Freeway FAIL

E and I seem to have bad "Carma". We both take fairly good care of our cars, they're serviced regularly and we always fix or replace things as needed, but they consistently seem to break down at the same time. E's car needed a lot of TLC and has been in the shop for a little while now. It got everything from new gaskets to new tires and just when we thought it was ready to come home, it has to go back into the shop for another tweak. You'd think that would be enough bad carma for one family but you'd be wrong. Instead, my car Sydney joins the foray by breaking down in spectacular fashion.

I was supposed to take grumpy man Zena to the vet today. He was scheduled for a check up and I needed to pick up another bottle of antibiotics for Zuzu (aka Fuckie) that I'd already paid for and had waiting for me. I nabbed Zena with an empty promise of food, got him in his box, and set off with him protesting loudly in the front seat. I would have given him a dish of food but he can be a vindictive pottier and I didn't want him peeing and or pooping in my car, both of which he's done at his last two appointments. Fun times. 

The vet we're currently seeing since our old one closed her doors is down in the Westchester area of Los Angeles. I was driving along, making good time for LA and moving from one freeway to the next, trying to quiet the disgruntled Zena so I could hear my Harry Potter audio book (priorities!), when my battery light comes on. This is super weird, the battery light usually comes on when the battery is dead and the car wont start. I'm driving the car at freeway speeds right now so it's obviously started, but I figure I'd better take the next exit so I can check it out. I start moving towards the right lane from the middle when I notice that my car slowing down Fast, without any input from me. Uh oh.

This would be the second time my car has stopped on this freeway since I bought it. The first time it happened, my oil pan had been punctured by a runaway piece of something that fell off the car in front of me. This time, there was no apparently physical explanation but the same thing happened. The car slowed, I'm fairly sure it was because the engine stalled, I could barely steer and I couldn't use the brakes. I stepped on the brakes as hard as I could, steered for the triangle of space between the right lane and a merging on-ramp, put my parking break on and got the car stopped and in park. Total deja vu.

Once stopped, I made the usual phone calls. E to let him know what happened, Roadside Assistance to get me a tow, my mother who was closest to my location to come get Zena, my Mechanic to let him know I was coming, and the vet to cancel Zena's appointment. Roadside Assistance also contacted the CA highway patrol to send out an officer to make sure my little car didn't get smashed where it stood. LA drivers are not known for their observational skills and I was definitely not on the side of the road. In the time it took to make these quick calls, my car got HOT. Zena was quickly over heating but my power windows were only cracked a bit and I couldn't open a door without risking it being smashed off. When the CHP officer pulled up the first thing I did was ask if we could chill in his air conditioning and he was really nice and happy to oblige.

Although my Roadside Assistance tow truck was on the way, the CHP truck showed up first and elected to get me off the freeway instead of waiting for my truck. Like I said, not the best location to be stopped, even if I wasn't directly in a lane. The CHP officer was nice enough to let Zena ride in his air conditioning while I rode with the tow truck driver and they were able to get me off the next exit and onto a quiet residential street. Thank goodness Zena didn't pee in the officer's car, I was worried but he seemed to hold it together despite being clearly uncomfortable.  A few minutes later my mom showed up to get Zena home and my tow truck arrived to take me to my mechanic. They were able to get my car started, though it did not run happily, and my tow truck followed me to the mechanic to make sure it didn't stall again.

Thus far everyone has different theories as to what went wrong. The tow truck driver thinks it's my alternator, which must have died, causing my car to run off the battery for a handful of minutes before exhausting it and stalling.  E agrees with this theory as well since the alternator makes the most sense. My mechanic isn't sold though, he turned the car on and after listening for a few minutes declared that my car is not firing all of it's cylinders. It's also vibrating really hard at a certain RPM but refused to spit out an error code even though something is clearly wrong. None of that seems like a good indicator of a quick fix, I'm seeing dollar signs already and we won't know more until tomorrow.

It never ceases to amaze me how quickly things can pile up. Here we are, trying to make up our minds about a clinic and gearing up to spend ~40k when both our cars break down. We really don't have the budget to cover expensive repairs or a new (used) car right now. I don't even know what we'd get if we did need a new car. We've talked and talked about getting a nice family car as soon as we're successful with IVF, since both of our cars are fairly small and clearly not super reliable, but what if we buy a big car and our attempts to build our family fail? I'd be stuck with a lovely car with three empty rows to remind me.

