It really is a numbers game

Over the last few weeks, I have been debating whether my Dx should lead me away from the clinics closer to home. Mostly because I don’t feel they have the extensive experience with POF after chemo and radiation that their US counterparts have. I have not tried every clinic in Ontario or Canada so I cant say this for sure, but I feel that the experience and state-of-the-art technology is not as current as it is in the US.

So i decided to do a little sleuthing of my own. This site provides a good overview of how to decide on a clinic for those just starting out. In Canada, there is no independent third party that publishes the success rates of each of the clinics like they do in the US, so it is more challenging to research the clinics here. The Canadian Fertility and Andrology Society does post the success rates for all 28 Canadian clinics as a whole (spoiler alert: there were 27% live births from a total of 11,806 IVF cycles started in 2010).

I then crossed the virtual border and went to SART and CDC and started to look up a few of the American clinics that are mentioned in the forums that I am considering. Now bearing in mind that my focus is on clinics that offer DE programs and have experience with POF, I managed to gather the following info:

chart

Overall, staying ‘home’ for DE IVF would be significantly cheaper. However, the lack of experience and unavailability of an egg donor bank make this a risky choice at best. It may not cost less in the long run, since even if I were to find and go to the ‘best clinic’ in Canada, their success rates for a ‘live birth’ do not compare to their American counterparts and I may have to try multiple times to get my ‘live birth’.

In the US, I am looking as spending anywhere from just under double to about 4 times what it would cost in Canada. But there the success rates go up drastically. And it does seem that the more ‘successful’ clinics charge significantly more. There are also money back guarantee programs if you pay upfront for a number of cycles.

I am quite surprised by the SART figure for CCRM for 2011: 76% live births from DE cycles on women with POF! This is leaps and bounds better than the 30 to 50% at any of the other clinics with a large DE program. This is very surprising to me. I looked at historical data over the past 3 years and their rate holds steady at around 70%. That’s impressive! I guess I knew CCRM was one of the leaders in the ART world, but I didn’t realize how much better they really were until I looked up their figures.

Spending the time to look up the success rates really does help. I think it is safe to say that I am now very seriously considering CCRM. I know this is a crap shoot, but if I am going to play this numbers game, I am going to stack the odds in my favour, dammit!

Now who is going to tell hubby that it will cost him a small fortune to have this baby…

Flashback circa 1997

After reading this post (which offers a great overview of POF and what those of us diagnosed with it go through), I had a bit of a flash back to when I was 17, triggered by this sentence:

As a diagnosis of POF essentially precludes the possibility being able to conceive one’s own genetic child, women and couples coping with this diagnosis often face extreme grief not unlike the death of a spouse or close loved one

As I have mentioned, I have known that I would have trouble conceiving since my bone marrow transplant in 1992. This was further supported by the fact that I never had a period. But as humans we are creatures of hope. I always held on to this one little thought that maybe, just maybe my body would miraculously heal itself.

My parents never really spoke to me about this. I guess it was probably too difficult for my mom, and my dad is just not that sort of guy. He lacks any form of emotional sensitivity which leads to many arguments…but that is a whole other psychological turmoil. So they just swept the whole having babies thing under the rug. Got me some BCPs and called it a day.

Then one day I was walking by my mothers bedroom as she spoke on the phone with one of her friends. She told her that I would not be able to conceive a child of my own. I was in high school. Probably around 16 or 17. I don’t recall the exact day, but I do remember the emotions. I just froze. Mom was visibly upset by this fact. But she has a way of not showing her emotions, to anyone. This was a rare break in her otherwise un-phased exterior.

I do remember mourning. For about 5 or 10 minutes. I was upset. I cried. Thought about not being able to have a child of my own. And then I realized that modern medicine had helped me get a life that I would otherwise not have had. I had faith that modern medicine would assist me in this department as well. I had heard vaguely about test-tube babies, ivf etc., I believed that by the time I would be ready to have a child hopefully medicine would catch up to me. And if not, then I could always adopt. And with that I put it behind me.

Like my mother I put on that hard shell, and got on with it.

Get in line little stars…

So apparently half the women at my new workplace have undergone fertility treatments. One is currently pregnant with twins. Another has 2-year-old twins.

