Some Good News for a Change

Today brought some welcome good news.  We can ship our embryos from the West Coast to the East Coast without engaging in a lengthy process with the NY state health department.  The department very recently (within the last week) gave effect to a new policy that will not require us to obtain an exemption letter (the estimated time line on that was anywhere from two weeks to over three months).

The LP and I fastidiously signed and filled out many consent and waiver forms (you have to promise not to sue the people who tell you they could lose or destroy your babies-in-waiting if you want to use a shipping company to do this – and we need a shipping company to do this given that we do not live on either the West Coast or the East Coast) and I have handed over my credit card information.  Now I wait to find out when we can expect wee Gertrude and Alice (I decided not to go with Ernie and Bert even though those embryos resulted in a successful pregnancy; I felt like I was encroaching on her territory after she sweetly told me she’d named her embryos after the cute muppet pair) to make their way across the continent.

In the meantime… I have been trying to find a skilled endometriosis surgeon in my neck of the woods.  I am of the view that having the laparoscopy before any more IVF treatments would be prudent.  The LP is scared of me having surgery and would rather we try without it.  The first time he witnessed me having surgery (D&C number one in January 2011), the surgeon came and told him my blood pressure had dropped dangerously low and they had to give me fluids intravenously and therefore I would have to spend the night in the hospital (despite the earlier advice that I could leave shortly after leaving recovery).

The second time he waited for me to get out recovery after surgery (from D&C number two in September 2013), things were better because I told the doctor about my reaction to general anaesthetic.  But then my blood pressure was checked in the room they carted me into post-recovery and it was something along the lines of 80/50 and the nurse checking on me nearly lost it.  I explained that my “normal” blood pressure ranges between 87-95 over 60-65 so this was not a big deal.  She looked skeptical but when I proved that I could make my way to and from the little girl’s room and that I was not losing buckets of blood, she approved our departure.

In addition to the blood pressure, I puke when waking up from under general anaesthetic.  I should say I dry heave because of course you are never allowed to eat before these events if they are scheduled. The anti-nausea meds work for this little problem so it has never been a huge concern for me.  I am not worried about the idea of having surgery.  I am worried about wasting another embryo because I did not have the surgery and maybe that could have toned down my immune issues and made the difference.

Today I asked the Universe and God if the news about the removal of the exemption letter requirement was a sign that I should follow the LP’s preference and try the FET using Dr. Braverman’s immune protocol without doing the laparoscopy for endometriosis diagnosis/excision first.  I asked for a sign as I was walking to meet the LP to sign a number of consents related to the embryo transportation.  I found myself staring at a decorative plaque in the window of the nearby flower shop.

The sign read “IF YOU ARE LOOKING FOR A SIGN THIS IS IT”.

Really, Universe?  Just like that? Is that my intuition clubbing me over the head or mere coincidence?

On a serious note, I’d love to hear what you would do in my shoes.  So… what would you do?

We have: (a) Reasons; (b) a Protocol; and (c) a Problem

I received our immunological testing report with complete analysis and had a long, helpful telephone conversation with Dr. Jeffrey Braverman yesterday.

There have been rivers of tears and heaps of those impotent “I want to say the right thing – what is the right thing?” looks from the LP, group and individual hugs and “I’m sorry mommy” from the Miracle Toddler (whose miracle status has grown about as many times as the Grinch’s heart that fateful day when he unstole Christmas from Whoville).

My eyes hurt.  My heart hurts.  My bank loves me.  My employer, too, because they know I will never quit and stay home now.

A.  The Reasons

For the sake of anyone who’s been playing along and cares and for anyone who may one day read my blog in hopes of gathering more information about reproductive immunology, haplotypes, HLA mismatches, Natural Killer cell activity, Cytokines and why they all matter, I want to and will share more details about my test results, the analysis and interpretation of them and what it all means.  But not today.   I need time to write that post (you’ll see why) and time to work through my feelings right now (which have circled the earth at least 2.4 times in the past 18 hours).  Please stay tuned.

Non-sequitur: If I am ever in another band, I am going to call it the Angry Cytokines. (Steal this idea and beware, this post and all ideas in it have all rights reserved!)

The brief version to tide you over until the promised post:  I am broken.  The LP and I are not sufficiently mismatched.  My one successful pregnancy created a cell memory that has made the problem worse.  It is incredibly unlikely (read: impossible) that I could ever sustain another pregnancy without serious medical intervention (namely, drugs and a lot of blood tests) and equally serious expense.  Oh, and I probably have endometriosis.  On the good news front, I have no hy-restricing HLAs (meaning my post-live birth recurrent pregnancy loss is not a result of me having developed an immune response to boy babies).

