the new website

Well, after much brainstorming (and brain-clogging), talking to friends, and writing down idea after idea on paper. I finally came up with a name for my new website: ReproRenegade.com.  It seems my little sassy joke of a signature the other week actually stuck with me!

My husband didn’t like the name, but since I liked it and I am now officially a “renegade,” I went with it anyway.  He said it reminded him of someone sneaking through a yard at night to repossess a car.  Okay.  I can live with that.  In fact, I DID intend the tagline to play up the “repo” connotation: “One woman’s unrelenting quest to repossess her fertility.”  So there!  I still think it works.  And if it doesn’t, it’s too bad now because I already paid for the domain!

So, I invite you to check it out: http://reprorenegade.com/  Tell me what you think, suggest improvements, forward it to others, discard it as the dumbest thing you’ve ever seen – anything! 

I am hoping to turn this new website into a pretty regular blogging platform, and will use wordpress.com to run copies of the posts as well.  *Hopefully* … if all goes according to plan :)

Thank you again to everyone who has supported us in our baby-quest.  We wouldn’t be here without the encouragement and care you have provided to us in many dark days.  We are so very, very blessed.

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Starbucks gift card winner!

I am happy to announce (and I apologize for the delay) that Kim S. is the winner of the Starbucks gift card giveaway!

Kim, I really liked the idea of using “Beyond Dead Ends” somewhere in the blog concept.  I want to thank everyone who gave this idea thought and entered a suggestion!

Kim, go ahead and send me a message with your mailing address, and I’ll get it to you ASAP.

Have a great day, everyone!

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why “reproductive immunology”?

Doctors Smoke Camels

Did it happen?  Did your eyes glaze over yet?  Hang in there with me — I want to make this relatively painless!

If you’re not a science person, that’s OK.  I just want to make a distinction here between what “was” and what “is to be” (like doctors endorsing cigarettes to doctors condemning cigarettes!)  You see, when I found out that reproductive immunology existed, and that it was its own field, entirely different than the reproductive endocrinology that is commonplace, I knew I was going to have a story to tell.

And here’s where the rubber meets the road: for the woman who has struggled with infertility, miscarriage, or repeated failure with current treatments like in vitro fertilization, it may actually be very important that she knows this distinction exists.  Because most fertility doctors are still not using reproductive immunology, and when they tell that woman they cannot help her, they are handing her a ticket to a dead-end.

What if that dead-end doesn’t have to stop her?  Wouldn’t that change her whole life?!

This is where I feel I am.  I’ve been handed that dead-end ticket so many times – and for me, I know it’s many fewer times than the women who’ve tried even harder than me to have children.  Many of you have struggled to get pregnant at all.  Infertility can be a very sad, lonely road to walk.  So if there were a way to get off that road, wouldn’t you throw yourself at the chance?

Here’s the thing: how are women going to know they can get off that road if no one tells them?  That’s where my story is coming in (I hope, anyway!).  That’s why I told you about my “stepping stones,” my trip to New York (parts one and two), and my bloodwork.  That’s why I am hoping to develop a site just to talk about this new discovery (it’s not too late to enter my giveaway contest!)

And so, until I figure out the details for that site, I’ll continue to post here.  I’m hoping to share about statistics of success for reproductive immunology, and to peel back the layer of mainstream medicine that most of us aren’t seeing beyond.  I’m no doctor, but I have an experience I’m not going to be quiet about.  So sit tight – and pray for me if you have a minute.  I need wisdom, and I need a lot of it!

One more nugget for you before I go: did you know that the current protocols (which my Pittsburgh fertility specialists use) for treating recurrent miscarriage are from 2001?  Doesn’t eleven years sound like a long time to you in the field of science and medicine?  It’s time to step it up, docs!  Ladies, let’s be there for one another, because most of the time, it’s we who help each other when the doctors have let us down.

