The Saga of Becoming Fruitful

Thoughts After IVF Orientation

DH and I went to the IVF Orientation last Wednesday.

What I liked about it are:
1. They described (albeit briefly) the 4 drug protocols they use for the IVF Stimulation and had timeline schematics that described how each one differed. The timeline differences was clarified for visual-me.
2. That was the perfect opportunity that DH had to get the big IVF picture aside from the information that I have been sharing with him. He did say that the info are pieced together well and he understands the IVF process better now.

What I did not like was that our clinic does not offer CGH yet. Since they do offer PGS and test of 9 chromosomes only, I assume that they ask their provider labs to do FISH. We talked briefly to the embryologist and he said that CGH was “interesting, but it is still very new”. I guess they are more conservative in adopting newer technologies.  DrB did actually mention a couple of times that there is a tendency of “let’s not change this since it is apparently working anyway”.

Since we do want to do the egg CGH, this may mean out-of-state IVF treatment. I can think of 2 challenges for going that route. I am sure there are more but these are what we could potentially be facing sooner:
1. Finding a local physician who is willing and able to collaborate with the out-of-state physician. I could go back to DrH but I am not comfortable with it right now. (She’s nice but I do not know how she will react to our potential plans. I will probably have to think about this more later, if we do proceed out-of-state.) Meanwhile, I have scheduled to go see 2 OB/GYNEs to check them out.

For those of you who are doing/planning out-of-state, what has been your selection experience for a local physician?

2. DH’s paid-time off are already spoken for for almost the rest of the year - 5 days in New York this month (woo hoo vacation!!!) and 3 days forced vacation due to facility shutdown. He seems to get the idea that he cannot do unpaid-time off… He has the assignment to check out if and how FMLA can be used.

For those of you who are doing/planning out-of-state, how does FMLA, if at all, figure into the treatment schedule planning?

SIRM’s IVF Outcome Based Reporting System

As mentioned in my earlier post re More Research About IVF in SIRM, SIRM locations do not report to SART (except for the Dallas, TX location). 2 locations - Las Vegas and New Jersey - report to CDC instead; and the rest, are not listed in SART.

I also mentioned that the SIRM website has an article criticizing the current reporting system for lacking the verifiability of a clinic’s self-reported IVF statistics and for its inability to compare “complex” vs straightforward IVF cases.

Instead, SIRM has the Outcome Based Reporting System (OBRS) which breaks down the stats into Category A-D based on relative categories of complexity (# failed IVF cycles, FSH level, #IU gonadotropin/day, # eggs retrieved) broken down by age. This is useful then when comparing case complexities.

Here is the latest OBRS for 2007-Q1-Q4.

Now, patient-me will try to eyeball where I fall under and what the table is saying…

- I think I am Category A since I have no IVF experience yet and thus no retrieved eggs yet as well. Also, I have FSH 3.5<9 and I needed 150-75<600IU/day Follistim to stimulate me.

- The stats are 58% clinical pregnancies, 8% miscarriages, 57% ongoing pregnancies and 25% multiple pregnancies based on 62 cycles. The average age from the 38-40 yo patients is 38 which means that all those who cycled are 38 years old. So I guess, this is not who I should compare myself to.

- Going worse case to the 41yo column - the stats are 25% clinical pregnancies, 33% miscarriages, 16% ongoing pregnancies and 0% multiple pregnancies based on 12 cycles. Not too different from TFC stats…

……

One disadvantage I see on the OBRS is that live births are not updated even for the earlier years where there is already sufficient time to gather information already.

Also, it is not clear which clinic/s is/are included in the stats. Having OBRS for each clinic could be more helpful for consumers like us.

Eventually, numbers are just that - numbers. Each case will be unique on its own. To me though, it does not hurt to know the numbers!

Whaddaya think?

Detailed SART IVF Stats Comparison

I’ve been looking at IVF stats from SART for sometime now and just like last Saturday’s post, I thought that was it. This weekend was the only time I stared at it long enough to discover that the IVF stats can be sliced further according to the diagnosis of the IVF patients. The per Diagnosis-sliced data was very interesting.

