles again.  What helped actually was that we had a call from my mother who had just read my text about the insurance coverage and our options.  She had some advice... she always has some advice and it's rarely the same as what I am thinking...  Her advice to us is to forget about trying again with my own eggs.  She feels strongly that my desire for a biological child is "ridiculous" and "frivolous".  Yep... she used those words.  The fact that they will cover a donor cycle means that they're willing to lay out twice as much as what we're asking for the PGS cycle, and we have a MUCH higher chance of success.  She feels that the money would be better spent on a cycle with better odds.    What helped was that while I was explaining our options to her in minute detail so that she could fully understand what our coverage meant -- I am not originally from this country, and our insurance back home is very different.  Mr. R was standing by as I explained each step, and what the cover meant, and how I felt about our options.  I was not able to make my mother see my position on this, but Mr. R heard me loud and clear.  When I hung up he said, "Baby, we're not giving up on your eggs yet.  Let's give it one more try."

We went over his questions about the two options.  We discussed our cover and he reminded me that while we will most likely need 3-4 retrieval cycles for sufficient blasts to PGS, we only have 4 total IVF cycles paid in full -- including our donor cycle.  We've used 1 already. (Our first cycle was a drug trial).  And if we want to try donor eggs we will need to have at least one IVF saved for that.  There is no way on this earth that we will be able to afford the estimated $26,000 it would cost us out of pocket for a donor cycle.  No way. Ever.  That will be our last try.

We came up with a plan... now of course, this will most likely be thrown around/tossed out after our appointment with Dr. S tomorrow, but I wanted to document it all so I can refer to it if needed.

1)  Vasectomy reversal. This is our top priority.
2)  Retrieval #1, day 5, biopsy, freeze blast/s and freeze biopsy material.
3)  Laparoscopy for my endo (rest cycle)
4)  Retrieval #2, day 5, biopsy, freeze blast/s and send both biopsy's for testing.
5)  IF any normal embryos, transfer frosty/ies - if not, plan B.
6)  Donor cycle.  Plan B.
7)  If donor cycle fails we're HOPING that the vasectomy reversal will prove a success and that we will have the option of IUI which we have unlimited cover for.  But there's a chance that post-reversal SA will come back with very poor, unusable results. This is officially Plan C.
8)  If all else fails there's the tiny, teeny, weeny, itsy, bitsy glimmer of a chance for a miracle unassisted pregnancy created the old fashioned way.  Percentage odds are ridiculously low, but you never know what the future will hold and we're going to move forward holding this hope in our hearts.  Plan D.
9)  While we're hoping for the miracle to end all miracles, we may be able to start saving for an out of pocket donor cycle -- maybe in Europe where donor cycles are slightly more affordable, still... I don't imagine that they're cheap -- so we will need a few years to save for this one.  Plan E.

The reality is that we probably will not have any genetically normal embryos.  Heck, we may not even have enough blasts to send for testing after just two retrieval cycles.  In both my past cycles we only had one embryo that appeared to possibly be able to make it to day 5.  Having just 2 to test does not offer great odds, but it's our only and last chance.  I know that I need this to be able to move on with peace in my heart that I gave me eggs every opportunity.

The reality with Plan B is that even with 22 year old eggs one donor cycle may not be enough for a successful pregnancy, but it's all we can afford to do. (Unless we win the lottery, in which case we'll keep trying and trying until we're successful).

Plan C's sober reality is that after almost 16 years his tubes are probably all gunked up and what comes out will be a mess.  But we've done some reading and we've heard that this can improve over time.  (Mr. R has promised to be vigilant about clearing the tubes out often.  lol)  (No, we don't seriously know if that helps, but he's committed to trying.) And yes, I realize that if IVF didn't work, our odds of success with IUI are very low, but I can't help but hope that we might "catch" a genetically normal egg one month.

We know that Plan D is our "Unicorn" plan. But since we're not willing to give up on a child completely, this will always remain on my list. 

Plan E will mean extending our life of "poverty" to quote my mother as we save furiously for the chance at trying another donor cycle somewhere more affordable.  We will see how tired I am when we get to this point.  Honestly, this extreme penny-pinching lifestyle is really starting to grow old after just 2 years and I don't know how much longer Mr. R will be on board for PB on toast 2 nights a week. We'll see.

So there you have it folks!  My game plan for the rest of this year and beyond.  We'll see how much it changes after appointment with Dr. S tomorrow.

Vasectomy Reversal & An Update

We received awesome news last week! Mr. R called the urologist and asked them to check our insurance to make sure that they do not cover vasectomy reversals.  The kind nurse who has done a lot of digging through our insurance for us to discover that TESE was covered said, "We don't ever check with insurance companies for reversals, none of them cover them.  The cost is $5,000 and the best you can hope for is that they MIGHT cover the hospital portion for the surgery.  You will need to call them for this part."

