Journey through infertility ain’t easy nor cheap. Still, God is good…

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.

I listed the questions I have for DrH when we meet with her on 9/23.

I prefer to have my answers earlier but they do not have emails. They do not do phone consultations also. So instead, I plan to mail this list to them or drop them off at their clinic next time I am around their area.

Some of the questions are really hypothetical but I want to ask them anyway as it would be indicative of their situational response.

Reframing our case:
1. Which among our previous IF factors are still at play in our case that we are up against?
2. What is your IUI statistics for couples with similar diagnosis? (How many women our diagnosis (my age and condition) have success for multiple IUI cycles (in your clinic)?)
What are your IVF statistics for couples with similar diagnosis?
Is there value in doing another IUI cycle in our case?
3. What can be gleaned from our IUI - possibilities on why it failed and what could be done differently?
4. What was my first Follistim cycle’s high response indicate? (in terms of quantity and quality of eggs? in terms of how I will respond to the planned protocol? is there a cumulative effect of the drug?)

If we are going for an IVF:
5. How much Follistim are you planning to put in my protocol - like the 1st cycle or 2nd cycle or in between or even more the 1st?
6. If I responded similar to my first Follistim cycle (that we needed to cancel because of impeding OHSS) with the pre-IVF stimulation, is this a reason for cancellation?
7. What are typical reasons for IVF cancellation and how can they be avoided?
8. What kind of monitoring is going to be done while on the suppression stage with Lupron?
9. What will be the deciding factor for D3 embryo or d5 blast ET? What are the typical scenarios for cases similar to ours?
10. Is the progesterone going to be a suppository or IM injection?

Egg/embryo freezing:
11. If we have a lot of retrieved eggs, do you have a way of selecting better eggs than others? Is your facility have the ability to freeze eggs?
12. What is the correlation of “better eggs” to fertilization rate? to 8-cell embryo development (at Day 3)?
13. Assuming we have eggs or embryos to freeze, what is the storage rate?
14. If we want to fertilize 3 or 4 eggs only and transfer all fertilized embryos, would you honor that?
15. What do you do with embryo and blasts that are not transferred and you think will not survive freezing?

Others:
16. What is your view on alternative treatments (acupuncture, TCM, vitamins)?
17. If IVF fails to produce a positive, where do you see us moving next?
18. How do all these meds affect my breast cysts?
19. The last cycle (when we had IUI), I had to call the clinic 15 minutes before closing to know my beta results (instead of the clinic calling me). Is it typical to get beta results late in the afternoon?

Are there other things that I should be asking?

Do you have experiences regarding my questions? Would you share your experience and thoughts? Please leave your comments - I appreciate it!

Also, if you have the advanced maternal age factor, can you sound off too? I know a couple of you already. I would like to see real life examples of those who have come out of the trenches, too.

Long weekends are good because there is more time to relax. And more time do to more too!

In between doing the much-needed and much-ignored exercise, more time in front of the computer and getting together with friends and family, we had lots of time to just get lazy just like these 2:

Anyway, we canceled our appointment with DrH last Thursday. I’ve got lots of questions but we are not ready to talk to her yet. So our new schedule is on 9/23. There goes “every month counts”.

I’ve been thinking a lot though on different things:
- IVF
- Acupuncture
- Snowflakes Embryo Adoption

I will be looking for more information on these topics and am sure I will need to put them into writing in order to process my thoughts. I will share what I will theoretically learn so that anyone who has real life experience could chime in.

When ICLW August started on the 21st Thursday, I was not sure of targetting to be an Iron Commenter because there was so much happening at the same time- out of town in the weekend, meet-up and church meeting, catching up on trainings, group commitments, etc.

When the 25th Monday came, I find myself catching up on all the commenting. Inspiration striked and I realized I wanted to know:
- if I had what it takes to be an Iron Commenter, and
- what it will take to be an Iron Commenter

So, I settled in my mind to make it a goal to be an Iron Commenter this month. Later when I mentioned it some of my friends, they actually discouraged me as I will be spreading myself thin instead of going deeper with fewer blogs. I totally understand what they were saying, but I had already made a decision.

Here are what I discovered::

- Some blogs made me cry, some made me laugh, some made me pray, some educated me, some confused me and some were easy. What a great bunch of people!

- Themes and colors do matter. Aside from attracting us, the reader-commenters, it is important so as not to cause us headahes. Frankly, there were a couple that were difficult to read and that may have caused my headache…aside from being in front of the PC for more than 8 hrs and the pressure of aiming for Iron Commenter!