Setting aside what that is implying about our society in general and the current reproductive health of women… Is this not a sign that things are aligning themselves well for me?! I like to think that it is…

Research – Risks and Rewards

So while I hurry up and wait for this year’s IF journey to begin, I have decided I should start taking matters into my own hands. I have been doing a bit more research on POF after radiation, just to see if I am being realistic here.

Risks

This site sets out the issues with conceiving and carrying a baby to term after having radiation. Of course, like all things factual, it is both hopeful and depressing at the same time:

An increased risk of miscarriage after cancer is only a concern for a small percent of patients who had radiation to their pelvic area or some fertility sparing gynecologic surgeries

Um. Pelvic radiation. Check.

Miscarriage, preterm delivery, and low birth weight infants are more common in women who received radiation to their uterus. A specialist can evaluate any damage to your uterus and help you determine whether it is safe for you to try to achieve pregnancy.

Check for damage to uterus…(ongoing) check.

As you may know, there are a number of long-term health risks associated with chemotherapy and radiation treatments.  Some of these risks, such as damage to your heart or lungs, may complicate your ability to carry a pregnancy or put your health at risk while you are pregnant.

As of last year I noticed a slightly elevated BP, and have slight asthma. Fan-frikin-tastic check.

I feel like I am about to fight a loosing battle, and I don’t know if I am convinced it is worth the risk. But then there is this:

Rewards

CHR, a clinic in New York, has a whole section on their website  that deals specifically with women with POF. Of course they are in the business of fertility so I do read their site with a grain of salt, but they have been doing some research in the area, so maybe they have some experience.

CHR physicians have demonstrated, and reported in the medical literature, remarkably good pregnancy results in women with even severe POA (with DHEA supplementation and proactive ovarian stimulation).

As already noted above, even in the best of hands, pregnancy in women with POF is a rare event, and most will end up having to use egg donation. CHR does offer experimental treatments to POF patients, but we usually recommend donor eggs as the treatment of choice.

They do seem to cater to those that are pursuing DE options. If anyone out there has used them or knows some more I would love to find out! They are not very clear on how much a DE cycle costs, but after poking around a bit it seems that it would cost around $20,000+ if I were to go with an anonymous donor from their bank. A quick search through their egg donor bank  shows about 6 south asian donors, but I notice that most of them are close to 30 years old, which makes me wonder if they will be as successful… expanding the search shows some more younger donors though. That being said, I think it is amazing what these women are willing to do and I really respect that.

At Hannam their site is equally wishy-washy and states that it could cost upto $15,000, and I would be supplying my own (sister’s) DE, which I am on the fence about as it is. I also am not sure about Dr. H’s experience with women with my particular brand of infertility. It seems I do have some unique challenges that I will be facing.

So I guess the questions I need to work on over the next few months are:

  • Can my uterus support a viable pregnancy?
  • Is my current RE experienced in post-radiation DE IVF?
  • Do I attempt DE IVF in Canada, cheaper but perhaps not ‘specializing’ in my kind of IF, or in the US, more expensive, but they might understand my body’s problems better?

I think I know the answer to the last one. In a perfect world I would go with the more experienced, more expensive clinic without blinking. Just need to get my finances in order.

And so the stars align.

So, as I am now mentally prepared to do this whole DE thing, we need to really consider the financial aspects of this. Correct me if I am wrong but realistically, I am looking at $25,000-ish for the process (if we are successful in one try) and then another $10,000 for the first year of baby’s life. That’s a good chunk of change. With one income (mine), and AG in med school (thankfully his parents are footing that bill), our resources are limited at best.

And then the stars aligned. We sold our house.

This is the long story that goes with it. My new job is now over an hour away from our old house, and only 15 minutes from my parents house. With AG being away at med school for the next few years (yes we still see each other, just sometimes its via Skype) we decided it didn’t make sense to keep the house with me alone in it. So I moved back home. We both get along well with the parents so it is actually pretty great. And I can actually focus on saving money since we have almost no bills! Love my parents! 🙂

The best part, which makes me believe a bit in fate, is that the house is owned by us free and clear. (AG’s parent’s gift to him when he moved out east was to buy him a place, which we sold and bought this place). No mortgage. Perfect. So now we have minimal bills, a place to stay, people to babysit (should that time ever come), and a nest egg we can dip into for DE! Yes, we will have to top it up eventually when we do buy a place but thankfully there is no rush for that just yet. But I think the universe is working in my favour….for now.