Until next time –

Your Friendly Neighborhood Repro Renegade (haha, I just felt like I needed a signature there! … and we’ve been watching a lot of Spiderman.)

photo credit: jollyboy

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Starbucks gift card giveaway – enter here!

All right.  Here’s what it is, folks.

I’ve been driving myself bat stuff crazy for two days straight trying to come up with a name for a new website.  I need help!

That’s where you come in, and enter also my cheap, unoriginal way to get you to help me!

All you have to do is read the rest of this post and leave your comment to be entered to win.  The prize is a $10.00 gift card to Starbucks — I know, I know, it’s not much, but it’s ten dollars more than you have right now right?  And being that this is my *first ever* giveaway, I’m starting small and you’re just going to have to sit tight.

Here are the parameters:

1) I want to start a new site to showcase whatever this is that I am beginning with reproductive immunology and its potential to heal me of recurrent miscarriage.  I want to be able to tell the world: “Here I am, and yes I am following an ‘experimental’ path, but it sure is getting me a heck of a lot further than those other specialists did.”  Or something.

2) It has to be cool.  It can’t have some dinky name like “My Reproductive Journey,” or “Blogging About My Uterus.”  (Those are extreme examples.  Bottom of the barrel examples.)

3) I prefer not to use the hackneyed infertility/baby blog terms such as – well, “infertility,” “baby,” “womb,” “pregnancy,” or “miscarriage.”

4) The name of the new blog/site will tell the average passerby that I am on some sort of journey or project that is being facilitated by an untypical doctor (there are only a handful in the whole country) in a newer field of medicine.  It should convey hope, movement in a direction, personality, and courage.

Maybe I’m trying too hard, but I feel strongly that if I am helped by this approach to reproductive health, then other women will be also.  I want to develop a site that is professional, helpful, relevant, and … well, hip.  I’m here to document a journey, and though I’m just one woman, we are capable of changing the world when we follow what’s right :)  I would be honored to have your help kick-starting this new venture.

Leave a comment below (or three, or 50!) and I will choose from the entries no later than Thursday, Aug. 23rd, at 10:00 p.m.  The winner gets said gift card to Starbucks, my gratitude, and the gratitude of all those people who don’t have to click on a blog called “My New Womb.”

For your consideration and reference:

Dr. Jeffrey Braverman’s Reproductive Immunology Practice

The Alan E. Beer Center for Reproductive Immunology

Wikipedia’s very short reference page for Reproductive Immunology

Posted in miscarriage | Tagged , , , , | 5 Comments

15 vials of blood

I think it was 15, anyway.  After the technician drew my blood on Wednesday, I definitely had a stack of 10 vials of blood sitting there.  My husband had about 5 – honestly, I didn’t count, but it was a lot for him.  (He was such a big boy :)  )

The bloodwork kit from ReproSource Fertility Diagnostics arrived by FedEx on Tuesday.  We had to call a couple of labs to make sure they would do a blood-draw for an outside lab.  The local hospital would not, but I Googled “Quest Lab” and found a Quest Diagnostics partner nearby who said they could.

Inside the box, there were three other boxes, one for each place the vials are going.  I did not need to open these boxes.

Kitty helped.

The local lab charged $10.00 per person to perform the draws.  Not bad at all, considering our third option was to have ReproSource hire a mobile phlebotomist to come to our house and charge $50.00 per person.

The vials are going to three places:

  1. Rosalind Franklin University of Medicine and Science- North Chicago, IL
  2. National Jewish Health Immunology & Flow Cytometry Lab (ADx Lab) – Denver, CO
  3. ReproSource Fertility Diagnostics, the referring lab – Woburn, MA

As you can see, Dr. Braverman ordered a very thorough immunity panel on us.  We had to have our blood drawn anytime between Monday through Thursday so that a weekend wouldn’t interfere with transport and labwork — the blood had to be viable for these tests.  We also had to have it drawn together since some of the tests require mixing our blood.