- I spent less than 5 minutes with blogs (and their authors) which I have commented on before because I have read their background and previous posts before. That helped.

It takes me about 15-20 minutes to know the person behind the blog so I can comment in a meaningful way. All in all, I probably spent 24 hrs commenting! About 3 hours of commenting per day. About half-week worth of a fulltime worker! Wow, it is tough, very time-consuming. But very well worth it, plenty of good reads!!! (Now, if I can just find them again…because I was in a hurry to finish all the commenting before the deadline, I didn’t bookmark them.)

Anyhow, I think I could still be more efficient and faster than that. If I could go down to 10 minutes/blog, that would be 6 blogs per hour to comment or 20 hrs to be an Iron Commenter for a typical month of 120 bloggers participating. Still a lot of time!

(Alicia - 2 time Iron Commenter, how do you do it???)

Oh BTW, did I tell you that I was doing commenting on The Secret is in the Sauce and Blog Around the World, too? Aaaarrggh! I was thinking “what did I get myself into?” On Thursday, I was only at the 50 mark, so I spent the whole of Thurday on the rest (~75) of the blogs and finished JIT!!!

So for this month, I am proclaiming: (even if Mel has not put up names for the August ICLW round)

Now that I have attained that goal and know what it takes, I think that will be the last time of aiming for Iron Commenter. I can say “been there, done that“! Next time, I’ll go back to my “deeper with fewer” approach to commenting!

One last thing… TIP!

If you are like me and want to track the posts that you made a comment on to see if there are responses to your post, try cocomment.com. Technically, you can use your Google reader to subscribe to comments on a particular post but that is at least 2 clicks. With cocomment.com, the tracking is automatically embedded in your commenting - no additional clicks.

Also, having a separate list of all your comments outside Google Reader helps keep the Google Reader less busy and less intimidating! Having them in a sidebar is helpful too to quickly see which blogs you have commented on already.

Go try it for yourself and see if it helps you manage your comments. Let me know!

Meanwhile, have a great, long weekend ahead. And see you around! In fact, do come back and visit me again even outside of ICLW!

Well, good morning, ICLW ladies!

Today is my theoretical ovulation day. Well, I am not ovulating - BBT is steady and CM is is not egg-whitey. I was just hoping that maybe while we are on a break, my body would somehow work “normally” and we would miraculously conceive naturally. There’s no price for dreaming, right?

Anyway, welcome to my blog! This is my second time to be with you all. Make yourselves comfortable and roam around.

Meanwhile, I wanted to write something witty or to show something funny for you gals today. (You who have been reading my blog know I neither witty nor funny, so that would be a stretch!) Anyway, I settled to post this inspiring video for all of us:

A lot of us have been disappointed a couple of times already - some more times than the others, but deeply disappointed nevertheless. I know, I have. And at times, I don’t want to feel the disappointment and pain that I steel myself to numbness. But my God is merciful, gracious, kind and loving and despite my stiff-neck, independence and stubbornness, He welcomes me with open arms and comforts me to peace.

Sometimes, I do feel hopeless. I am reminded though that my God is the creator of heaven and earth and to him nothing is impossible. So for as long as I am alive in this earth, I have hope for a child of my own. That’s what keeps me going in this journey to fertility.

The key thing that encouraged me was what God showed the husband:
“Keep focused on me and just as Peter walked on the water, you’d be able to go over your circumstance. Look at me and I will get you through the storm.”
May this be my prayer - eyes on the Lord and He will take care of me!

Another thing I liked was the verse that the wife mentioned: Psalm 113:9 -
“He settles the barren woman in her home as a happy mother of children.”

We all know the statistics - not all of us are going to be a mother of our own flesh and blood. Yet, I continue to hope that this promise be given to my home. Though not as I will, but as God wills.

How about you? Are you losing hope? What keeps you going?

Follistim is an expensive medicine - it costs about $0.78 to $1.3 per IU. So it is very important that as much as possible everything is used, nothing is wasted and any Follistim leftover maximized for use. Here are some things to keep in mind in order to maximize the use of this precious drug.

1. Understand that your RE will make an assumption on how much you will probably consume based on your factors (age, reproductive health and history, etc) and thus what you will be given a Follistim amount that will be just an estimate. How much Follistim you really need is not known until you actually go through your cycle since your daily dosage will be adjusted based on your own response. Be prepared to buy more or store leftovers.

2. Know the official statement from the manufacturer by heart! You will need this.

Follistim Pen® with the Follistim® AQ Cartridge may be stored by the patient at 2–8°C (36–46°F) until the expiration date, or at 25°C (77°F) for 3 months or until expiration date, whichever occurs first. Do not freeze.