On one hand, this is all very validating.  It explains why I’ve gotten sicker with each of the 6 pregnancies we have had and lost since the Miracle Toddler was born and proves that my gut feeling about that was right not “coincidental” as doctors have told me.  And while my case is difficult, according to Dr. Braverman it is not untreatable (though he said I could lose another pregnancy on the road to us figuring out how best to treat the various issues).

On the other hand, it has ripped a new hole in my heart and reignited my grieving over all that was genetically programmed to make me very unlikely to have children (without a miracle – which apparently was a one-shot deal after all – or a boat load of medical intervention and expense) and over not finding out any of this sooner.  I am having what can be fairly described as a very hard time right now.  I know it will get better but for now I am grieving and processing.

Stay tuned…

B.  The Protocol

There will be more on this in the future post I have promised.  Meanwhile, the skinny is that Dr. Braverman has recommended:

  • Daily injections of Neupogen
  • Oral Steroids – likely Prednisone, 10-20 mg daily
  • Weekly treatments with Intra-lipids for the first FET (if it fails, then IVIg)
  • Daily injections of Lovenox

C.  The Problem

Because there has to be at least one, right?

When at the end of our call I asked about a realistic time frame for getting our embryos imported from the West Coast into New York state, Dr. Braverman admitted he has seen it take upward of three months (he’s also seen it take less time).  The fact that they are donor egg embryos may make this more complicated.

To avoid any more delay, Dr. Braverman suggested I consider consulting with a reproductive endocrinologist in the same state where our embryos are now hanging out in cryopreservation storage.  The trick is that any such doctor must be prepared to follow Braverman’s protocol and prescribe the drugs he instructs, do the testing he requires, etcetera.  He’s the boss, in other words.  Most doctors will not do this.  Our current RE has already said he will not do it.

On our call, Dr. Braverman recommended a doctor he has worked with before, though never with Neupogen among the drugs on the protocol.  I called her clinic.  She is on sabbatical until November.  Of course she is, why wouldn’t she be?  The patient coordinator also told me that the clinic does not prescribe medications for other doctors as a rule.  With some cajoling she nevertheless agreed to email the RE asking if she will work with Dr. Braverman and promised to get back to me.  I wait and see.

I emailed this news to Dr. Braverman and said my current inclination is to try to get the embryos to NY.  I called Biogenetics about this and e-mailed them the LP’s test results for infectious disease screening to see if he will need any further tests.  I wait and see.  This is step one of many to setting this ball in motion.

Meanwhile, Dr. Braverman sent me the name of another doctor in the same state as our embryos.  I called her, too, and had to leave a message.  I wait and see.  (D0 you detect a pattern here?)

I actually burst into tears during one of the times when I was on hold yesterday during the various phone calls that followed my discussion with Dr. Braverman and asked God and the Universe “why?”  Why can’t we  get a break for once?

I have actually thought:  Is this a sign to give up?  Or to do one last IVF with my own eggs at Braverman’s clinic instead of moving our DE embryos?  (Braverman gave us a 5% chance of success at my age and given my diagnoses so that would be a pretty foolish gamble but it’s hard not to give it some thought.  Grief and desperation are powerful motivators.)  I have settled on the fact that my luck is crap and when the going gets rough, my luck gets crappier.  I should know to expect this by now.

< huge sigh >

To Be Continued…

Panic and Dread

I spent portions of the past few days trying to educate myself about human leukocyte antigens (HLAs) and anti-HLA antibodies (of which I have one related to the DQ8 HLA).  I am being charitable when I say it has been painful.

This morning I woke up from a dream in which I was having a very grave and ultimately tearful meeting with a doctor who in my dream was Dr. Jeffrey Braverman notwithstanding the fact that although his voice was perfect, his physical appearance was much altered by my subconscious.  Funny the things our minds can accomplish when they set themselves to it.  I digress.

Panic and dread set in after waking from the moment in my dream when Dr. Braverman (albeit a less hairy, more straight-haired, leaner and clean-shaven version of himself) said that I would be wise to resign myself to the fact that October 21st was not going to bring me the outcome I wanted.  He said there was really no hope of me carrying another child, essentially, suggesting my immune system would not permit it.

By way of context, I understood in the dream that October 21st was my transfer date for one of our last two remaining frozen embryos.  Why October 21st?  Ask my subconscious.  I have no idea.