I've got everything crossed that whatever is wrong with Sydney is a (fairly) quick and easy fix. Come on universe, we could really use a bone here. 

She's so Fluffy

My Button has a furry little problem. Namely, her long, soft, luxurious, fluffy coat.  She grooms and grooms herself, consuming large quantities of fluff, and then hawks it back up spectacularly all over my floor/bookcase/bed/shoes/the cat tree. Thus far, we've had really good luck managing her hairballs with Vet's Best Hairball Relief Digestive Aids. We can crush the pills into her food, she eats it right up, and her hairball frequency is wonderfully, dramatically reduced.

So why am I even bothering to post? Who cares about hairballs? Well, not too long ago, we ran out. I usually buy the stuff in bulk from Amazon, but we've been out for a month. And in just the few weeks since stopping the pills, she has had several disgustingly spectacular hairball incidents. I had gotten so used to the pills working that I forgot how gross things get without them. Her last "incident" was over a foot of mess. Button's current new theme song is :

I’m so fluffy

You already know

I hawk my hairballs

You never know when I’ll blow

I’m so fluffy

Watch me groom myself

Just made some hairballs

‘Bout to blow 

Sung to the (supposedly?) popular Fancy:

I'm too out of touch with popular culture right now to know what's in, but this chorus has been stuck in my head for weeks and now and all I can hear is hairballs. So if you also have a fancy, fluffy kitty who is prone to hawking partially digested fur all over your floors, give the Vets Best pills a shot. I'm ordering another 8 bottles of the stuff right now.

SCRC in the Running

Yesterday morning we had our consultation with SCRC, our other strong contender for our IVF clinic.  After we ruled out USC I thought we'd be going with HRC, since they came so highly recommended by my acupuncturist, but SCRC made a really, really strong case.

• They do tons and tons of PGD cycles, about 35-55 per month, definitely over 500 per year, and their embryologist, who came to meet us personally, was fantastic. 
• They use Reprogenetics about 95% of the time, and with day 5/6 biopsies, they have a less than 1% rate of inconclusive results - I don't remember if he said it was 0.4% or 0.8% but it was excellent. 
• They use laser biopsy and biopsy in house
• They're only 6-9 minutes from my house which means I don't need to spend an hour in traffic. This is a huge plus, I don't have to leave at 6am for my appointments!
• They don't validate for their structure (negative) but there's a structure just around the corner that will give us 2 hours free.
• The doctor doesn't do my monitoring ultrasounds himself, his tech does them and delivers him the photos and lab work. This is a negative since HRC promises that you get your doctor at every appointment but the tech was very nice and did an excellent job with my scan.
• They would also recommend two cycles and batching our embryos, which seems like a good plan.
• This doctor is of the opinion that when you know something works well, you should attempt to replicate it. Since I responded well to the 10 days of birth control and 8 vial Menopur cycle, he's inclined to follow a very similar protocol 
• They're big supporters of FET and feel it's better to put the embryo back into as normal an environment as possible. I'd be doing a frozen, medicated transfer. 
• Money-wise I'm trying to sort out where they are. There's some issue with billing since they usually bill on behalf of Reprogenetics and we'd need Reprogenetics to bill Kaiser directly. This will be a deal breaker if they won't let Kaiser pay for our probe because that would cost us a lot more money. Other than that, I think they're about $36k for two cycles, including meds, and one FET. Fairly standard among the clinics.

While there I had another AFC done and was pleasantly surprised to see at least 7 lovely antral follicles! It looks like the corpus luteum cysts are gone, though the simple cyst is still hanging around, tiny and unobtrusive on my left ovary.

If we're counting this as a new cycle, we have until around August 20th to make up our minds about which clinic we're going with. I have a call in to HRC to find out how many FET attempts are included in their package and the billing department at SCRC is looking into making our PGD coverage work. I'm really torn now, I think either clinic would be a good fit and there are some strong positives for each one. I have no idea how we'll make a decision!

