Back on the Meds

Almost immediately after our meeting with the perinatalogist, I went off the Lovenox and started tapering off the prednisone.  Then last Thursday, while on vacation and on my last day of prednisone, I woke up completely covered in hives.  I've had hives in my life before and they have always been related to stress.  Since I was on vacation, I doubted that.  Additionally, the hives covered my thighs, my stomach, my back, my arms, my hands, and were in between my fingers.  

Despite being in another country, I called my doctor on my cell phone and got his lame opinion that I must have been "exposed to something" on the trip and his good advice to go back on the full dose of the prednisone.   Within two hours, the really bad hives on my hands began to recede.  6 days later, I still have the bumps, but they are not "hive-y."

I also decided at that moment that I'm going to stay on the meds as long as I can.  I did a little mental calculation, which is the worst error:  to be on the medications and not need them or to to be off the medication and need them?  

If I'm on the medication and I don't need them, what is the worst that could happen?  Well, for the Lovenox, the only harm is the amount of money I'm paying each month ($50) to be on the meds.  It will not harm the babies or me, even if I don't need them.  For the prednisone, it may make me more susceptible to colds and stretch marks, but again, it won't hurt the babies.  

If I'm NOT on the medication and I actually do need to be on them, what is the worst that could happen?  Well, the worst that could happen is that the babies die.  

So let's compare the costs of being "wrong" in this situation:  $200 for the additional medication vs.  my babies die.  Even as cheap as I am, the $200 seems like a lot less costly than losing my children.  

I was all prepared yesterday to get fiesty with my OBs on my insistance on staying on the meds, when I was lucky enough to get the OB in the practice who has the most experience with immunology.  She absolutely no problem with me staying on the loveonx and wrote me a 6 month prescription.  She has decided that we need to get me off the prednisone (I agree) but we have to do it much, much, much  slower than my previous tapering method. (It is likely that the hives came from my body's withdrawal from the meds)  It will take me nearly 6 weeks to get off the prednisone now.  What I love about that is that we'll be close to 20 weeks or more when I'm off the prednisone and, God Forbid, if I do have a much more serious auto-immune problem than I thought, the babies will be very well established by then.  Also, if I get another outbreak of hives, we go even slower of a taper than that.  

So there we are.  

I am gaining weight at about the right pace.  I'm a few pounds behind my goal of 25 lbs by 20 weeks so I've got to pick it up a bit.  

I'm also hoping to post a bit more.  I do have some DE thoughts I want to work through.  And I have no idea why, but the NY Times continues its trend of writing stories that are highly relevant to what I am dealing with right now.  I hope we can discuss this article on what scientists are finding out about genes and their effects on personality, behavior and even height.  The long and short of it:  Personality, behavior and physical characteristics are all inherited.  However, the genes' role in "causing" these outcomes?  Not so much.  Go figure.  It's  A LOT more complicated than you are the way you are because you got half your genes from two other people.  It is not all environment, but it is most definitely not all genes.  

Just some food for thought to encourage you to read that long article, since I think it's highly relevant to us.  They have found the 12?  8?  strongest genes for predicting height in people's genomes.  And do you know how much variance the genes predict of people's height?  2%.  TWO PERCENT!!  One of the most inheritable, objective characteristics of people and genes predict 2% of how tall one will be.  (That means 98% of someone's height is predicted by something *other* than these genes)  Yeah.  I thought it was interesting, too.

Ok.  I'm posting early and it's time for breakfast number one.  

Perfectly Normal

We had our first trimester screen yesterday and the news was good.  Or, as I keep repeating in my head, the perinatologist told us that everything was "perfectly normal."  

I love perfectly normal.  I have absolutely no interest in "perfect" alone.  It's an impossible goal and statistically unrealistic.  We don't live in Lake Woebegone;  most children are "average". In my world, average is not only good, it's wonderful.  

So yes, heart rates for both twins at 160 something.  I was 11 weeks 5 days yesterday and they were measuring 11w6d and 12w0d. Their nuchal folds are thin.  Perfectly normal.  

I also had a wonderful conversation with our perinatologist, a man whom I now consider the best doctor I have.  As a research scientist, I don't expect doctors 1) to be up to date on the research, much less 2) able to effectively critique it.  Indeed, when I brought my OB a copy of Dr. Luke's research on the effectiveness of her nutritional program from a top peer reviewed journal, I attached my own critique of the study's strengths and weaknesses.  (Overall, my critique is that the effect sizes are so large that her program should be given serious consideration for mothers of twins) Anyhoo, my perinatologist was able to use his knowledge of the research to logically convince me that I can go off the Lovenox at the end of the first trimester (Saturday) without harming the babies.  He also said he would support me if I decided to stay on the meds, but there is no research based reason to do so---because I do not have a diagnosed thrombophilia problem.  

I'm not sure all my doctors understand how much I know about evaluating and interpreting research, but I do think that he understands research better than my other doctors.  