Mr. R dutifully called our insurance and the woman he spoke with said, "Oh no, we definitely don't cover vasectomy reversals, but let me check on the hospital portion..."  She kept him on hold for what felt to him like an eternity before coming back on the line... "Um... so I looked into it and it seems that we WILL cover infertility reversal surgery 100% and since you've met your deductible that's $0 out of pocket."

Infertility reversal??

Mr. R checked with her several times and asked her to double check with a colleague to make certain that this meant vasectomy reversal.  She came back and confirmed that yes, vasectomy reversal is considered "infertility reversal" and yes, we are 100% covered.

Okay, so I am still well aware that the chance of a "natural" pregnancy -- I hate that term... (what's a better way to refer to an unassisted pregnancy?  I guess unassisted pregnancy sounds better already!) We know that the chance of an unassisted pregnancy is very very low... like tiny, miniscule chance, but at least it opens that door for us every month so we're doing it. Urologist consult is next week.

AF showed up yesterday at last.  I stopped progesterone and estrogen supplements on 11dp3dt.  I called it in to the triage line  yesterday and this morning received a call from my cycle nurse who said, "Okay, so you stopped progesterone 9dp5dt"... uhmmm... we didn't do a 5dt, we did 3dt?  "Oh you did? Okay then..."  HOW does my cycle nurse not know this?  Does anyone else ever feel like their cycle planning is all just a prefabricated sheet that they pull out of a filing cabinet under a tab that has your diagnosis?  Like "Over 35, DOR" and out comes a sheet with a basic plan for micro flare lupron.  Ugh... Well we're moving into uncharted territory now... or rather, we're moving into territory rarely charted by this clinic... so my hope is that now I will have to have an even more customized cycle plan.

She didn't sound enthused at the idea of a reversal and thought it was unnecessary, but advised me to discuss with my doctor. That's fine.  I know what they're all going to say, but we're doing this anyway.

She advised me that my RE can do a laparoscopy for me and that there is no need for me to go through my OB GYN for this.  Probably a better idea so that he can time it to match my cycling.  But their surgery facilities are out of network and so we will have to pay for that out of pocket -- whereas my OBGYN surgery is IN network and would be free.  (ALWAYS money isn't it...)   Strike this, see below... just had a call from our finance rep and we're pretty sure that we've met our out of network deductible too at this point, so there won't be any difference cost-wise.  Better then to do the lap with my RE so we can time it in with my cycling.

She says that I will need 6-8 weeks post laparoscopy for my lining to repair enough for transfer... but I mentioned that with banking embryos this was a non-issue, at least for 2-3 retrieval cycles.

She also said that we cannot do back-to-back retrievals as the risk for cysts is increased with the constant stimming.  I would need to do a stim cycle, rest cycle, stim cycle, rest cycle, stim & transfer cycle -- if we have any to transfer. So we're looking at transferring in or around January 2016... maybe.. depending on how much of the PGS stuff is out of pocket and how my 100% insurance coverage for IVF will work with stim-only cycling.  Back to money again... *Sigh*

So that's where we stand right now... will know more after WTF appointment on Wed about how we're going to proceed.  Mr. R has run out of sick/vacation/personal days at work and so he will be taking an early lunch to join us by phone for the consult... it sucks that he can't be there, but it's the best we can do without jeopardizing his crappy job that comes with awesome insurance.

That's another thing... Mr. R accepted this job as he transitioned out of law enforcement and completed studies for a new career.  The work is menial, the hourly wage is deplorably low, his colleagues are (mostly) insufferable... but as we've discovered the insurance kicks butt!  He will need to tough it out a bit longer until we can figure this out.

Just had a call back from my clinic's financial services:

PGS
IVF: We've now met in network deductible so this is free
Facility Fees:  We've met our out of network deductible (though it's not yet reflecting) so this SHOULD be free, but worst case $1,500 for each of us for retrieval and TESE
(PGS requires a medical review and approval on a case by case basis.) 
Biopsy: My clinic fees for biopsy - $2,750
3rd Party Lab:  $3,000-5,000 (Shady Grove Testing in Maryland)

My clinic will require $2,750 biopsy fee paid up front.  I deal directly with 3rd party lab on their costs.

Donor Eggs
IVF Me:  100% cover
Facility: Most likely free, but possibly $1,500
Donor Services (everything including meds):  Verbal confirmation that this is covered 100%.  My clinic requires confirmation in writing.  IF they don't get written confirmation this portion ALONE is $16,000 but it looks like everything for me and Mr. R is covered at this point. We can expect written confirmation or denial in 2-3 weeks.  Our financial rep is submitting the written request today.

Money. Money. Money. Money.