Friday, May 22, 2015

Let's Get Real

Warning: This post will contain a no-holds-barred description of my recent appointment at my fertility clinic.  While I promise no graphic pictures, I cannot promise that descriptions of certain events won't be a bit blunt.  Reality can be shocking, funny - and more than a little ridiculous!

I attend infertility support group meetings with an inspiring group of women, and it struck me as a little funny when the conversation on several occasions turned to the role we often assume as educators.  In other words, I found myself in the midst of a troop of health activists who use their experiences with an invisible battle to educate people around them, begin to remove the stigma, and let other people with these hidden challenges know they are not alone.  Funny how life works, isn't it?

In our self-assigned role as awareness activists, we are finding some joy and purpose in the chance to share what this journey is really like - both the good and the grotesque - and when possible to do so with humor and hope.  So I want to share some of my experiences with you.  I'm sure the things I describe will be quite familiar to more of you than we'd like to admit, and for others it will expose you to the world where 1 in 8 couples will find themselves for a time.

Generally not a fan of seeing all the equipment laid out...maybe that's just me.
Every doctor / clinic will do things a little differently, but there are many tests and procedures commonly performed in the fertility community.  The other day I had the misfortune opportunity to experience two I hadn't been through before: a mock transfer and a saline sono.

The mock transfer was performed first  I was instructed to drink 32 oz of water one hour before my appointment to ensure a full bladder (insert panicked "are you serious" face here, because that's what I made when I got these instructions).  It seems for this test they use a long catheter through the cervix as if they were placing an embryo guided by an abdominal ultrasound, and they need your bladder to be full so they can distinguish it from your uterus.  Not being a fan of any test that involves a speculum, my primary concern was how I could relax one set of sphincters to allow the speculum while keeping another set engaged to prevent a urinary blowout on the table.  I promised you an honest recount and a brutally honest one you shall have, people.  This was the test I dreaded more, and to be honest it wasn't nearly as bad as I had anticipated.  Perhaps the suggestion I read online was true, that focusing on not peeing during the procedure helped distract me from the activities themselves.  I'm not looking a gift horse in the mouth, especially since this was a test-run for a real transfer so I will obviously have to go through this again.  I do have a theory, though, that this test is really to see if you're prepared for all the bladder pressure you'd face during pregnancy because holding a full bladder while having things inserted vaginally AND someone applying external pressure with an ultrasound wand was a bit tricky.

Then came the saline sono.
Say hello to the transvaginal ultrasound.  While the tests I'm describing might be more relevant for more advanced ART (assisted reproductive therapies), the transvaginal ultrasound is pretty common right from the first few infertility tests.  You get used to it quickly.  And yes, they use condoms as sheaths - hey, why reinvent the wheel, right?
For this test, after getting to relieve myself (THANK GOD), I re-positioned on the exam table and they brought back everyone's favorite gynecological tool, the speculum.  After inserting a different catheter with a balloon attached to the end, the speculum was removed so that saline could be gently pumped into my uterus, expanding it for a better view.  They then used a transvaginal ultrasound (because, as the NP commented, there clearly isn't enough stuff going on in that region) to view the uterus and look for any physical / structural issues.  To keep the catheter in place and as a frame of reference, they inflate the little balloon at the end...and ladies (I assume most gentlemen have passed out by now) that is when the pain hit.  It was a very specific spot, I could point with my finger to exactly where it hurt, and it felt vaguely like someone driving an ice pick through my abdomen several inches south of my belly button.  This will vary a lot person-to-person but for me this was clearly the worst part of the visit.  My husband was present with me and poor boy almost lost his hand for me squeezing so hard.  You can watch the ultrasound images as the test is being performed and they'll happily describe what you're seeing.  This is usually something I do and definitely something I recommend - not only do you become more educated about your health, body, and treatment but it's also distracting - but this time I couldn't even open my eyes long enough.  Apparently they did see a small "blip", a white mark, which could be a small adhesion, a piece of tissue that just wasn't flushed out after my last period, or most likely, a small polyp.  Most women get these from time to time, and it's easy enough to deal with, but we needed the doctor to review the pictures and weigh in.  After the exam was over and they had all the images they needed, they removed everything and cautioned me that I would feel some of the saline drain out - yet another glamorous moment in my muck toward motherhood.