I lined up our known diagnosis to the Diagnosis Types in the SART database:

• Tubal Factor
• Ovulatory Dysfunction - Anovulation
• Diminished Ovarian Reserve - Advanced Maternal Age
• Endometriosis
• Uterine Factor
• Male Factor
• Other Factor
• Unknown Factor
• Multiple Female Factors - Anovulation, PCOS, Advanced Maternal Age
• Female and Male Factors -Anovulation, PCOS, Advanced Maternal Age, Low Sperm Morphology
  

I used 2006 SART IVF data from:

• TFC - Texas Fertility Center
• CCRM - Colorado Center for Reproductive Medicine
• SIRM-D - Sher Institute of Reproductive Medicine in Dallas, TX (since they are the only ones who publish to SART among the various locations of the SIRM. I’m showing how SIRM stats are presented later.)

Anyhow… Using these Diagnosis Types, I went to Select Diagnosis on the upper right corner of the SART stats (under the Diagnosis Frequency). For each of the related Diagnosis above, SART gives the stats for that particular Diagnosis alone. Here are the captured images of each clinic’s start for each of the related Diagnosis.

I summarized what I got from these captured images below:

CCRM had the most patients (91 vs 47 TFC) aged 38-40 years old with potentially related cases as mine. It might be a long shot, but this comparison may mean that CCRM has more experience on cases similar to mine. And perhaps may be able to help me more???

CCRM had the highest % cycles (78% vs 36% TFC) and most number of patients (964 vs 243 TFC) of all ages who had ICSI. This may be an indication of how much ICSI opportunity/experience the embryologists have for the clinics and thus how skillful they are.

CCRM also had the most # of cycles where PGD was used AT 234. Although TFC has 5X more cycles than SIRM-D, they have almost the same # of cylces where PGD was used (about 20). This may be an indication of how much biopsy and freezing/vitrification opportunity/experience the embryologists have for the clinics and thus how skillful they are. This may also be an indication how cutting edge or on top of technology the clinics/labs and doctors/embryologists are.

CCRM has the highest live births per cycle, followed by TFC and SIRM-D

Of course, doing this is tricky because:
1) Without clear knowledge on how each of the SART Diagnosis Types are defined, I am guessing what my diagnosis corresponds to.
2) Unless the SART Diagnosis Types are defined clearly with a common standard reference to be used by different clinics, different clinics may have different interpretation of the SART Diagnosis clinic and thus categorized their cases differently. This would be a major error in assumption when making “apple-to-apple comparison.

This is all I’ve got, so I’m going to use the information for making the comparison anyway. It is better than nothing at all.

More Research About IVF in SIRM

In my “Best” IVF Clinic post last Saturday, I mentioned about wanting to know more about SIRM. So I spent a couple of days exploring the SIRM website. This post contains what I gleaned from all that computer-staring…

This is how they introduce themselves:

LOCATION
Take note that each location is independently-owned. I wonder how much sharing of practice standards goes on really. As for a centralized management system, I wonder why that is necessary if each is independently owned. I noticed that they have set cycle dates per clinic. Could this be in some way related to the centralized management system? Anyhow, here are examples of 2008 Cycle Dates., for example:

SIRM - Dallas : Jan 17, Feb 11, Mar 24, Apr 14, May 5, Jun 9, Jul 17, Sep 2, Oct 13, Nov 10
SIRM - New Jersey: Jan 21, Feb 25, Mar 31, May 5, Jun 9, Jul 21, Sep 8, Oct 13, Nov 13
SIRM-Mosaic:
Las Vegas - Jul 14, Aug 18, Oct 13, Dec 8
New York - Jul 28, Sept 15, Oct 27
SIRM - New York: Jan 21, Feb 18/26, Mar 24/30, May 27, Jul 7, Aug 11/18, Sep 15/22, Oct 27/30, Dec 1
SIRM - Las Vegas: Jul 21, Aug 18, Sept 22, Oct 27, Dec 1

Take note also that SIRM-Mosaic is listed as a separate bullet in their list of nationwide SIRM centers. However, if you look at the addresses , the SIRM-Mosaic center shares the same address as the LV and NY clinics. What is common instead is that Dr Sher goes to both the LV and NY clinics. So perhaps the Mosaic term was added to identify the patients that are being personally seen by Dr Sher? Probably… I’ll find out as I communicate with them more…

Another thing about this multiple locations… If you check SART, only the Las Vegas, New Jersey and Dallas locations are listed in SART. The first 2 locations submit to stats to CDC while the last location submit to SART. The SIRM website has an article criticizing the current reporting system for lacking the verifiability of a clinic’s self-reported IVF statistics and for its inability to compare “complex” vs straightforward IVF cases.

