Thursday, October 28, 2010

Email interview

Funny things happen when you have a blog. Would you agree? A while back, a representative from a fertility clinic wrote a comment on one of my posts. It did not seem like a computer generated comment, but something in the ball park of a response to what I had written in the post. I thought it was so strange at first and I was even a bit miffed. What the heck is going on? I thought. In reality, this is the public domain and anybody can read what I write and comment (and I can delete those comments if I so chose). 
 
I think that it would be so interesting to do research using the infertility blogs. I think my nose is way too close to the tree to even be able to imagine a day when I could see a forest, but it would be such an interesting data base to work from. Again, because it's in the public domain, this type of archival research would be easily approved by an IRB. Can you tell I'm procrastinating from writing my diss?

A journalist emailed me the other day because she had found my blog and was interested in writing a story about IUI and IVF, and infertility in general. She asked me a few questions by email and I've put my answers below. The questions are in black and the answers in green. If you have anything you would like to add, or you would like to answer these questions, I will direct the journalist to my blog and she can take a look at your answers. 
 
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Hi,
I've replied to your questions below, in a different colour. Hope this helps. Feel free to email for any clarifications or follow questions.

Augusta, (of course, this is not my real name. I use the pseudonym to remain anonymous)

Thanks for your response. I did know that Canada and the United States differed quite a bit, so I will not bother and ask about donors or anything like that, especially since you have mainly dealt with IUI.

Would you mind if I asked you a few questions then?  Basically, I want to hear from the actual patient's point of view on what it is like to go through the IUI process, whether it is generally successful or not, and whether (you, the patient) have also considered IVF. 

Going through the IUI process was a hopeful one at first. It felt like we were actually doing something that would lead us to having our child. Staff of the clinic we dealt with had come to our town for a presentation of their Infertility Treatment Services. My husband and I had gone to that presentation and knew that this was the clinic where we would seek treatment (we already knew that intervention would be required since I had longstanding issues with my cycles). We had consulted a RE (reproductive endocrinologist) in Toronto a few months prior, and we felt pressured to embark on treatment without carefully evaluating our options.

It took about 5 months to start treatment from the time my GP referred us to the fertility clinic (January 2009). After our initial appointment with the RE (March 2009), we had to go through a bunch of tests (blood tests for both of us, vaginal ultrasounds and an HSG for me). In May 2009, we started our treatments in earnest. We first had a big orientation appointment. We met with our nurse case manager for a few hours. She talked to us about the IUI process, taught the procedure for injections. My husband had to give a semen sample at that appointment as well. I had another ultrasound. Then we met with the team Psychologist for about 90 minutes. We talked about the psychological components of infertility and treatments. We talked about what could make us vulnerable as individuals and as a couple, as well as what made us strong and resilient.

The treatment involved injecting myself daily with gonadotropins (LH & FSH; which sadly, my body doesn't produce) and monitoring. This involved blood work 3-4 times per week and ultrasounds at the clinic. Our first attempt failed, and the cycle got canceled. The meds were not successful in stimulating my ovaries to produce follicles. In summer 2009, the RE tried a priming protocol, where I was a nigh doses of estrogen to build a lining in my uterus and prime my ovaries. I started the injections again in September, but once again, the cycle got canceled because of poor response.

IVF was not an option available to us at that point. The ovaries need to be able to be stimulated to do an IVF cycle and mine weren't. Our only option left was egg donation. This summer (2010) a friend of ours came forward with the offer of becoming an egg donor for us. We have gone ahead with this process and are at the end of doing all the preliminary investigations. We have an appointment in mid-November where we will find out if she can in fact be a donor and determine a time line. Egg donation is an IVF procedure split between two women. What I mean is, Sattva (my donor's pseudonym) will undergo the ovarian stimulation (injections, close monitoring) and then her mature eggs will be retrieved and fertilized with my husband's sperm. Once the eggs have fertilized (3-5 day process), one or two blastocysts will be inserted into my uterus. Fingers crossed, that will lead to a successful pregnancy.     

Also, I know that in the U.S., in various states, IVF must be covered by insurance. But in Missouri and most states, it is not always covered or sometimes only covered in half.  How does this work generally in Canada--this might be too broad--but does it simply vary according to your insurance plan or is there a nationwide ruling on whether IVF is covered or not?  Your IUI treatments were covered by your insurance, yes?