So things are moving apace.  I thought everything was going to be ok with the twins, because I am HUNGRY a lot of the day.  And I am TIRED the rest of the time.  I've never been this hungry or tired, so it seemed like all was going the way it should.  

We're off for a family vacation next week.  Happy New Year to everyone!  May we all have an easy year reaching our dreams.

Still Still On!!

It looks like retrieval is going to be on Thursday.  

!!!!

The donor has between 25 and 30 mature follicles.  She's coming back in tomorrow and I think they will trigger whenever it is so that retrieval will be on Thursday.  I am actually quite relieved because we're flying out on Tuesday and I would rather have a day of wiggle room in case there are problems with the flight.  And please don't let me have just cursed the flight by blogging that.

I also learned that they have a pretty standard protocol that is what Beer's recommends and that my real struggle (?) is going to be getting my regular OB to follow Beer's protocol should I be fortunate to get pregnant.  My OB is pretty progressive, so I'm thinking that will work out, too.

In any case, we're packing up the pharmacy and a few clothes and heading out tomorrow.  I'm hoping the hotel has internet so I can check in and let folks know the status.  I still am not convinced this is going to happen.  We'll see.  And we'll definitely hope!!

Getting Ready

We've spent some time this weekend getting ready for the trip.  I took all the medicine out of the cabinet and put it on the counter so I can pack up the small pharmacy to carry on the plane with me.  I would look like a terrorist with all these syringes if it wasn't for the fact that all I could do is make the pilot get a better uterine lining.  At least if I was doing traditional IVF, I could make him or her ovulate.  

I also went through the boatload of books on my bedside table to clean up a bit.  There, I found the Dr. Beer's book on auto-immunity and pregnancy.  Despite being an academic and an infertile turtle (thus reading everything), I found that book very hard to read and understand.  His web site is not much better.  It doesn't help that he's been dead for quite a while, eh?

Nonetheless, it's been a year and a half since the doc's suspected an auto-immune problem and I started looking through the book.  That's where I discovered that the low dose aspirin/prednisone/heparin (or lovenox) regimine that I am on is pretty much the real standard one.  Beer recommends a couple of other transfusions, but those are quite controversial and my problem, if I have one, does not require that.

I generally am skeptical that I have a problem.  I mostly see this as a "can't hurt and might help" approach.  And then I read about rashes, like the massive excema I had during my last pg and have never had before or since, are good indicators that the body is dealing with some "inflammation" from the pregnancy--a sign of an autoimmune problem.

And then I start to freak.  I am using donor eggs because it's obvious my eggs have gone past their use by date.  However, if I have an auto-immune problem, it doesn't matter whose eggs I'm using, there is still going to be a problem and I could not be able to carry my child(ren) to term.

Here is where 1) I love my clinic and 2) I'm glad I reread the book.  I have emailed the clinic several times asking about this problem:  I don't have the MTHFR mutation (I call it the m*ther f*cker mutation), but the excema is still a sign.  They have apparently done additional research and are now running bi-weekly tests on my blood to see how things are going.  This is exactly the protocol from Beer for auto-immune testing before conception.  

Folks, the clinic actually took my questions and concerns seriously.  Holy Cow.  I don't recall that ever happening before.

I also now know what Beer recommends for both protocol and testing during a pregnancy.  The heparin should last until 34 weeks.  Testing for progesterone among other tests should continue weekly until 12 weeks.  Ultrasounds should occur every 2 weeks after week 6 for the entire pregnancy to see how the placenta and the baby are developing.  I know this is a lot of monitoring.  But if something is going wrong, we need to know soon enough to adjust my meds so I don't lose the baby.

In any case, things don't seem so carefree any more.  I am happy that I am at a place that I trust and who will listen to me.  But I worry about being more of a freak than I originally thought.

Tune in tomorrow when we find out the donor's next follicle count and when she will trigger.  It's getting kind of crazy!!

Testing Continues

I went back in today for my second ultrasound and bloodwork.  My lining is 7 and I do have a triple stripe.  (yay!)

The clinic in San Diego has decided to monitor my blood work more closely this go round, so they are running several different tests including a CBC and other clotting measures (I think).  I'm on the auto-immunie pregnancy protocol despite the fact that I do not have the MTHFR (which I pronouce to myself in quite profane terms) mutation.  Nonetheless, 8 miscarriage and only one for sure we know is genetically caused could be an indication of auto-immune problems.

I've requested their input on what we should do in regards to staying on heparin and prednisone.   love this clinic because they've decided to monitor me every two weeks while I'm on the auto-immune meds.  I *think* that if they see changes after I get pg, they'll keep me on the meds and if they don't, they'll take me off at 12 weeks.  

I'm just speculating here, but since I've never been monitored before while on heparin and I've asked them about using heparin for a limited time or a full time, it makes sense to me. 

Plus as DE Daddy says, more monitoring can't be bad.