IVF T-1 Month

For the past couple weeks, E and I have mostly been in a holding pattern. We know what we need to do to move forward, but there are several hurdles in our way. A huge part of the infertility process feels like we're being asked to "hurry up and wait". Waiting for a cycle to start, waiting for follicles to mature, waiting for a PGD probe to be built, the dreaded two week wait. Right now we're waiting for my corpus luteum cysts to resolve and for the next real cycle to start. For now, we need to:

• Pick a clinic. I think we've narrowed it down to HRC or SCRC and we have our consult with SCRC this Friday. This one we need to pay for, which I don't love, but they seem like they could be a real contender. I'm looking for the best PGD doctor I can find so I can handle a few expensive consults along the way. 
• Wait out the withdrawal bleeding from the birth control pills and wait for the next real cycle to start. Whichever clinic we pick, we can't move forward until my ovaries have absorbed the old follicles and I start a real period. Even though my period was only 2 weeks ago, this withdrawal bleeding is like another full period so I'm assuming I have another 28ish days until I start a fresh cycle.
• Pick which PGD lab we're going with. I'm torn between Reprogenetics and RGI, though I suspect both would be good choices. I'm getting genetics reports faxed over and toying around with the idea of Karyomapping, a newer technology for identifying single gene defects in embryos without needing to build a probe. Reprogenetics is using it but I don't know if it's available to the public yet since the genetics counselor didn't seem familiar with it. 
• Sort out funding for a double IVF cycle. All said and done it will probably be close to $40k, and they like their money upfront. 

In the meantime, I've been keeping up with my acupuncture and trying to research our best options. I've had to go to the last two clinic consults on my own so I'm really happy E will be able to join me for the one on Friday. I don't mind if he skips the monitoring appointments since there are sooo many and not much happens, but I do like him to be there for the initial consults and the biggies like egg retrieval. His work schedule is still crazy and he wont get a day off till mid August, but he has some mornings free again which gives him time to make these appointments. We've also got to get Milou into the vet for her yearly vaccines and Zuzu (better known as Fuckie) has a cold that will need another round of antibiotics. We've definitely got our plates full!

Poor Fuckie sleeping off his cold. Yes, he is laying on top of a weight...

One Down, ? To Go

I had my consult for USC today and I'm sorry to say I don't think they're going to be the right fit for us. I absolutely love, love, love my doctor, she's wonderful, but the clinic just didn't really click with me. They don't do many PGD cycles which makes me a bit uncomfortable and they're $4,000 more.  They're also smack in the middle of downtown which means an hour there in traffic and at least an hour back which I would love to avoid if possible. They don't validate their parking which, while it's only $8 bucks each time, is an annoyance that really bugged me. If I'm spending almost $40,000, the least they could do is validate my parking. I wasn't feeling great coming out and their parking structure, which has the stupidest design known to man, kind of sealed the deal for me. There are two levels each named P1, P2 and P3 and I spent 10 minutes wandering around trying to figure out why my car wasn't on P2 when I was damn sure I'd parked it there. It was on the other P2, in the same structure, with no apparent way of distinguishing the two according to the parking attendant I asked -_- It all rubbed me the wrong way.

So that leaves us with HRC, who work with both Reprogenetics and RGI, the two genetics labs we're considering, or another clinic TBD a bit closer to my house. I'm thinking either SCRC or Reproductive Partners. With USC likely out of the running, I feel like I need to compare HRC to at least one or two more clinics before I can be make a decision either way. HRC seems to have a lot of experience even though they're kind of far away and if I could be sure they were the most experienced out there, I would be okay with the distance.

Cycle wise, I still have unresolved corpus luteum cysts from last cycle so I'm stopping birth control and we'll be officially starting IVF in a month. This is probably a good thing, even though we'd like to start ASAP, because it gives us more time to pick a clinic and more time to work on building a probe and getting our genetics stuff in order. I wish each answer didn't come with a hundred more questions but that seems to be how things work in the infertility game.

How To Grade A Clinic

Considering all our issues, E and I need to evaluate our potential fertility clinic a little differently than you might evaluate a clinic if you just needed standard IVF.