Here, we see another huge difference between “regular” fertility specialists and the work of a reproductive immunologist.  No other specialist ever tested me for any of these things.  Just for information’s sake, they were:

  1. FOX P3 (CD4+/CD25+/Fox P3)
  2. RIP (modified)
  3. TH1/TH2 Cytokine Ratio
  4. NK Assay
  5. HLA Panel
  6. CBC with differential
  7. LAD
  8. T-cell Subset
  9. KIR Receptor
  10. another HLA Panel on my husband

And, um, please don’t ask me what any of that means.

Hopefully, we’ll get some results by the end of the month, and Dr. Braverman will call me with his recommendations for treatment.

I don’t know how many times you might hear me say this, but it is SUCH a relief to be in a place where you feel like you can finally relax and let the doctor do all the work.  I can set aside all my books and notes and Internet searches, and just let the man find what’s wrong.

I don’t ever want to forget how God has answered our prayers in getting us here.

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more new york, or, why I always bring maps

Walking in Soho

Two weeks ago, my husband and I thought we were soooo funny as we slammed AAA for being an institution of the past.  “Like, who needs a TripTik anymore, you know?  I have this thing called Google.  And a GPS.  And a cell phone.  And shall I go on?”

We were put squarely in our place last week when we desperately needed good maps for our trip to Manhattan & New Jersey.  Since AAA wouldn’t sell me any maps, I put a plea out on Facebook, begging someone to help us.  One friend cajoled me for wanting such an old-fashioned thing, but I’ve always loved maps and hate not having them.  Hubby has teased me during many a car trip when I don’t listen to the GPS or when I question its motives.  (Secretly I harbor a slight distrust of everything it says – for good reason.)

Spidey giving me the business in F.A.O. Schwarz.

Before we left, a friend of mine did collect some AAA contraband for us – we met in the parking lot like two CIA informants exchanging valuable data.  I later chowed some humble pie while reading the very knowledgeable AAA Tour Guide in the car, discovering such modern wonders as a ferry terminal, restaurant reviews, and detailed descriptions of how to spend a day in the city.

The nail in the coffin was when my GPS committed treason and tried to take me to Brooklyn instead of the Guggenheim in Manhattan.  I gave the Manhattan map to my mom and said, “Get us there – you’re in charge of this now!”  In fact, I used that daggone map so much I hardly ever put it away in my bag.  Alright already.  AAA, you saved our hind-ends, you non-dinosaur, you.

Waiting in line outside the Guggenheim Museum.

Continuing from yesterday’s post about the first part of our trip, on Friday we went back into the city for a second round.  I debated internally for a while, wondering if I really wanted to front the cash to get back into Manhattan again, then decided we needed to live it up while we were there.  After all, I had no idea when we’d ever make it back!

We relaxed a little that morning, having no timetable except to get back to Maryland sometime that evening.  My mom, son and I took a leisurely breakfast in the hotel lobby – he watched Sponge Bob while Mom and I got on Facebook and drank coffee.  We went for a swim in the hotel’s heated pool, then went back upstairs to get ready.  My son practiced irritating everyone while running around the room in his undies, and in due time we were ready to go.

We decided to drive into the city that day since riding the ferry the day before had been a $72 round trip for the four adults.  Parking garages in Manhattan are outrageous, but I felt like a bargain shopper when it came to only $38.  I didn’t mind driving in the city either, as my mom was navigating with said AAA map and I had 3.5 years of D.C. commuting under my belt.

The Guggenheim Rotunda.

Consulting the AAA Tour Guide again, we decided to split up — Mom and Hubby took our son to the American Natural History Museum, while my sister and I drove to the east side of Central Park for the Metropolitan Museum of Art and the Solomon R. Guggenheim Museum.  These things were not like D.C. in that they were not free.  Chaaa-ching.

