Decision Made!

After going back and forth a million times, doubting pretty much every aspect of our decision making process, making up our minds and then doubting things again, we've finally made our decision. I'm still not sure this is the right move and I feel a little sick to my stomach over the money we're about to spend, but this is it. Without further ado, we have decided to pursue IVF with....

Southern California Reproductive Center

Ultimately, I think SCRC and HRC would both be excellent centers. A part of our decision ended up being that I can't seem to get the billing department at HRC to call me back to discuss our Kaiser PGD coverage. I really liked Dr. Kolb and I think he would have been a good doctor. However, our PGD coverage will save us about $8,000 and I can't work with a center that won't accommodate that.  They said they'd be willing to work with me, no problem, but then never called me back. That doesn't seem to be a good start to such an important relationship and it played a part in us ultimately choosing SCRC. Dr. Danzer called me after our consult to see if I had questions and has replied to every attempt I've made to talk with him. He's definitely got the personal touch down.

SCRC is also a lot closer to our home than HRC. It will only take us 10 minutes to get to appointments and the staff has been much better about getting back to me. They have an excellent success rate with PGD and are considered a top center here in LA. We're proceeding with the same plan we would have gone with at either center and I officially started the suppression phase this morning. 

Going forward, we're proceeding with:

- The first freeze all IVF cycle with biopsy samples sent to Reprogenetics

- A second freeze all IVF cycle with biopsy samples sent to Reprogenetics

- PGD at Reprogenetics on all embryos 

- A FET with either one or two embryos

I'm hoping against hope that we get lots of wonderful, healthy embryos and that our first FET is successful. In the meantime, there's still a ton of stuff for me to do:

• Apply for Compassionate Care program and First Steps to get financial help.  We were approved for the minimum amount, 5% and 10%, but I'll take whatever we can get.
• Follow up with Reprogenetics. The billing manager needs a letter of agreement from Kaiser but the Kaiser lady has been on Jury Duty and then the billing manager went on vacation Friday to Monday. On Tuesday, both should be back in the office and I should get my letter. 
• I need to order a very large amount of sperm. SCRC wants two vials, Reprogenetics wants two vials, and I'm thinking we should have another two on ice to ensure our donor remains available to us. That's 6 vials for roughly $5,000.
• Meet with the financial adviser at SCRC to officially sign the paperwork and pay the nonrefundable $18,230.00 fee for our two cycles. As the cycles progress, we will pay separately for medication, ICSI (which is required for PGD), PGD biopsy (which includes assisted hatching) and our FET. 
• Submit the paperwork to Reprogenetics. I've been waiting on the letter of approval so I know what my portion will be. I think we're going to pay for the additional chromosome testing.
• Send DNA samples from myself, my mother and my sister to Reprogenetics for the creation of our probe.
• Pay to have two vials of sperm shipped to Reprogenetics for the creation of our probe.
• Pick up and bring two vials to SCRC and pay the $500 storage fee to have them stored there. 
• Pick up and pay for my first round of medication. 

This is such a huge decision. After a lot of discussion we've decided to accept some of the offered financial support from our families. It makes me a bit uncomfortable but if it's what is necessary to have children, it's just something we're going to have to get comfortable with. 

Can you tell how nervous/anxious/ahhh I am? It's like a miniature tornado churning in my insides. I'm not actually worried about the process itself, I'm a pro at injecting myself and the retrieval is just another procedure for me, but I'm terrified that this might not work. I'm terrified we're going to spend $40,000 and not have any viable embryos to show for it. I'm terrified that E will get completely discouraged and we will be done. I'm terrified that maybe he's not ready after all, that he's feeling just some of what I'm feeling, even though we're in this together and he says he's okay. I'm terrified of failing and never having children.

The only thing I can do is cross everything I have, rub every lucky rabbit foot and Buddha belly I come across, project every good vibe/thought/energy I can muster out into the world and hope with everything I've got that my body cooperates and we are able to create healthy, viable, life.

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!