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We’re back!

28 Nov

So after a long hiatus from trying and failing we are back to trying again to get this family started.   Since it’s been so long since I’ve posted I feel like I should give a recap of what’s been going on.  After 5 consecutive pregnancy losses (each at 8-10 weeks) we dragged ourselves to the Alan Beers Center in August to look at possible immunology causes and treatments.  According to their nurses they have an 85% success rate, that is IF you follow all their recommendations.  So we bit the bullet and went for it.  After spending thousands on blood tests we were told I had elevated Natural Killer Cells and low Leukocyte Antibodies.  Based on this we were advised to go to Mexico twice for Leukocyte Immune Therapy to treat both issues.

We did it (see previous post) with two trips to Mexico and got retested to see if our levels improved.  Our test results came back today and (drumroll) our numbers are excellent now!

  • LAD
    Before :19.7
    Now: 95.9 (Excellent!  We were just shooting for 50 to be in the “healthy” range.)
  • NK Assay 50:1
    Before: 21
    Now: 14.5 (normal, no longer elevated)
  • NK Assay 25:1
    Before: 11
    Now: 7.1(normal, no longer elevated)
The only test number that is still in the problem zone is my CD56 ( These are the NK cells in the uterus) They went from 19 to 17.8 (and should be 12 or less).  Because we have elevated CD56, they want us to do an infusion of IVIG if/when I get a positive pregnancy test. This is supposed to help”calm” my killer immune response in the uterus during pregnancy.  I am not at all excited to do this one as IVIG still creeps me out a bit plus it is pricey, $2500 per infusion.
I started Femara this month to up my odds (my last three pregnancies happened in month 2 on Femara).  Here’s hoping we get lucky in the first few months again.
On the emotional front I’ve just been crashing.  The anxiety from waiting for all the treatments and tests and wondering if any of this makes any difference and if we we will EVER have a healthy baby is back in full force.  Sometimes it was even hard to read others’ blogs on the subject which is why I stayed away.
January will mark our four year anniversary for trying for a baby.  With each loss I felt my own level of confidence and satisfaction with life just plummet further.  Four years later, this whole thing has gone from fun to a complete nightmare full of humiliation, heartbreak and a constant fear of time running out.
Right now I am trying to think positive, relax and get into a low stress mode that is more conducive to baby making.  According to my fertility friend calendar my peak day will be on Thursday of this week.

Back from Nogales

9 Oct

We’re back!  We made the trip in less than 24 hours for our first round of LIT.  We need to have our second treatment in 3-5 weeks.  The treatment itself is not a big deal.  I got two injections which took less than 5 minutes.  The overhead was another story.  Crossing the US/Mexico border, visiting a random border town in Mexico, meeting all new faces may of whom spoke only broken English, definitely edgy and out there.

Here is a step-by-step of how it all went down:

1. We waited in Arizona for the van at the McDonalds at the scheduled time (11 AM).  (I skipped the whole fast food thing as I had an AMAZING breakfast at our hotel before we left.  I am still thinking about those waffles.  Mr. Star was fasting, but he never eats breakfast anyway so he wasn’t bothered)

2. We met Cesar our driver.  He was our guide for the day and picked us up in a Honda Odyssey.  He was a few minutes late so we were a bit nervous.  That particular location has zero cell service which didn’t help.  Mr. Star used GoogleTalk via the internet roaming to call the clinic and confirm he was coming which was reassuring.

3. We drove across the border through the gates.  We got some glances by the security but noone stopped us.  Apparently Mexico doesn’t check passports or IDs for people coming in.  The border itself is a fence over 30 feet high with rough terrain on both sides.

4.  We drove through the town of Nogales to the clinic.  When you enter you definitely feel like you’ve left the US and are now in a much lower income country as the roads are suddenly much crappier and the phone and electrical wiring is exposed and appears to be hung everywhere.  There is a lot of foot traffic and brightly painted cement buildings closed together with signs in Spanish.

5. We arrived at the clinic which is one of many offices that share the building. Cesar our guide walked us up through the lobby to the clinic on the second floor and we waited in the waiting room looking at the many photos of babies on the wall.

They smiled at us and told us to wait.  It seemed like we were the only non-Mexicans there and everyone was speaking Spanish.  We waited a good thirty minutes before the receptionist asked us to come back.  In the meantime I burned through their magazine collection including old issues of National Geographic and an issue of the local paper (in Spanish) including an ad for the clinic.

6. We meet Dr. Quiroga who asks us if we speak Spanish.  He is relieved when Mr. Star pipes up fluently, but then I let him know that I only speak a little.    In my attempt to practice my Spanish I answered some of his questions in Spanish, but it was weird.  It felt really odd to be turning a conversation about miscarriages into a Spanish lesson.  Fortunately it was just a screening and he got all the information he needed from our paperwork.