To be fair, I should qualify my description of the experience a bit: I did not scream or cry, and I wouldn't even describe this as the most painful experience of my life.  Also, once the procedure was over the pain subsided fairly quickly (yes I had taken ibuprofen prior to the appointment as suggested and yes, I took a little more afterward).  My biggest issue was that I had quite a bit of adrenaline flowing through my system between the pain and my anxiety about the whole visit, and I started shaking.  The NP and the medical assistant were cool about everything, they had me stay lying down for a bit after we finished, took my blood pressure, and got me some water.  It took a couple minutes but eventually the shaking subsided.  That's when the MA commented that my color was returning and after she stepped out again my husband informed me I had blanched to an unnatural shade of Clorox white even for my usual pasty-assed self.  While sitting up now sipping water, I asked when exactly I went so pale and he answered, "when they inflated the balloon".  I guess that struck me as funny because I laughed...and when my abdominals contracted it forced out some of the remaining saline.  Before I could stop myself I turned to him and blurted "YOU MADE ME SQUIRT"!  I must say, I hadn't seen him laugh that hard all day.

And that was my evening of IVF work-up tests.  I told you - shocking, funny, and more than a little ridiculous!

Friday, May 15, 2015

There's How Many Ways to Do This?

Image of ICSI found here.
Let's take a poll, shall we?

Raise your hand if you know someone who has struggled with infertility.

(If you actually have your hand up, good - it helps when you play along:))

Keep your hand up if you know someone who went through infertility treatments of any kind.

How about anyone who's been through IVF?

(I'm guessing a few hands have gone down but several are still up...let's keep going.)

Keep your hand in the air if that person you know who did IVF had a baby from the treatment.

(You're such good sports!  You can put your hands down.)

If I were the betting type, I'd have money on the chance that almost every hand that was up for "I know someone who did IVF" was still up for "they had a baby".  Is that because IVF always works?  HELL no. In fact, most women who go through IVF have only a 20-35% chance of success in a given cycle - anything over 40% is considered terrific. No, it's because in our society, we don't talk about IVF that doesn't work, let alone the things involved in the IVF process.  Unless the person doing IVF was you, a sibling, or your absolutely closest friend, I'd be surprised if you even know they were doing it until the baby was at least visibly on his or her way.  I'd bet you have no idea how many rounds that couple may have failed before having a successful transfer and pregnancy.  It's likely not your fault, they just didn't feel comfortable telling everyone.  But we all know I am not encumbered by such social norms :D

I am just beginning my journey through IVFland.  This week marks two years my husband and I have been TTC (trying to conceive), and we've been through quite a bit of testing, medications, surgery, and several different types of treatments.  We've done the classic Clomid, tried IUI.  We did, one time, get pregnant but as you know the baby had a trisomy (third copy of a chromosome) and resulted in a miscarriage right before Christmas.  We finally took a step back after that to consider if we wanted to continue treatments, and explored the adoption scenario.  After checking out three agencies, we determined that adoption may be in our future but right now we are better prepared to try some more treatments.

However, we also decided we were not satisfied with the fertility specialist we had been seeing and realized it was time for a second opinion and a new approach.  Fortunately, through the infertility support group I joined, we were aware of a few local alternatives and one in particular which seemed to have a very passionate following, and who offered a free 2nd opinion consultation option!  We took our records from the three previous doctors, went through our entire medical histories, discussed our concerns, and sat down with the new doctor.  I'll dedicate another post to why I'm liking this new place so much, but suffice it to say she has the approach we need not only to treatment but also to patient care.  Her advice is try a "mini-stimulation" cycle of IVF which uses a significantly lower quantity of medications than traditional IVF, as my tests indicate I'm likely to be a good responder.  This is important to us with all my medical issues, as we are concerned about what the process could do to my body and overall health.