For us, and possibly other genetic carriers, I think the biggest questions are:

• How much experience do they have with PGD? How many cycles do they do per year?
• How skilled are their embryologists?
• Do they biopsy day 3 or day 5? 
• What genetics lab do they use and how skilled are they? 
• Would they do a fresh or frozen transfer?
• Have they worked with many patients with our mutation/condition? 
• What kind of protocol would they put me on?
• Do they have a multi cycle program? Will they accept me into it?
• Money - how much will it cost, with all the extra things added?

Thus far we're looking at two different clinics. The clinic my doctor uses, which is smaller and probably more intimate, and a larger clinic that is part of a chain but that does many, many cycles. 

Clinic 1 - USC - My doctor, Dr. K

• How much experience do they have with PGD? How many cycles do they do per year?

They do about 25 PGD cycles every year. Since there is risk involved when you biopsy an embryo, they don't recommend it unless it's needed. 

• How skilled are their embryologists?

They have excellent embryologists but they do not keep an embryologist on staff that does PGD. They use the embryologist from the PGD genetics lab, and they do biopsies all day every day. 

• Do they biopsy day 3 or day 5?  

 Day 5 biopsy

• What genetics lab do they use and how skilled are they?  

They use Reprogenetics, one of the oldest genetics labs out there. 

• Would they do a fresh or frozen transfer? 

Likely a frozen transfer, though it would be at the discretion of the genetics lab, how long they need to get results for my embryos, and my body, am I overstimulated or am I in a good place to transfer the embryos. 

• Have they worked with many patients with our mutation/condition? 

They see about 3-5 patients with my mutation every year. 

• What kind of protocol would they put me on? 

This is still being decided, but my doctor knows how I respond to medication. 

• Do they have a multi-cycle program? Will they accept me into it?

They have no multi-cycle or risk sharing plans, I have to pay for each cycle straight up. 

• Money - how much will it cost, with all the extra things added?

One cycle would run about $16,000 plus $2,400 for biopsy for a total of $18,400 for one cycle or $36,800 for two. This includes $5,000-6,000 for medication each cycle, two biopsies, ICSI twice, anesthesia, and freezing and strong embryos for a year. Kaiser will cover the PGD.

Clinic 2 - HRC

• How much experience do they have with PGD? How many cycles do they do per year?

They do about 500 PGD cycles every year. This seems to be a fairly large number.

• How skilled are their embryologists?

They have 7 excellent embryologists on staff and have pioneered laser technology for embryo biopsy. They do their own PGD biopsy.

• Do they biopsy day 3 or day 5?  

 Day 5 biopsy

• What genetics lab do they use and how skilled are they?  

They use Reprogenetics, one of the oldest genetics labs out there. 

• Would they do a fresh or frozen transfer? 

Likely a frozen transfer, though it would be at the discretion of the genetics lab, how long they need to get results for my embryos, and my body, am I overstimulated or am I in a good place to transfer the embryos. 

• Have they worked with many patients with our mutation/condition? 

I'm still waiting on this answer, but the nurse said all the doctors at the practice get several patients with my mutation every year.

• What kind of protocol would they put me on? 

The doctor wants to review all of my records and see how I responded to my past cycles before suggesting a protocol. Regardless of the protocol, the doctor wants me to complete two cycles and batch my embryos for PGD to give us the best shot at having a healthy baby.

• Do they have a multi-cycle program? Will they accept me into it?

They have a multi-cycle program and although they usually wouldn't because I'm guaranteed to need both cycles if we're batching embryos, they will accept me into it.

• Money - how much will it cost, with all the extra things added?

Two cycles in the mutli-cycle program would cost me about $33,000. This includes an estimate of $5,000-6,000 for medication each cycle, $3150 for biopsy each cycle, $1200 for ICSI each cycle, anesthesia, freezing and thawing embryos and storing them for a year. Kaiser will cover the PGD.

I have absolutely no idea which clinic is the right fit for us. I love my doctor and was inclined to stay with her but the bigger clinic does more PGD cycles per year and is a little bit less expensive.  I'm not sure how I'm supposed to make this decision without ever having done IVF with either clinic. This is so difficult!

Which Clinic??

So after weighing our options,  E and I have definitely decided to go ahead with IVF. I'm on BCP right now in preparation and my next ultrasound is supposed to be the 22nd. I thought everything was decided, taken care of, done.