Once the rubber inlay of the Follistim® AQ Cartridge has been pierced by a needle, the product can only be stored for a maximum of 28 days at 2–25°C (36–77°F).

Protect from light. Do not freeze.

3. Know your own cycle day count by heart as well. Be ready to make some counting or calculations. Do not assume that RE/staff is on top of all the details of your case.

(I looked at my RE’s clinic stats in SART and they have 675 IVF cases in 2006, roughly 2 cases per calendar day. I suppose this is why they could not (or do not?) go to that level of detail (unless called upon to do so). Meanwhile, if you want more attention to details you might see it on smaller clinics. On this other hand though, I am thinking that you will run into the concern of “not having a lot of experience”. I guess you choose your “poison” - now that does not sound good.

Anyhow for me, I would rather have the attention risk than the experience risk. My thinking is that I can play a part to minimize the attention risk by being an informed patient whereas, I cannot do anything about my RE’s experience! My best choice though is if both are low in a particular clinic.)

4. Ask your RE questions. Call them if you must! There are no stupid questions (only stupid answers!). And… you are paying them good money, you have the right to ask questions.

5. Follow the manufacturer’s instructions on storage and usage - intact or pierced. In my “own” words since I am graph-and-table person (warning!), this table should make it even clearer:

(If you just want the numbers (follicle sizes) go to the Follistim Response page.)

I do wonder though why 28 days after the cartridge’s rubber inlay is pierced? Do they have empirical data on its impact to potency and other effects?.

It’s just very coincidental that the typical cycle is 28 days as well. As if the drug is not intentionally designed (formulated) to reach the next cycle - so that we buy another set? Conspiracy theory starting…but oh, well, that is another topic.

(NOTE TO SELF: Contact Organon V at 1-800-241-8812 Monday through Friday 8:00 a.m.- 5:00 p.m. EST. I will update this as I get more info.)

6. For intact (unpierced) Follistim cartridges that you are not going to use anymore for some reason - maybe you already got pregnant (good for you!), past the 1st trimester, on a TTC break or have closed your TTC book - there are a couple of things that you can do with them:

• Sell it over the internet. I am aware of at least 1 website.
• Advertise it in the internet - your blog or related forum. You can sell it or give it away.
• Donate it to your RE’s clinic. That way, you can help others too.

Make sure you stored it properly!

I guess a lot of these are common sense but we can as easily naively trust our health providers and unwittingly think that all their orders are flawless. So, I think I cannot over-emphasize all of these! Also common sense as they are, the principles behind most of them can also be applied to whatever medicine you are prescribed.

Methinks there is no substitute to being an informed patient.

Meanwhile, do you have any other tips on what to do to maximize the use of the precious Follistim?

I noticed that almost half of my blog visitors are looking for information regarding Follistim. So I figured it may be helpful to some that I put this together based on what I learned about it, what to expect, what Follistim dosages are, etc. So here goes…

Follistim’s generic name is follitropin beta.

1. Follistim is a recombinant follicle stimulating hormone (rFSH) versus the human menopausal gonadotropin (hMG) such as Humegon, Pergonal, Repronex and Menopur which are extracted from the urine of menopausal women.

I think the FSH term is self-explanatory, but as for the term “recombinant”? I am not a scientist but what I picked up is that it is a genetic engineering process that uses Chinese hamster ovary (CHO) cells in the manufacturing process. I am sure it is a controlled manufacturing process, but just the thought of injecting myself with something “mixed” with non-human feels creepy.

I guess we do choose our own poison - non-human derivative or human menopausal urine? And no, I am not making these up … see these sources. (a) (b) (c).

Of course, Organon’s website indirectly states “mammalian” host cells vs directly stating Chinese hamster ovary cells! I suppose they don’t want to freak us out!

2. Follistim is prescribed to women with ovulation problems. Typically, women who are clomid-resistant or have PCOS use Follistim. (I have read about other women having protocols that includes clomid and Follistim, though.)

Follistim is also used for ovarian stimulation in preparation for fertilization - usually using assisted reproductive technologies (ART) such as intra-uterine insemination (IUI) or in-vitro fertilization (IVF).

3. Follistim is what it is called in the US. The rest of the world calls it Puregon. They are made by Organon, a Schering Plough company.

Other fertility drugs that are used for similar results are:
- Gonal F (follitropin alfa, rFSH) from Serono
- Bravelle from Ferring (urofollitropin, highly-purified human-derived FSH or hFSH)

4. Follistim is usually used together with human chorionic gonadotropin (hCG such as Ovidrel or Pregnyl) to trigger ovulation.