7. Mr. Star did his blood draw in the room next door which went smoothly.  He chatted away with the nurse in Spanish (lucky because she doesn’t speak English) and then we were done.  They took the blood and started the cleansing process to make the injections which takes about an hour.  It looks like the blood vials just get processed in the giant machine that was in the same room.

8.  Our driver, Cesar picked us up right afterwards and drove us to lunch across town.  He took us to a really nice restaurant called “La Roca” that had white table cloths and waiters in white jackets and bow ties.  It was a bit out of the way for walking so I was grateful he drove us there.

 There was even an old guy taking polaroids you could by, as if you were eating there to celebrate a special occasion.  I couldn’t resist the cheesiness so we got one.  The food was great and it almost felt like we were on vacation.

9.  Right at the end of the hour and after lunch Cesar picked us up and whisked us back to the clinic where I had the injections.  The needles with the cells were very small and the injections just went below the skin.  It was weird but not too painful.  Still, I was SO relieved it was over as I had really worked myself up about it.  The last visit for the injections was so quick Cesar just waited out front in the car and he was ready to take us back right away.

10.  We made our final cross back to the US sitting in the van watching the carnival atmosphere.  People were walking up and down the line of cars selling popsicles, music CDs and statues of the virgin Mary.  I wish I got a photo of the last one because it looked really funny.  When we got to the border the US agent asked what we were doing in Mexico.  Cesar said we were at “the clinic”.  I wondered if he knew what that meant.  He asked us then if we worked with “an agency”.  Mr. Star and I looked at each other not sure what he meant.  We answered “yes” and the agent seemed satisfied and moved us along very politely.

That was pretty much it.  We spent the rest of the day just killing time before our flight geocaching, site seeing at the national park and taking funny photos of cheesy road sign animal art.  I will let you all know how it goes.  Ultimately time will tell if this adventure amounted to anything more than a bizarre experience.

Tumacácori National Historical Park

Random Rooster Road Sign

Buen Viaje!

6 Oct

We leave tomorrow night for immunology treatment number one of LIT in Mexico. I am a little nervous about the whole process.  I am most nervous I will forget something important and then for some reason we get there and they can’t do the procedure.  When I get there I am sure I will get nervous about  everything else, like being poked with needle and traveling across the US/Mexico border with a flight to catch.

One of the fun parts of this is that we will get picked up in a van at the McDonald’s in Arizona near the Mexican border.   Awesome!  There’s nothing weird or sketchy about that, right?    The funny part is Mr. Star is not allowed to eat any greasy food prior to giving his “donation”.  So he will have to resist while we wait for the van.  Meanwhile I can go crazy if I want, go figure…

Here’s a photo of the pickup van..

Actually they sent us a long list of do’s and don’ts:

Instructions before receiving LIT:

  • Do not take any antihistamines (for both of you)
  • Do not drink alcohol. (for both of you)
  • Do not eat greasy food the day before (only for the donor)
  • Fast 5 hours before donating (only juice and water are allowed) (only for the donor)
  • Do not take any herbal treatments or herbal tea (for both of you)
  • Do not take any medicine to avoid flight sickness (for both of you)
  • Do not use any nasal spray. (for both of you)

After LIT you won’t be able to:

  • Work out in an exercise where you have to move your arms while you have the LIT reaction.
  • Be under the sun for 3 days after LIT.
  • Swim in the pool for 3 days after LIT or while you have the LIT reaction.
  • Take antihistamines flu medicines, nasal spray, herbal remedies, tea (for 3 weeks during LIT treatment)
  • Drink alcohol (one glass only is allowed).
  • Do not apply any lotion, cream, soap nor hydrocortisone on the LIT area. (while you have LIT reaction).

Here’s where we will be.

According to their site the clinic is the creme building.

Fingers crossed it all turns out ok and maybe even works!

Sidenote: Now that I am immersing myself in all things immunology I also borrowed some reading for the trip.   It is the well known book that I managed to not read until now called “Is Your Body Baby Friendly” (http://babyfriendlybook.com/).

Since I always knew that the answer to that question was a resounding “NO!” I never bothered to read it, skeptical of the whole immunology thing (esp. since my doctor didn’t support it).  Now that I am buying into it I figure it is about time to understand the science and rationale behind these treatments.  It is fascinating and focuses heavily on repeat loss and situations like mine.  Has anyone else read it?

Mexico here we come!

26 Sep

Thank you all for your posts!  After much thought and consideration we’ve made the decision to do the Leukocyte Immune Therapy in Nogales, Mexico.  It sounded really scary at first, but the more I’ve learned the more I am optimistic that it is exactly what we need right now and there is no reason to be scared.