And so here we are, going through the steps to get ready for our first IVF cycle.  Oh, and by the way, the terms "IVF cycle" itself is confusing, so let's break it down:
  1. The first phase of IVF is egg retrieval.  This is where they stimulate the woman's ovaries to produce a higher number of eggs than are usually developed during a natural ovulation cycle.  When ultrasounds and blood tests show the follicles are mature, a needle is inserted through the wall of the vagina (while under anesthesia) to draw out the liquid in each follicle which should contain the eggs.  
  2. The eggs are then fertilized (this can be with the male partner's sperm or donor sperm, and the sample may be provided the same day or in advance and frozen).  This can be done old school with many sperm in a petri dish or via ICSI (Intra-Cytoplasmic Sperm Injection) where one sperm is selected and injected into the egg.  My clinic performs ICSI.
  3. The fertilized eggs are then incubated for a period of 3 - 7 days (this depends on your doctor, personal preferences, specific medical scenarios, etc).  With my clinic they usually grow for 5 days.  It is important to note that it's unlikely all embryos will make it the full length of time.
  4. At this point one of two things will happen.  You can have a fresh transfer which involves placing an embryo in your uterus with a catheter on that 5 day mark (my clinic will only transfer one at a time, and I'm ok with that - with all my medical issues we don't need the added risks of carrying twins).  This will depend on how retrieval went along with your health at the time.  There are several things that could preclude a fresh transfer, including your own preferences.
  5. If you don't have a fresh transfer, all embryos will be frozen.  If you do a fresh transfer, any remaining embryos will be frozen.  Oh, and you have another decision to make - PGS.
  6. PGS is Preimplantation Genetic Screening, which is a NON-DESTRUCTIVE test that can be performed on embryos (and which even the best insurances don't cover).  Prior to freezing, a small biopsy is taken from the outer ring of cells which will eventually form the placenta (thereby leaving the cells that become the baby itself untouched).  The sample is then examined to determine if the embryo is chromosomally normal.  The test will determine if the embryo has the right number of chromosomes, which chromosomes may be missing, and which may have an extra copy.  It will also identify the sex of the embryo but you can ask your doctor not to tell you that.  So yes, this test will tell you if your baby has Down Syndrome or another chromosomal condition - whether compatible with life or not.  It will NOT tell you traits such as eye color, genetic risk factors, and so on.  How you use this information is a personal choice.
  7. Once you have a fresh or frozen embryo transfer, you enter the infamous "Two Week Wait" where time seems to stand still and your stress level reaches new heights.  There's a lot of discussion around how to survive the time you wait to find out if the embryo implanted, and most tips center around how to keep your mind busy.  A lot of women stock pile books or binge-watch TV series.  Part of the challenge is that most forms of exercise (a stress-relief tool used by so many people) will be off limits during this time adding both to your physical discomfort and your anxiety.  During this time, it's common to continue a hormone protocol, depending on your specific case.
These are just the basic steps.  When someone says they are having an IVF cycle, it could mean that they're having a transfer, or a whole new egg retrieval being done.  And this process involves so many decisions and choices I never, ever contemplated before being in this boat.  What do I need / want to do to prepare my eggs for retrieval?  This could mean medication, supplements, acupuncture (which is incidentally something my peers SWEAR by), clean eating or other special diets, specific exercises, massage, even special heat compresses.  The medications you might take during stimulation, while preparing for a transfer, or following a transfer will mostly be directed by your doctor but you do have some input, again including diets, supplements (ALWAYS clear them with your doctor - "natural" doesn't mean it won't interact with meds), exercise (if permitted), and so on.  It's overwhelming.

So this is where I am.  I am preparing for my first egg retrieval which for me means going through several more tests since I am new to this clinic, and panicking because I'm well within the 90 day window prior to retrieval when studies indicate you can most impact the quality of your developing follicles and I have NO IDEA what if anything I should be doing differently.  Next week I will meet with my doctor again to review everything and hopefully get the green light for the retrieval, after which my husband and I will have to go for informational sessions and to be trained on administering the injections at home to encourage egg development.  I'm attending support groups twice a month (one led by a therapist and one peer-led group organized under the awesome national organization RESOLVE), and we are also in touch between meetings as we're all in a high-activity state right now.

So, if your'e still with me after all this discussion, I'll ask you one last question - how many of you had any idea what's involved in IVF?

Because I sure as hell didn't.

Sunday, May 10, 2015

Non-Traditional Mothers' Day

Happy Mother's Day, from the bottom of my heart.
To my mom, to the moms in my family, to the moms I'm friends with.
You know how blessed you are to have your kids, and that's one of the reasons in itself that your kids are blessed to have you.

Please post pictures of your handmade, glitter-covered cards, 'check in' from restaurants you're at, and tell the world how much better your life is for having your kids.

Please understand why I won't be hitting "like".
Why I may not even read the posts at all; may scroll right past the pictures.
Understand that it is how I have to take care of myself right now, and not my way of making you feel guilty or casting a shadow on your celebration.
If I didn't think those things were worth celebrating, I wouldn't be working so hard to have them in my own life.

Understand that I am already living much as a mother: getting up at crazy hours to get to daily appointments, stressing over how to balance work obligations with my family priorities, and thinking every day about my someday - children's welfare (not to mention existence). I even endure physical aspects, but instead of labor pains and a strained back mine are injections, anesthesia, surgery, vaginal ultrasounds (which are not exactly as "non - invasive" to me as a woman as medicine wants to label them), body - wide side effects of hormones, and exercise limitations.
And yes, not unlike children themselves, infertility can totally screw up your sex life in ways you may have never imagined. For people like me, it is not in any way "the best part of making a baby".