Follistim is also usually used with an gonadotropin releasing hormone (GnRH) agonist and/or antagonist for IVF protocols. GnRH agonist such as Lupron blocks the production of FSH and LH, and is administered 10-20 days in the previous cycle. GnRH antagonist such as Ganirilex/Antagon or Cetrotide blocks the effect of GnRH, and is administered on the later part of the stimulation cycle. (a)

5. Follistim dosages that you will be prescribed is an ESTIMATE and will latter be dependent on the individual response.
Your Reproductive Endocrinologist or Fertililty Specialist has some baseline dosages in mind based on your individual case and thus will estimate how much you will be asked to order from the pharmacy. The protocol is started on between cycle day 3 (CD3) to CD5.

6. Follistim requires close response monitoring by sonogram and Estradiol blood test every 2-3 days.
Sonogram will show the endometrium lining thickness and the the follicle count and size. A gradual increase is desired from CD3 to CD14. (In my case, my RE wanted to see endometrium lining thickness greater than 9.5mm and mature follicle (size>18mm) count of 3 to 5 follicles before we trigger on the CD13-14.)

Blood work is needed to read the Estradiol (E2) levels as well. As a rule of thumb, it is said that for every mature follicle, expect 200pc/ml. (In my case, the desired level was 1500 pc/ml.) Levels greater than 3000 pc/ml are usually associated with Ovarian Hyper Stimulation Syndrome (OHSS).

See a sample of Follistim response data vs dosages here.

Throughout the protocol, the dosage may be adjusted or “titrated” based on your response to the Follistim. For some, a cycle’s dosage may be too low or was increased too late that the right size and number of follicles is not produced. For some, a cycle’s dosage may be too much or was decreased too late that results to Ovarian Hyper Stimulation Syndrome (OHSS). If the baseline or adjusted dosage works, well and good. Do not be surprised though if it does not work and you will need another Follistim cycle.

Just a note though that there is anecdotal information that one patient’s response could vary from cycle to cycle as well.

7. Follistim is expensive … but DesignRx can give you a big discount.

8. Follistim has an expiration - 28 days from piercing or 3 months at room temp or until expiration date when refrigerated.
How to maximize the use of your precious follistim? Can you use expired follistim? See tomorrow’s post.

9. Follistim has been in use for more than a decade now.
It was first introduced in 1995 in Europe.
It was introduced in 1996 in the US but the Follistim® AQ Cartridge was FDA approved only in 2004.
It was introduced in 2005 only in Japan.

10. Follistim is expected to become cheaper by 2015.
This is when Organon’s Follistim comes off patent. Expect the influx of generic manufacturers to lower the price by then!

Anything of key significance I missed, fellow Follistim-users?

A week ago, M from the IVF clinic mentioned that for a woman my age, “every month counts”. Well, for us not to “waste” 1 month, I should have had my baseline ultrasound last Friday 9:15am and started with BCP last Saturday (CD3)….

But how could we go last Friday when we only had one night (less than 12 hrs inclusive of 8 hrs of sleep) to prayerfully think through an IVF decision? We needed more time, of course!

For me, it was a process for us, albeit, a 2-day process. There was denial first (why won’t another IUI work?), then there was frustration (why didn’t the IUI work?), skepticism (will IVF chances be really better?) and then clarity (I can see clearly now that IVF has 2x higher chances!).

Although statistically, we call it “chance” or “probability”, it is my belief that it is the Lord who creates the child within our wombs. Or not. This I believe and accept. The acceptance does not make it less joyful or painful when it happens. But then, I know in the end, I know He has plans for me, “to give me a hope and future, plans to prosper me and not to harm me.”

So by Saturday night after all that struggle and acceptance, I told myself “I am ready for an IVF”. I have already planned in my mind to call clinic last Monday if we can still start this month despite it being CD5 already so that this month can still be “saved”.

When DH and I talked on Saturday evening though, he raised some questions that he believes we need to answer first. Aside from needing more information on how IVF works, the more important questions were of the ethical kind. We agreed that we want to be honoring God on our decision and thus need to look into our hearts for our motives and to look to God for guidance.

I realized that I was so on the go-go-go mode already (reminds me of Amy’s post as a rocket builder) and I have not even thought about those questions. There I go again, leading the way when I should be patiently yet joyfully be talking it out with the Lord for his guidance in the decision making. Perhaps that is why I have DH - to complement me in that aspect.

So, we are basically in the hold mode now. No decision yet but I am looking forward to the conversations towards and to the decision.