I am not even a pseudo-fan of abstract art, but I love the architecture of Frank Lloyd Wright, who designed the Guggenheim.  Being there just made me happy.  You aren’t allowed to take pictures from anywhere but the first level, but I was glad to have at least a few to take home.  I did enjoy the impressionism collection, and the portrait photography of Rineke Dijkstra was beautiful.

About the time that I was cruising the gift shop, I got a text from my husband saying our 5-year-old son was “losing his mind,” so the museum visits came to a speedy end. Thankfully, the Guggenheim was small enough that I had seen the entire collection.

My sister and I met up, walked past Central Park, and went back to the parking garage.  There she is, that little cutie.

A peek into Central Park.

With a little help from the GPS and my mom’s navigating skills, we went back to New Jersey through the Lincoln Tunnel, and got right on the turnpike without incident.  I was pleasantly surprised to see that New York’s 4:30 p.m. traffic was nowhere near as bad as D.C.’s.  I had figured we would sit within two miles of the city for the next hour or so, but we hardly hit any back-ups at all.

And now, we wait for bloodwork to be done, results to come in, the doctor to call, and then to hear about treatment and costs.  We are in a very hope-filled place — finally.

… And maybe, just maybe, I will consider a AAA membership.

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“we will find it” – the new york journey

“You have loosed my sackcloth and clothed me with gladness.”  (Psalm 30:11)

The Rotunda at the Guggenheim Museum

 

What a wonderful trip to New York we had.  I have to admit, I was a little apprehensive about the idea a week or two ago, given my history of “bad luck” and “omens” in NYC (an old college thing I really don’t need to get into), but the Big Apple has redeemed itself for me.

Last Tuesday, I filled out my online patient questionnaire for my August 15th phone consultation with Dr. Jeffrey Braverman, a reproductive immunologist in New York.  Much to my surprise, he called me about an hour or so later, even though it was only the 7th!  I said, as the kids were running wild through the background, “Oh!  I didn’t expect your call today!”  His reply was a very friendly, “Most people don’t.”  I can only assume he goes ahead with phone calls as soon as he has read the medical history and has a free time slot.

On that phone call, he told me that he didn’t think my MTHFR genetics were causing me to miscarry, as that would have caused every pregnancy to fail.  I felt a slight disappointment inside, but then he said that he definitely thought there was something immunologic going on.  He told me to go ahead and come to New York, maybe go see a Broadway show, and let him worry about the rest.

Dinner at Da Gennaro in Little Italy.

When he put me through to his scheduling desk, they told me that they had an opening on Thursday (as in, two days away), or that they could see me on September 4th.  I whispered to my husband that they could see me then, and he said, “Go for it!”  So commenced the scramble – the phone calls to family, the Internet searches for hotels and how best to manage getting in and out of Manhattan, the packing, and finding someone to watch the cat.  My friend with a AAA membership got me two tour guides and a series of New York/New Jersey maps.  Wednesday morning, I drove my two-year-old (whom I love dearly but who rarely behaves) an hour west to meet her Nana and spend a few days with her and Grandpa.  Wednesday evening, we drove to Maryland to spend the night at my mom’s.  She and my 17-year-old sister came to NYC with us the next day.

Thursday, August 9th, we hopped into the car – me, my husband, our 5-year-old son (who expressed his enthusiasm best when he said, “I’ve never been to New York in my whole big life!”), my mom, and my sister.  I am so grateful that these two ladies came along.  It would not have been the same without them, and we’d probably be lost in Brooklyn to this day.

We drove from their house to Port Imperial in Weehawken, New Jersey, to take the ferry across the Hudson River.  It was windy and hard to get a picture, so eyes closed is what we got.

Crossing the Hudson River to midtown Manhattan.

 

From the ferry terminal, we rode a free bus to the corner of 57th Street and 5th avenue, one block from F.A.O. Schwarz.  I had memories of being there as a kid and was really excited to take my son.  Unfortunately, it is much smaller these days (only two levels), but he still had fun picking out a couple of battle droids.  From there, my husband and I rode the subway to 23rd Street to go to Dr. Braverman’s office, while my mom and sister took our son to Central Park.