Understand that in my journey, I am still hopeful.
If I wasn't, I wouldn't be continuing to go through the things I do.

Understand also that for many women, THAT BABY WILL NEVER BE.
IVF doesn't always work, even adoption isn't always possible or may be an option some people do not want to take.
Understand that childfree is a choice for many, a default for some, and that I am quite reasonable in my fears of it happening to me.

Understand that telling us "it'll happen someday" is not helpful; "I love you" is; "I'm sorry" is; "I pray for your happiness" is.

And if you are so inclined, share my post as I have shared the posts from my friends who are also non - traditional moms on Facebook today.  Use the social media network of your choice.

My post is complete with pictures for my lost baby- the ultrasound of my daughter Grace when she lived so briefly within my womb, and where she now lives represented by a mustard seed tattoo and eternally in my heart.



Tuesday, April 7, 2015

2015 Sjogren's Walkabout

Team UII at the Philly SSF Walkabout

At last it's here, it's finally SPRING!
What fun and joy will this season bring?

There's flowers and sunshine, and lots to do.
But the most fun of all will be at the Zoo!

So check us out and join our team;
The funds you help raise will support our dream -

To live a life where we more than cope,
Where we laugh and love and are filled with hope!



What: 11th Annual Walkabout for the Sjogren's Syndrome Foundation
(This is my fifth year on the committee for this event!)
When: Saturday, May 2 - Registration opens at 8:30; step off is at 10:00AM
Where: Philadelphia Zoo (for those in the Philly area - if you aren't nearby, please consider donating, and check the Sjogren's website to see if there's an event in your area!)
How: Donations can be made online or by contacting me.  Qualify for FREE ENTRY to the Zoo for the entire day by simply raising at least $10 per family member (ages 3 and up)!  
For details on earning FREE entry and how to make donations, visit my team page at here: 

Please remember to invite your friends and family!  You can share this post via email, Facebook, Twitter, Linked-In, Google+, etc.  Or, sign up for the walk and send your personal page around!

What is Sjogren's?
Sjogren's Syndrome (pronounced "SHOW-grins") is the second most common autoimmune disease in the US, though it is dramatically misunderstood.  In this disease, our bodies attack themselves, especially moisture producing glands and connective tissue.  While the most common symptoms include dry eyes, dry mouth, fatigue, and chronic pain, Sjogren's can affect every system in the body.  It is chronic and progressive, meaning there is no cure and it will usually get worse over time.

But the SSF (Sjogren's Syndrome Foundation) is working to change all that.  The Foundation has recently cut the average diagnosis time from 7 years in half, and is continuing to work on making that even shorter.  They also:
  • Provide resources to patients, family, and healthcare providers,
  • Host an annual Patient Conference,
  • Publish materials,
  • Raise awareness among the healthcare community to drive interest in this pervasive disease, and 
  • Fund research into effective treatments and possible cures!
The Philadelphia Walkabout is the Foundations largest fundraising event in the country!

Sjogren's By the Numbers:
  • An estimated 4 MILLION Americans have Sjogren's
  • 9 out of 10 patients are women (though both men and women can develop the disease)
  • Sjogren's patients are at a 44X greater risk of developing Lymphoma
  • Sjogren's patients need an average of 50 TIMES more dental work
  • The average age at diagnosis is between 40 and 50 years of age (but it can occur at any age - I was diagnosed at 15 with symptoms beginning at 2 years of age)
Learn more about Sjogren's and the SSF at www.sjogrens.org

Friday, January 30, 2015

Our Littlest Gift

As I understand it, "grace" is a gift from God which allows us to do and experience and understand things we couldn't do, experience, or understand on our own. Our lives without grace may lack direction or leave us unfulfilled - my guess is because we don't understand what God wants of us. When we know which way to turn next, it is because of grace.  We tend to think of grace as a happy, soothing feeling, but I'm not sure that's always the case. I think sometimes grace hitches a ride with more painful experiences. The kind after which we reflect and say "if not for that, I might never have gotten to this". I think it is in feeling the glow that embraces us when we are with "this" that we can appreciate the grace we've been given.

So in a nutshell, I think grace is a gift from God - received many times over, mind you - which gives us peace and direction and helps guide us toward the things we should be doing and experiencing in our lives. When the chromosomal test results on my miscarried baby came back telling us it was a girl, it just seems right that we decided to name our daughter Grace.

Ephesians 2:8 sums it up quite nicely for me: For by grace you were saved through faith, and this is not from you; it is the gift of God.  Our littlest gift sent us on the path toward adoption now, already knowing that whoever the child is we bring into our family at this time, it will be because of Grace.