I have also started reading: The Infertility Cure by Randine Lewis.

I never thought I could treat my condition with eastern medicine. But now I am an open minded skeptic. Deep down I do wish that a little bit of TCM (Traditional Chinese Medicine) could cure me, but I know that is a fantasy. I am starting to believe that it will help me get healthy enough to perhaps carry a child with DE. So lets see! Also coming up will be Making Babies by Sami S. David

(Oh yes and I have $500 per year in benefits I can use towards naturopathic medicine, and a total of $15,000 in IF drugs that my health insurance through work will cover! Serious celestial alignment happening here!) This is making me very happy. Now to find a naturopath that can help…

One year later….

Exactly 1 year and one week later I have returned.

A lot has happened professionally. New job. Which I LOVE. DH on a new career path which begins with med school. Which he loves. We sold our house (long story, but this is good too). Things are looking up. To top it off, yesterday I won $110 in free accessories from stella and dot at a work related trunk sale, so I get to buy myself some totally unnecessary jewelry just to make me happy. Shopping is always so cathartic!

On the baby front I had my family physician refer me to Hannam in Toronto this past summer. I have to say, despite the long wait, it took 3 months for me to see the Dr., that Dr. Hannam is fantastic. As a doctor he seems very efficient and really knows his stuff.

The clinic itself is very efficient as well. They communicate with you via email which makes things much faster. You have a dedicated nurse who you can call or email anytime, and they do respond within a few hours in most cases. So as a clinic I have a very good impression of them.

It is actually quite funny to see Dr. H in person, as he speaks into a dictaphone the whole time he is with you so that he can dictate any letters and such for refferals at the same time. It is kinda weird but cool at the same time. Just a strange way to have a conversation.

Dr. H ran a test (that OHIP does not cover and costs $100): the Anti-Mullerian Hormone test which basically tells me what my ovarian reserve is, you can read more about it here.

He also had me do a sonohysterogram (SHM) which is a short procedure where they use an ultrasound and an inflated balloon inside by uterus to help have a better look at whats going on in there.

The AMH test revealed, as we suspected, my ovarian reserves are very low. Normal is at about 6 and mine was close to 17. Which basically means my body is trying to get my follicles to develop eggs but my ovaries are just not responding. Premature Ovarian Failure. POF.

The SHM found something that looked like a cyst and the Dr. had me go in for a follow up pelvic MRI to determine if it was something that needed to be dealt with. That was in January. I have not heard anything from the Dr. office since so I guess that is good news.

Dr. H also recommended me to a specialist that deals with women with POF, which will help me to answer my questions about long term care and handling what basically is early menopause symptoms. That appointment isn’t until August of this year.

At the end of our meeting, Dr. H said that donor egg was my only option, but that with my sister’s ‘younger’ eggs we have a very good chance of getting pregnant. He asked when DH and I wanted to get pregnant and I said that we were planning for early 2014. So he said to come back when we were ready to start, as there would be no wait time now. I explained that I had my doubts as to whether my uterus would respond and build a lining (also explaining what happened at ISIS), and he said we could go through a mock cycle to determine if this was the case. He recommended that I do 3 consecutive months of a mock cycle which would give my body time to get used to building a lining. He said that it was likely that the first month I may not build very much at all, but as the hormones start to build in my body we should see a difference each month.

He left it with me to start my mock cycles whenever I wanted. I can call in to the clinic and get my protocol and have the prescription called into the pharmacist so it should all be pretty straight forward.

I have decided that I will start in May. The weather will be better so the drive into the clinic wont be so bad (1 hour from where I live/work to the clinic). I will have new health insurance to cover the drugs so that will be helpful, and DH will be back in town so he can deal with any mood swings first hand! (he has been away for school for the past 2 years, with conjugal visits in between :), another long story I shall tell one day).

So until then we wait.