I am not very comfortable with the multiple location thing. Each location may be benefiting from bearing the SIRM name but ultimately, the knowledge, skill, procedures, practices and facilities of each location will vary. So unless the individual location’s stats are published, I would not go to any other clinic. I would go where the motherlode is - in this case, it means the SIRM-Mosaic where Dr Sher is.

I wonder how much SIRM-Mosaic/Dr Sher charges for the IVF procedures compared to the SIRM-NY and SIRM-LV where he shares facilities?

I wonder if Dr Sher is fully booked???

CGH (Comparative Genomic Hybridization)
SIRM shares a lot of information on CGH. (CGH is another method of PGD (Pre-implantation Genetic Diagnosis) which analyzes all the 23 chromosomes, unlike the current standard right now, FISH (Fluorescent In-Situ Hybridization) which tests 5-12 chromosomes only.)

The information they share include their own studies and realistic expectations on this technology. One thing I noticed is an omission of 1 fact in their study that 6 women cancelled because of 0 normal eggs (as tested by CGH). Although it may sound trivial, it does de-emphasize that it is possible to get ZERO normal eggs.

Also ReproCure which does the genetics testing is just next door to SIRM-LV. (I would not be surprised if they are sister companies!) Could cycling in SIRM-LV make it possible to avoid a Staggered IVF???

I am very inspired by Polly’s strategy on Egg PBB1 - I am assuming that is done using CGH since she previously cycled with a SIRM location. (Polly mentioned in her Consult 2 of 3 that CCRM/Dr Schoolcraft said they could do that too (egg PBB1 only) although technically, a PBB2/Blastomere CGH is usually with it.)

I am looking to explore those option as well… still got to talk to DH though!

OBP (Outcome Based Plan)
This is another very interesting thing about SIRM. Here are the relevant quotes from their website:

“The Outcome Based Plan (OBP) entitles qualifying, patient/couples for whom IVF is medically indicated, to a maximum of three (3) completed IVF/ET attempts at an SIRM location . Each complete IVF attempt comprises one (1) egg retrieval procedure and as many embryo transfers (ET’s) using fresh or frozen/thawed embryos as needed to achieve a viable pregnancy or deplete all available embryos, whichever occurs first. ”

“OBP enables women/couples to be reimbursed up to 100% for in-house clinical and laboratory services associated with IVF/ET (excluding medication and anesthesia costs) if the transfer of all embryos does not result in a live birth.”

“Qualifying patients/couples pay the same up front amount regardless of their age or circumstances. The difference lies in the amount that is refunded (refund plan amount) in the event that IVF does not result in the birth of a baby. Patients may apply for outside medical financing of OBP-related IVF services (see below). Since pregnancy rates are profoundly influenced by the age of the woman producing the eggs, the amount refunded in the event that a live birth does not occur is determined by the woman’s age.”

“Over 90% of all IVF candidates would qualify for the OBP, either by using their own eggs or a donor’s. Even severe male infertility, requiring intracytoplasmic sperm injection (ICSI), or testicular sperm extraction (TESE) to obtain sperm in men who have no sperm in the ejaculate, or repeated failure to conceive in another IVF program does not preclude a couple’s eligibility for the OBP. If the woman experiences a first trimester loss, whether through miscarriage or medically indicated therapeutic abortion, the couple is still entitled to a refund.”

I wonder how expensive the OBP is. It does feel better to have a refund if you don’t take home a baby. Will have to get more information though and do the math to see if this is worth what it seems to promise.

Communication and Discussion
SIRM has a Bulletin Board that is open to everyone, not just exclusive to their patients. And the great thing is that the doctors respond to the questions. Well at least that’s who they are logging in as…

Based on my limited sampling of the BB, Dr Sher answers on weekends as well and asks the message poster (presumably his patient) to call him at his cell phone on a Sunday! Yay!