There is no federal coverage for infertility treatments because health care is a provincial mandate for the most part. To date, only 1 province (Quebec -where I'm from originally) has ruled in favour of paying for IUI and up to 3 IVF cycles. I live in Ontario, and those procedures are not covered. At the start of our treatments, my extended benefits package at work covered fertility drugs (which are stupidly expensive), but not all plans would cover those. We never got to the actual IUI, but we would have had to pay for that procedure, which I think was aroung $2, 500.
I am also interested in the psychological/emotional dealings you have to go through when undergoing IUI treatments and considering what you want your next step to be.  Even just a few words on what this process has been like for you are appreciated.

I think if you have read any of the blogs, mine included, you can see that the emotional and psychological impact of infertility is immense. Compounded to the heartbreak of infertility are the fertility treatments themselves. Fertility treatments are not for the faint of heart. The process is a grueling one in every way and there are no guarantees. Surviving on hope alone, women suffer from a host of psychological and emotional difficulties related to the stress of the treatments, the worry of never succeeding, and the impact on their physical and social selves.

The roller coaster metaphor is an apt one, and many of us have used it to describe the emotional process of IUI or IVF (and natural) cycles. You start out with hope and worry, but you try to let the hope prevail. You get totally run down by the meds, the many appointments, the stress of missing work, etc. Then the procedure happens and you wait in hope, and very often, it fails and you come crashing down. All of this against a back drop of your friends, relatives, and neighbours getting pregnant, hosting baby showers and giving birth. It is all very, very painful.
    
Infertility changes a person in so many ways. It has been a significant challenge in my life. I suffered from depression after our treatments failed. When our friend offered her eggs, I couldn't even consider her offer at first, because I was to afraid to even let myself hope again. But we decided it was worth a try and so I decided to take the risk of hoping again, knowing there would be other options if this did not work out (e.g. embryo donation, adoption). I think the following quote sums up how I felt about trying again:
 “To grow, to be reborn, one must remain vulnerable--open to love but also hideously open to the possibility of more suffering.” ~ Anne Morrow Lindbergh


Thanks again for your help and time. I wish you the best. Just answer what applies or what you can.


10 comments:

  1. Your responses are beautiful. You so wonderfully articulate the emotional and psychological impact that infertility has on us. And then that quote, is just so poignant.

    I just read your comment on my blog. And I completely agree with you. You need to protect yourself, and you should not feel pressured to out yourself to anyone, let alone FB. I added my own comment to my blog: "I totally agree with Augusta. It is much easier to do with a baby in my arms. And yes, people don't know how to deal with pain, and do say some pretty stupid stuff, and so that is also why I probably never would've written anything on FB prior to this point in time."

    Have a good day my friend

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  2. Thanks for your comment, JRS. I got the quote from our friend Rebecca at The Road Less Traveled. It just encapsulated what I have been feeling in the last few months.

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  3. This was great to read, my Aoûta. I sooo hope Sattva is the match she feels to be for you and Mr. A. Sending love.

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  4. This is great that people are finding your blog and asking you questions to be distributed to the media. Great answers.

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  5. I'm totally feeling that quote right now. That vulnerability is what makes people think we are so brave and what makes us want to give up on treatments. Sometimes our bruised and broken hearts hurt so much that it is hard to believe we have any left to still give to a child. Time heals...but it doesn't stop me from being afraid to put myself out there again.

    I love all of your answers! Especially to the last question. You're amazing!

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  6. Yup. Suffering. Bring it on. That hope is a damn good high.

    Well said all around. Thanks for posting this!

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  7. I think you did a magnificent job.

    I've sometimes considered dropping my entire line of research and dedicating myself to studying the psychological aspects of infertility. There's just not enough good stuff out there, particularly now that we've made lots of advances in brain imaging! And who knows, unlike my real research, this might even be FUNDABLE!

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  8. That quote at the end was wonderful. Thanks for sharing, and for educating others.

    @bunny: that would be awesome :)

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  9. Wonderfully answered, Augusta. Reading this I found myself nodding along to so much of it. The fact that things are compounded by the treatment, that rollercoaster of hope and despair.

    That AML quote is so applicable to our situations. (And she knew a thing or two about suffering).

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  10. You are a wonderful representative for our ilk and highlighted all the most important facets of IF. I'm so glad you were asked ...

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