How about you? What were your considerations, concerns and fears? How did you go about your decision making whether or not to move forward with IVF?

The ladies in our newly planted church had the first Ladies’ Night Out. We carpooled and I was on a car with 4 other ladies. It was interesting that we represented the latter 20+ years of the age and fertility spectrum:
50+ - 3 adult/college-age children
46yo - 2 high school children
40+yo - 17, 12, 10yo children
38 yo - 3yo twins
40yo - 0 (Yes, this is me.)

Recently, I’ve been catching myself seeing crowds, groups and friends from the statistical viewpoint of the of 1 in 6 couples being infertile. The above is the most recent.

I have thought through other “sample populations” I am/was a part of:
- my friends way back from high school…1/7
- my friends back in Boise…1/30 (with 4/30 having miscarriage and short-term IF and all have moved on to motherhood)
- my church friends in Boise…1/6
- my church friends in Austin…?
Why am I consistently the “1″ in these different groups, I complain. But why do I expect differently since I have filled the “quota”? Am just glad though that most of them have been sensitive of our infertility.

Have you looked at the world from this standpoint also? Or is it just me?

In-Vitro Fertilization - I never thought we’d get this far.

I knew IVF was a possibility for us even we started TTC’in in 2004. Of course, I placed it in the backburner because there were still many protocols “below” (less invasive, less costly) that we could try before we needed it. By that time that we need it, I thought it would be straightforward to move forward with it since we would have been prepared by the previous protocols.

I’m finding now that DrH has recommended IVF as our next step, that it is not as easy for me to move forward with it. When K from the clinic told me that, I was downtrodden. We were sort of hoping, it would be another IUI round. I think I was in shock that I could not drill more questions any harder - as if my mind went blank. Blind-sided.

Perhaps because at first we thought we are going to have a child naturally (don’t we all?). Nope!
Then ok, maybe with clomid. Nope again!
Then, ok, maybe this time with injectables and IUI…

And we were really hopeful on the first IUI last month because:

• Now, my ovarian cysts are gone, gone, gone
• IUI will be more “precise” than doing it naturally.
• We have conceived naturally in the past

But Nope! Negative! Denied one more time.

Although, we have not decided on what the next steps are for us. I was more ready to give IUI another round because of:

• 2 reasons above (cysts are gone and we have conceived in the past)
• SA was low on the first day IUI (when I think the egg had the most chances of being fertilized)
• My research showed that IVF at my age was about 11-25% vs the 20-25% that DrH mentioned for IUI (of course, she mentioned the usual disclaimer “it depends upon the egg quality”).
• Much less cost than IVF

So there I was not knowing what to think, not knowing what to do next. I just knew that in about an hour, I had an appointment with the ladies from the church for a dinner at a nice restaurant.

What I Don’t Like About IVF
I was rebelling against the thought of IVF. I was marinating, stewing, boiling even… So much money for something that is not going to guarantee success! So much money for something that does not have a more significant chance for success! Hmpph! So I thought…

I was thinking already that we only have a budget for 1 IVF. What if it fails?

Then we will be eating up our Emergency Fund. What if the 2nd IVF fails?

Then we will be tapping into our retirement and investment money. What if a 3rd IVF fails?

Assuming we even have the emotional fortitude to go through 3 IVF cycles, I am thinking that at that point, we should stop.

Researching the Stats AGAIN
It’s amazing how after sulking, pouring out and surrendering to the Lord all my concerns, issues, questions, pleas - He gives peace and clarity.

I was prompted to research the IUI stats again and guess what? I saw what I was blind to see earlier. The limited self-published IUI data from a couple of clinics were 6-12% (for a 35 yo woman).

It was NOT 20-25%. Somehow that number which DrH mentioned during the IUI cycle stuck in my mind. So even if I was reading the same reports last Wednesday, the other numbers of 6-12% were not registering. This is a real case of “I was blind, but now I see”.

Conclusion: IVF is about 2x more successful than IUI.

So this all boils down to my conjectured reasons and money.

All that Anxiety for Naught….
I did all the research, all the math, all the fist shaking. And all I needed was a clear and peaceful mind that comes only from the Lord. He showed me once again that “Who of you by worrying can add a single hour to his of life?” is so very true. It’s a lesson that He’s constantly teaching me specially on this saga of becoming fruitful, this infertility journey.

So, what is the worst case scenario? If we don’t have a child of our own blood by the 3rd IVF, then we would have $45K less (which could have been used for “better” use), be another year older and be potentially a lot more pounds heavier.

I look at this now and it does not look too bad, actually.

Ask me again tomorrow.