(I just got reminded of the posts I read from other bloggers that the CCRM doctors also makes follow-up calls to their patients.)

……

Alright, that is plenty of information already. I’ve got my thoughts organized on SIRM. Still need to get more specific info from CCRM and SIRM though to make a better decision analysis discussion with DH on Thurday night on this topic!

“Best” IVF Clinic?

In the last ICLW, I noticed a couple of infertility bloggers who are going to Colorado Center for Reproductive Medicine (CCRM). I dug up a bit about CCRM and noticed that their stats show very high percentages of live birth compared to TFC where I am going.

STATS TFC (SART 2006)

STATS CCRM (SART 2006)

With stats like these, CCRM must have a lot of infertility patients coming in for the higher probabilities. They even have a page in their website for out-of-state patients.

Anyway, I commented on a couple of these CCRM’ers a few weeks back but did not hear from any of them until this week (Thanks Christi!) . I was hoping I could ask them more in-depth questions about their experience.

…..

Since digging more into “best IVF clinics”, I have heard of Sher Institute of Reproductive Medicine (SIRM). I checked out their website briefly and it was cool to have their patients chatting in a forum within the website - it sounded like the patients had automatic support system within their month’s cohorts.

SIRM has multiple infertility clinics within the US. I wonder how alike they really are, how best practices are proliferated and where the famed Dr Sher most frequents  - all these and more… I still have to dig into.  The nearest SIRM site to me being in Dallas, TX (3 hours away). However, that specific site’s stats are not comparable vs TFC where I am currently at.

STATS SIRM-Dallas (SART 2006)

…..

I have also stumbled upon Northwest Center for Reproductive Sciences (NWCRS) in Kirkland, WA which has comparable performance as CCRM, but with a lower “sample size” …

STATS NWCRS (SART 2006)

…..

Should I open all the SART stats of the various clinics to find those with >25% live birth for my age group? That’s a lot of work… I don’t like to go there! So… if your infertility clinic has good IVF stats, please sound off and leave me a comment so I can explore it more.

So meanwhile, I will concentrate on learning more about CCRM and SIRM for now.  Also, I will piggy back with Polly (Hi Polly!) on her consult with the top doctors - even if her case sounds more complicated than mine.

AMA is not exactly complicated. It just is what it is… OLD!

IVF Success for the Advanced Maternal Age-d?

Prior to this week, I have not been blogging here since nothing much is going on at the infertility front. No medical activity, that is… but I am continuing to read infertility blogs of my fellow ladies.

Specifically, I have been trolling the blogs of my peers - those of the Advanced Maternal Age category. Or as Mel calls us - “Over 35 and TTC”.

Here are the most significant takeaways I have from all that reading:

• Of the ladies who are of advanced maternal age as I am, I have not read of anyone who had a baby through IVF except Raggedy Ann (and if what I pieced together from her blogposts, she had her boy when she was less than 35 years old). It’s depressing not hearing about “success stories” from my peers.

• I read of some ladies in the comments sections who mentioned that they did get pregnant without medical intervention. How I wish I am one of these ladies. But as you can see, my cycle counter is now at 50 days and my period has not arrived yet. Classic anovulation there for me!

I just want a ray of hope…

Consultation re IVF - REFRAMING (Part 1)

We had our consult with DrH and she was very accomodating. She answered all our questions - I didn’t necessarily like all her responses, but it is good that she didn’t sugar coat it. She said that she would have discussed most of the topics anyway but appreciated the questions I sent in because it gave her an idea where we were coming from.

She said that she wished there were more couples who were more concerned on what would be done to their embryo.  She just gave me some more additional things to dig more on too…

Anyway, I wrote all that I could remember from our consult … yes I forgot the recorder… and writing it down resulted into a very long post, so I am broke it into 3 parts.

OUR INFERTILITY FACTORS
The factors we are facing are Advanced maternal age, PCOS/Anovulation and Low sperm morphology:
- PCOS/Anovulation can be “tricked” by controlled ovarian hyperstimulation (COH).
- Low sperm morphology effect would be minimized with IVF.
- So, the only factor that we cannot do anything about is the advanced maternal age - that determines the egg quality. (I got the usual talk about “women are born with all the eggs for their whole lifetime. As the woman ages, the quality of the eggs “deteriorate”.” In essence, my eggs are old… my raw materials have deteriorated.