Suffice to say I was floored and gutted.  Or gutted on the floor.  Whichever, I woke up shaken and upset.  I still am (shaken and upset).  The worst part is that I do not know whether this is my intuition talking or a combination of way too much home research, disrupted sleep, generalized anxiety and an overall shortage of sleep lately (by lately I mean about the last 14 years of my life).

Panic and dread struck a second time this morning as I reviewed the contract for transporting frozen embryos from one side of the continent to the other, specifically into New York state with its strict health department rules.  Among the lines that leapt out at me was one that read “Additional testing and quarantine may be required if donor eggs were used in creating the embryos.”  What additional testing?  What exactly do they mean by quarantine?

Jiminy Crickets!  Can this be any more complicated, overwhelming, stressful, and exhausting? Don’t answer that unless you are prefacing it with an offer of barbiturates.  I need a serious tranquilizer at this point.

I have e-mailed Biogenetics with these questions and “What if the donor’s infectious disease testing was done more than 30 days before our embryos were frozen and the clinic can’t find her for me to pay (out of freaking pocket, I might add) for her to get the testing done again now?”  Or words to that effect.  Because that is another one of the requirements, of course.  Biogenetics’ informed me when I asked last week about timing that test results for infectious diseases (syphilis, the various alphabetical variations of hepatitis, HIV, HTLV and so on) must be dated after the embryos were frozen or not more than 30 days before they were frozen (we’re okay on this front for the LP and I except we may be missing one set of HIV-related tests, I’ve also asked for clarification on that front from Biogenetics).

I had to email the RE at our second clinic (with the embryos) to ask him to send me a copy of one of the LP’s test results because of course it was not included in the records I got in dribs and drabs after seven requests in July.  I wonder what else is not among the records I got by pulling teeth.

I burst into tears for  a moment, feeling completely overwrought this morning after sending all of those e-mails and recalling my dream.

I consoled myself (not really) by e-mailing Dr. Braverman to ask if there was any chance we’d be able to consult with him this week about our test results or if that would likely happen in early September.  So far I have had no response.  I think I will go throw up from anxiety now.

I sure hope you all are having a better Monday morning than I am!

Meeting Team Braverman and Blogger of Just Another Infertility Blog

The LP and I are currently en route back home from a whirlwind trip to New York. Long Island and Manhattan to be specific.  In that time we/I

  • Endured the longest and most expensive taxi ride I’ve ever taken and hopefully will ever take;
  • Ate at one of the greatest Diners of all time;
  • Saw way too many pregnant ladies (see my last post);
  • Met with Dr. Braverman and other members of the team at Braverman IVF and Reproductive Immunology;
  • Had an ultrasound (yours truly only);
  • Had 18 vials of blood drawn (3 for the LP, 15 pour moi);
  • Rode the Long Island Rail Road;
  • Rode the NYC Subway (the LP was impressed with my familiarity with it but a bit peevish about me laughing when he nearly fell because he didn’t set down his bag like a total rookie);
  • Walked around Greenwich Village;
  • Saw Here Lies Love, a musical at the Public Theater written by David Byrne and Fatboy Slim about the rise and fall of Imelda and Ferdinand Marcos; 
  • Met the incredibly lovely, deeply thoughtful, kind, generous and generally amazing blogger of Just Another Infertility Blog (JAIB here) for breakfast (me only, though the LP was equally curious about it and impressed that this meeting stemmed from the often-overwhelming but richly supportive blogosphere network of which I am grateful to be a member); and
  • Thanks entirely to JAIB, I enjoyed a yummy paleo/anti-inflammation friendly (grain-free, dairy-free) breakfast at an amazing West Village eatery and got snacks for the flights home mad the weekend as well as a Paleo blueberry muffin for the LP (who devoured it gratefully).

Starting at the end of my list, it was awesome to connect with JAIB and to discover that we have stuff in common outside of recurrent pregnancy loss and fertility challenges.  I cannot say enough good things about her.  JAIB is a true gem.  Case in point: the meeting was her brainchild, as was the incredible eatery – and she insisted on treating me to breakfast despite my feeble protest). Most importantly, she is genuine, unpretentious and innately kind.  I am so grateful to have met her and hope you will join me in hoping and praying (for those of us who say prayers) that she and her husband bring home their long-awaited baby/ies soon. 

Here Lies Love was amazing.  Don’t take my word for it; the LP thought so, too.  

