Archive | September, 2011

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.

Step 5 of Immunology Testing: Endometrial biopsy

12 Sep

This last immunology test wouldn’t be complete without some drama,naturally. I was all opened up down there but they couldn’t get the tube in to grab the sample. Apparently they are out if the tubes that may have fit better. Any whoo, Plan B is for me to drink a lot of water to expand my bladder which will help. So I drank all the water and took advantage if the wait time to enjoy the massive September issue if Vogue. We did a bladder check (via abdominal ultrasound) and the verdict was more water. So now I am back to waiting… Go bladder! Do your thing! SOOOOO looking forward to getting past this step. I naively thought thus would quick. They warned me it was painful too, cranky, cranky…

Update.  It’s OVER!  Hallelujah!  That REALLY sucked and was quite painful.  I deserve a drink after making it through that test.  I PRAY they go enough tissue and we’re done with that.

What NOT to say

8 Sep

I was heading in to Safeway this afternoon to grab some milk when I bumped into an acquaintance.  She was excited to see me which perked me up, but then she got straight down to business.  “How is your testing?” she asked.  I had told her my story a few months ago when I was in a very sharing mood.  The question caught me totally off guard, esp. as a first question to start with.  I couldn’t remember exactly how much she already knew so  I just said something vague like “we are still doing the testing, no information yet” (that was my code for “thanks for your concern, now drop it!”).  From there she continued and I quote, “You really should be sure your expectations aren’t too high”.  At that moment my perky demeanor came to a screeching halt.  Seriously?  Are you really saying this to help?  From that point she proceeded to tell me of someone she met that had “lots of trouble for years” (whatever that means) and talked about how she ruined her marriage from wanting a baby too much, crying too much and being suicidally depressed.  Wow!  Thanks for sharing the story!  That really helps!  I hate dumping on people who mean well, but seriously I can’t see how anyone would think advice like “keep your expectations low” and “don’t be like the suicidally depressed person” are really all that helpful.  To boot, the person telling the story had her first child last year.  WTF!