Re my 3.5 FSH - DrH said that what it means is that for a 40-year old woman, that was good. However, it still does not compare to a 25-year old woman’s eggs who tests as 3.5 FSH. My eggs are still 15 years older!

WHAT OUR IVF WOULD LOOK LIKE
Since I am a good responder to the gonadotropin, DrH expects to be able to harvest a lot of eggs if I undergo COH in preparation for IVF.  However, she said that fertilization and viability of embryos from eggs of someone my age may not be very good, so just fertilizing a few eggs will not make sense and that the procedure will not be worth it. She also recommends to transfer back 3-4 embryos since the implantation of embryos for someone of my age may not be very good as well. (So that means the “fate” of embryos that are not transferred is a real key question.)

As for typical reasons for IVF cancellation, DrH mentioned 3:
- low stimulation
- overstimulation (typically for younger women)
- ovulated early (or early LH surge)

What to expect with Lupron?
- Before starting, ultrasound to make sure there are no cysts
- Start Lupron. Attend IVF Orientation
- Expect period
- Baseline ultrasound

DrH said that the Follistim dosage she would use for IVF would be at the same level as our 1st Follistim stimulation (that was cancelled) which showed I was a good responder. So instead of the $3K medicine cost estimate, she thinks I would only be using $1.5K worth of meds.

Progesterone is going to be intramuscular (IM) injection…on the butt? on the thigh???. (I was hoping it was just suppository even if it was a bit messier.) Uuuggghhh…

Consultation re IVF - STICKING POINTS (Part 2)

These topics are really the ones that have a lot of sticking points for me…

EGG/EMBRYO FREEZING
DrH also said that egg quality cannot be predicted and since I have old eggs, there is no point in egg freezing. They are able to assess the quality of the embryo through morphology to determine which will be transferred.

I don’t know if I picked up correctly on the discussion on Day 3 vs Day 5 transfer…

If there are only a few good Day 3 embryos, transfer is usually done on Day 3.  If there are more than a few good Day 3 embryos, those can tested for PGD (preimplantation genetic diagnosis) or embryo screening.

DrH clarified that PGD is taken on the Day 3 embryo and results will be in for a Day 5 transfer. (So I am just realizing it now that if PGD is desired, that would automatically mean that it would be a Day 5 transfer - unless there is only a few good Day 3 embryo which forces a Day 3 transfer???)

On what is done to embryo and blasts that are not transferred - they are either frozen or discarded.  They will freeze only those that are judged to have a high chance to survive the freeze/thaw.  They give the blast up to Day 7 (which I suppose would be enough time/chance for the rest of the “lesser” blasts to survive before arresting) and will discard them.

Not sure if I captured that last statement accurately but that sounded a bit harsh… If I may quote from their clinic’s literature - “Only embryos that have fertilized abnormally, stopped dividing or have completely fragmented are discarded.” “Each embryo in our IVF laboratory is treated with the utmost care and respect…” DrH also mentioned that they are actually lean more leniently in judging the embryos to be frozen.

PGD OR EMBRYO SCREENING
DrH said that through PGD, they are able to determine if there are chromosomal abnormality (for 9 chromosome pairs only, not the 23 pairs) in all the embryos. This will isolate which embryos that have normal chromosomes from embryos that have abnormal chromosomes which lead to miscarriage. DrH also said that although PGD reduces the probability of miscarriage, it does not increase the pregnancy/live birth success rates.

The PGD is able to determine the gender of the embryo even at that point. (I read somewhere that there are some who practice gender selection using this method.)

DrH also said that as PGD will not be able to screen all chromosomes and I am of advanced maternal age, she recommends that if I do get pregnant, to have an amniocentesis for all the chromosomes since they cannot screen for Trisomy 21 (causes Downs syndrome) or Trisomy 17 and the like. (I don’t think I will do that since however the baby will be, I will accept. I will not terminate.)

I need to dig more into these.  Please pray for wisdom and discernment that we make a decision that is according to God’s will.