Sure, a picture with you is definitely worth $2.00!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 
 
 

 

The meeting with Dr. Braverman was great.  I couldn’t have asked for anything better and I wouldn’t have changed a thing.  I am not even sure if I have fully comprehended the amazing thing that occurred there.  It’s still sinking in: a doctor told me he would help me.  A doctor me he could help me.  A doctor said, “Whatever’s wrong, we will find it.”  He knew what he was going to test me for, and he knew how to fix it.  A doctor told me he would be able to treat me, and that I would have more children.  Oh my word!

All the other doctors have left me hopeless, waging war against unknown odds… sending me out the door with no words but “Keep trying!”  Telling me that I will have more kids but not being able to tell me why I keep failing at it.  The more I have read from women like me, the more I hear a resounding frustration with the current medical approach to recurrent pregnancy loss.  In fact, it’s not even very “current” at all, since the mainstream protocol among reproductive endocrinologists is based upon guidelines from 2001.  A lot has changed, and it’s time the American College of Obstetricians and Gynecologists caught up!

Dr. Braverman was a very likeable fellow, and seemed to me more like your average, well-dressed, New York resident than a doctor!  He didn’t wear a white jacket, he made jokes about me having violent tendencies (upon seeing my husband’s arm in a sling – a softball injury, just for the record!), and pulled an iced coffee from a paper bag while we sat with him.  Falling asleep during our appointment “would be embAArrassing,” he said (and you have to put that New York accent on the “A,” just like everyone does when they say my name, “SAAra.”)

Looking at my history, he told me he was going to test me for a few different things: HLA genes, HLA antibodies, inherited inflammatory conditions, and some sort of sugar test.  I won’t attempt to explain what HLA genetics is all about, but if you’re interested, you can read about it and watch his video on their Web site.  It basically affects how a mother’s body recognizes the baby – whether as “self” or “foreign.”  And if the right message doesn’t get through, the immune system will go after the embryo just as it would a virus or cancer cells.

When I asked him his thoughts on me being sick with the two 16-week miscarriages we had, he said that it’s logical I would have felt ill if my immune system had been activated.  All other doctors said, “Usually it’s a good sign if you’re sick,” but in my gut, I always felt it was related to my losses, since I wasn’t sick with the children who survived.  For once, a doctor resonated with what I had always intuited as a mother.

Before I left, Dr. Braverman also performed a sonogram to measure blood-flow in my uterus.  He showed me on-screen that the blood was having a hard time moving through the wall of the uterus.  He said the vessels there seem to be very restricted, and it’s a finding we need to keep in mind for the future.  He explained that inflammation, brought on by an immune response, would constrict the vessels, or that it could be a sign of endometriosis.  It will require more analysis later.

We left his office that day very encouraged and feeling hopeful for the first time.  It literally does feel like a “sackcloth” has been removed.  A weight has been lifted; we aren’t carrying around this heavy cloak that feels like impending death for all future pregnancies.  And I don’t just say that to be dramatic or something… it’s just how it feels when you’ve miscarried so much it almost becomes a way of life.

And so, as we left the city that night, having gorged ourselves on homemade food in Little Italy and traipsing through Soho and Times Square, I felt at peace.  The city, scarred yet standing resilient above her ashes, looked beautiful and vibrant to me.  The breeze on the top of the ferry was cool and refreshing, and I thanked God.  I thanked Him for leading me to this doctor, for the fun memories we were making, for the beauty and fullness of life we were enjoying.  New York now holds happy thoughts for me … and now it’s up to her – she’s got the key that may figure this whole big thing out.

“But You heard the voice of my pleas for mercy when I cried to You for help.”  (Psalm 31:22)

Posted in miscarriage, the love of Christ | Tagged , , | 2 Comments