We were going to go with our current doctor who works both at Kaiser and another fertility clinic. We like her, she's really nice and we've enjoyed working with her. She laughs at my stupid jokes and takes her time during my appointments, I feel like she really hears me.  She allows me to participate in the cycles more than another doctor might, and takes what research I share into account. I was all ready to sign up with her when it was suggested to me that we might want to look at another clinic first.

The primary reasons for this suggestion were:

• My doctor is fairly young, about my age. She just passed her boards and our case is fairly complex. Does she have enough experience?
• My doctor is stretched really thin at Kaiser right now. Two doctors are currently out, one left for private practice so she isn't coming back, and my doctor is picking up all the slack. She's really, really busy.
• Her clinic has no risk sharing programs or multi-cycle programs to purchase. It's just a straight cycle cost and if it doesn't work there's no refund program or guarantee.

The other doctor and clinic we were directed to look at:

• The doctor is world renowned and has like 20 years experience. People come from all over the world to see him.
• The clinic has multi-cycle options but I'd need to get confirmation that I can participate with my premutation. 1, 2, 3 cycle programs and a refund guarantee cycle are all available.

I set up a consultation with the new clinic because I was given a free first appointment card. Interestingly, the new clinic has some pretty crappy Yelp reviews (not that I would ever choose a clinic based on yelp reviews) but I suspect its because they give out many free first appointment cards. Most of them are people whining about it taking too long to schedule their free appointment or the billing department making mistakes. My doctor's clinic, on the other hand, has excellent yelp reviews, from actual patients. My doctor's practice is also smaller than the more experienced doctor, more personal attention? She knows how I respond to medication based on our two IUIs which I really like. Plus, the bigger clinic is a "chain" in that there's more than one location, which I don't love, but it has better statistics. According to their literature, the bigger clinic also does a lot of PGD cycles

I really don't know what to do here. I am going to the free appointment tomorrow so I'm hoping that will give me an idea of how this new doctor practices. Since getting my diagnosis I've lived and breathed fragile x premutations, I've read everything I can get my hands on and I need a doctor who is knowledgeable and committed.What if my younger doctor is more willing to think outside of the box? The older doctor might be less willing to explore new practices. I just don't know which one is a better fit for us.

(Non)Pregnancy Symptoms

I have no idea what it feels like to be pregnant since I've never experienced it first hand, but I can definitely say with confidence that I'm not a fan of the symptoms of being not pregnant. The periods coming off a medicated cycle suck in so many ways, and I feel horrible on this birth control.

I was on birth control for almost 10 years and had a really good fit hormonally. It was a pretty low dose pill, somewhat obscure, and I could take it without side effects and feel good. What I somehow managed to forget was the initial first year of trying to find the right fit. Different pills, different doses, different hormones, months and months of feeling crappy. It wasn't my idea of fun.

Each clinic has prescription agreements with different companies. Kaiser used mostly Ferring, for Menopur, Endometrin, Ovidrel and the current bane of my existence, Sprintec. I asked my nurse about taking my original birth control but she said no, Kaiser only uses Sprintec birth control pills for infertility cycles, which contain a different form of estrogen than my old pills. I am not a fan. I don't know what USC Fertility uses, but thus far Dr. K has kept me on the Sprintec.

Thus far, mixing birth control with coming off a medicated cycle has got me:

• Cramps, cramps and more cramps. These come for free, without the birth control. 
• Insomnia, it's taking me at least 1-2 hours to get to sleep every night. 
• Exhaustion. I feel like I need a nap every day or like I can't wake up in the afternoons, even though I'm still getting a good amount of sleep despite the insomnia.
• Bloating, because it's impossible to escape from. It's a side effect of everything.
• Stomach pain, because I can't escape from that either. Definitely from the birth control now. 

Underneath the annoyance, I'm somewhat amused that I would have more uncomfortable side effects from a comparatively low dose oral hormone medication than from several daily injections containing enough hormones to make an elephant ovulate. I guess it makes sense since we know I'm estrogen deficient and sensitive to synthetic estrogen whereas I seem to respond only grudgingly to mass quantities of FSH and LH. Still, you've got to appreciate the irony.

We're about a week away from my next ultrasound now, so I'm wishing and hoping with everything I've got that the cysts are gone and there are tons of antral follies.