Consultation re IVF - STATS AND RECOMMENDATIONS (Part 3)

STATISTICS
DrH said that normal (fertile) couples chances of getting pregnant are 20% in 1 month, 50% in 3 months, 75% in 6 months.

She said that an infertile couples chance of getting pregnant is still even less than that with IUI - which I have seen different numbers from various websites ranging for 6-17%.

DrH showed us national stats on live births, miscarriages, own vs donor egg  - all by age ranges. She believes though that 40 year old stats are closer to the next age range of 41-42 (than with 38 where it is in the same age range).

She said that their clinic’s stats are generally much higher than the national stats, except for the advanced maternal age where they are still higher than national stats but not much higher.

(I’ve actually seen their stats from SART so I knew what she meant when she made relative comparisons of their stats to the national stats.  Their clinic is by no means the highest in the US though…)

IT TAKES ONE GOOD EMBRYO
DrH mentioned 2 successful advanced maternal age cases.
- One was 45 years old with 20 retrieved eggs that resulted to 19 fertilized embryos. PGD on all embryos showed that only 1/19 was normal and that was transferred. Now that patient has a daughter.
- One was 40 years old who had 1 failed IVF (without PGD). She went for a second IVF and out of the retrieved eggs and fertilized embryos, there was one lone embryo that tested well in PGD and was transferred. The lady’s beta is now being monitored.

OTHERS
DrH echoed back that some studies showed acupuncture to help but she would stay away from herbs.

She said that the meds would have no effect on my breast cysts.  (I still am not 100% on that.)

POSTMORTEM ON RECENT IUI
DrH said that our recent IUI (second Follistim stimulation) was perfect according to her - but it still did not succeed.

Regarding the first Follistim stimulation which got cancelled due to OHSS (did not push through for IUI)… DrH said that it could not be converted into an IVF anymore since that decision should have been made in Day 8 so that antagonists are prescribed in order to convert into IVF. We were already past Day 8 when the impending OHSS was suspected.

DrH also clarified that they make calls until 6pm (only their incoming phones are turned off at 4pm so that they can do their housekeeping and return calls within 4-6pm). So I would have received a call re my results by 6pm.

She also said that she typically has post-mortems after failed cycles.

RECOMMENDED NEXT STEPS
I am on Day 50, so DrH said that when we are ready…. She would give me
- Provera to induce a period
- Skip the usual birth control pills (since I have irregular periods)
- Start me with Lupron
- Then proceed stimulate.

If IVF failed despite high fertilization rate, DrH said that she would not not recommend another cycle of IVF.
If IVF failed and there was low fertilization rate, she would say 2 things - 1) go for PGD or 2) go for donor eggs.

DrH recommended that we go through the IVF Seminar which is scheduled on Oct 8.

LASTLY…
DrH hugged me! I did not expect that but it felt good that she had no qualms on hugging.
DH thinks that mentioning the hug in this post is sooo trivial.  Man, are men clueless…

Well … that’s a lot for now… more data, getting a clearer picture, still need to dig more on specific topics.

Then need to digest info, step back, reflect and weigh, pray and decide.

IVF Indecision is a Decision

I don’t even know if that title makes sense…. but it has been almost a 7-week break…

We have our consultation appointment with DrH on Tue. I hope she received the set of questions and I hope she has read them.

Meanwhile, I have a new friend (who turns out to be a fellow infertile) and she said that sometimes, less options are better.  In our confusion and indecisiveness, I could relate to that because our choices are now boiled down to these 3 -
1. IVF
2. Adoption
3. Child-free

Narrowed down. And yes, there are still 3 options.

I heard something from someone that the “cure to confusion is action. Do something and fail. Or do something and succeed. It removes the ambiguity. Whether you fail or succeed, you are moving forward since you are eliminating alternatives.”

Should we do IVF for the increased probability (still a probability, still not a guarantee) of having our own biological child?

Should we go through what is humanly possible before we accept that our “only hopes” are to either adopt or to be childfree?

Should we make the decision to be child-free NOW (without trying IVF)? And save ourselves from heartbreak and the heavy financial burden? Should I resign myself to the “death of a dream” now?

My biggest fear for the last option is that I will regret not knowing whether we could have had our own child had we tried IVF.  The many “what-ifs”….

We have decisions to make and we are vaccilating up to the last minute.