Since my last post I’ve met several people who have either done LIT and had success or know others who have.  In fact when I raised my concern at my last Resolve support group that is very familiar with immunology treatments they thought it sounded quite normal and common.  I was concerned that it was not FDA approved, but as they pointed out, neither are a lot of treatments that are used for infertility like intralipids and IVIG.  In fact even the Femara I used to get pregnant on my last three pregnancies says right on the bottle that it should not be used for fertility.  It’s technically only approved for treating breast cancer.   Bottom line is I don’t need to get all bent over the FDA approval.

I was also weirded out because we had to go to another country, but I’ve since found that there are clinics all over the world that do it including in Canada, Latin America, Europe and Asia.  I think I’d prefer to go to Canada and make it into a long weekend, but to be treated in Canada you need to be a Canadian citizen and covered under their national health insurance.  We are sticking with the clinic in Mexico because they accept patients from around the world and they work directly with our clinic so it is logistically easiest.

We now know three couples who did the same treatment in Mexico and are either pregnant or already had children as a result.   We’ll see what happens, but I am feeling quite hopeful that that this will help us more than IVF or IVF with PGD ever could.  Given our last two pregnancies that were tested came back normal,  my gut tells me it is not a chromosomal issue and the immune system issues really make a lot of sense.  We may not even need IVF (fingers crossed).

Based on the comments I feel like a pioneer stepping out into new territory.  I’ve gone a full 360 from thinking there was no hope to now I can’t wait to go and see my results!

On a funny note, did anyone see Weekend Update on Saturday Night Live last weekend.  (To jump to the joke go to 34:50).  Seth Meyers hit the nail on the head in a funny way with Facebook.

“On Thursday Facebook announced a new change to its interface called Timeline which will let users share pictures and videos in real time.  Because we’ve all been thinking Come at me faster other people’s ultrasounds!

The status text reads “Hey, look at my baby.  OMG!  He looks just like my Dad.  I’m so excited!”.  Hilarious.

LIT in Mexico, really?

14 Sep

We had our first meeting with the Immunology Treatment doctor today.  I had some issues with the doctor who seemed to be repeating a lot of things we had already heard before and at other times going into great detail about things that we didn’t need to be concerned about.  It seemed like he hadn’t read our records before the meeting which was also off putting.  In the end it sounds like most of our tests came back normal.  He found my natural killer cells were “slightly elevated” and recommended a intralipid infusion to treat it.  He seemed to think IVIG (the really expensive treatment wasn’t necessary).  I was happy with his suggestions that seemed quite reasonable, until he mentioned the last treatment, lymphocyte immunotherapy (LIT).  The treatment takes white blood cells from Mr. Star, washes them and then later infuses them into me.  Here is a fuller description of what it is-lymphocyte immunotherapy (LIT)

It sounds scary already, but the extra fun part is that it is no longer available in the US.  His recommendation was to go to a clinic that they partner with on the US border with Mexico.  I met someone in my RESOLVE support group that did just that.  We all sat on the edge of our seats as she described her experience in disbelief.   I assumed it was for infertility because her issue was that she couldn’t conceive even after IVF and they seemed at the end of the road having tried for 5 years and willing to try anything.
I can’t believe this is what is recommended for me, twice!  Meanwhile we are paying a lot of money for all these tests and for the consultation with this doctor to tell us this stuff.  I would really like to get a second opinion on this, from someone with experience with using immune therapy to treat repeat loss.  I just didn’t feel confident in him.  I also feel really weird about the whole Mexico thing.
I feel like I can’t really talk about it with anyone because it sounds so crazy.  I can’t find much information about it online either.  How safe is it?  Is there any research showing it helps?  The one study I found showed that patients with/without the treatment had the same rate of success (which is what my RE told me long ago).  I am really curious why they stopped doing the treatment in the US.  He claims it exists in other countries, and I have seen evidence that they do it in Europe and Asia (London and Japan, esp.), but  it seems so questionable to do something so out there.
So here I am, feeling a bit stuck on what to do next.  I could try this crazy thing (assuming Mr. Star is up for it) and move forward, or I could just try again the same old way, or maybe we should just throw up our hands and adopt or get a surrogate.  I really don’t know at this point.  With the exception of the one couple from my support group that did it (and they later had a miscarriage after 5 years of not conceiving) I don’t know of anyone else who did, and more importantly anyone else who had any success with it.
It’s Mr. Star’s birthday so I will try hard NOT to dominate our big dinner out at Red Lobster talking about this.  Yes, of ALL the restaurants in the San Francisco Bay Area, Red Lobster is his favorite and where he always wants to spend his birthday.  The funny thing is, the closest one is in Milpitas a good 25 minutes away. Meanwhile there are top Zagat rated gourmet restaurants so close by.  I have to wait until my birthday for those though ;  )
After today’s consultation I was just ready to throw in the towel and say we are at the end of the medical road, but somehow a few hours later I’ve cooled down.  I’ve reminded myself of my gay friends and their kids and how if they can do it, one way or another so can we.  It will happen somehow, just not sure which way at this point.