Now back to the visit with Dr. Braverman.  First of all, we did not have to wait much past our appointment time. It may have started on time, in fact (we were early and I didn’t check what time it was when we were taken back but it was either on time or soon afterward).

I am still not in love with him. However, the visit did reaffirm my decision to seek his assistance and it established for the LP that this doctor is capable and knowledgeable. The LP pointed out that Dr. B had degrees or some kind of certification from 3 universities, including Albert Einstein College of Medicine (the LP was quick to point out that this was particularly impressive since Einstein was not himself a medical doctor).  The LP had a much better impression of Dr. B after our in-person meeting  with him. I have warmed a teeny bit as well but I am keeping a professional emotional distance from any future caregivers at this point for the sake of self-preservation and financial responsibility. 

That said, it is tough not to get hopeful. I thought this was a personal affliction or shortcoming on my part. However, as we scarfed down an appetizer and some drinks yesterday afternoon after our adventurous morning and afternoon,, the LP said “well, there is hope again” about our meeting with expert #3. I am so reticent to embrace that hope. But it is an infectious beast. And it’s allure is intoxicating in a way nothing else is for me. Hence the distance I need to keep from the strongly-opinioned professionals. 

As for the visit itself, it was relatively uneventful. We chatted, we reviewed my recent test results, Dr. B noted that on their own IgE levels are not particularly useful.  He really did not say much about the allergies except to repeat that too many histamines are bad but some are needed for implantation. He suggested we use Claritin every day of any cycle in the future in which we are undergoing treatment but made no other recommendations and seemed unconcerned about my allergy sufferings.

 

He said my ultrasound looked great on the whole, with good uterine blood flow and the only perceptible reduction in blood flow being with my left ovary, which he said is not uncommon.  He noted a cyst on my right ovary which likely was from a recent ovulation and not concerning. He did not see anything so far to suggest endometriosis but would still review my blood work once it comes in for the pattern that can suggest the presence of endometriosis. He does not expect he would recommend urgery in my case, however, even if that pattern is detected given the good blood flow and appearance of my inner bits on the ultrasound. 

Finally, I asked about his protocols for FETs. He said they use many different ones from natural to medicated, with birth control pills for down regulation and without, going straight to estrogen supplementation. We talked about my body not liking the birth control and he said we don’t need to do that then. He volunteered that the success rates show no statistically significant difference between the different protocols he use for FET and that the choice between them largely comes down to personal choice on the part of patients. Natural FETs are unpredictable as to timing to some degree while during medicated ones everyone knows when things are to happen because that is planned  and controlled – the transfer date is chosen, in short.  

Dr. B told us he would be able to discuss our test results and any protocol design he may suggest in about 6 weeks. His nurse who drew our blood said four to six weeks. Other patients of his have kindly told me that the lab sends him results in about ten business days or two weeks.  It is wait and see time.  Again.  I am not in a rush though I would prefer a September to an October start date if we can do a FET because if we stick with Dr. B I’d rather not be travelling to and from NYC in December for monitoring and prescriptions if that can be avoided. 

I do not know yet if we will do any further FET(s) with Dr. Braverman or a RE closer to home with whom we are waiting for a consult. The reasons for considering the RE over Dr. B is convenience and cost.  I have said that if the protocol Dr. B recommends is not too complicated or aggressive and does not require monitoring that could be a problem closer to home I will consider the fourth expert.  If that’s not the case and Dr. B gives us a good chance of success despite whatever findings he makes then I think we will go with him for our next FET.  With only two blastocysts left I am reluctant to start gambling. 

One last really strange but kind of incredible and scary thing happened during our taxi ride to the airport on Friday.  I saw a sign for a psychic and thought about consulting one.  Out of nowhere, like a bolt if lightning, this voice that was not my own but was familiar and heard only inside of me said, clearly and emphatically, “you will have another baby.”  I told the LP about it immediately.  He is usually a skeptic and said I don’t need to see a psychic but that message seemed important and maybe it means something.  

A theme through this post and in my heart is my fear of becoming too hopeful, too invested in dreaming of a future that may have no feasible connection to the present.  Not only do I not need another shattering of my heart and self, I do not know if I can take another loss.  Yet, in writing that I am reminded of the animal spirit guide card I drew earlier this week, the day before we left on the whirlwind tour.  It was the wolverine, my alter ego, whose spirit guidance is “You are tougher than you think.”

I do not know if that is true anymore.   I do not know what to make of the voice saying what it did. Or I may know what it means but not whether I can or want to trust it.  I do know one thing.  I know how to keep putting one foot in front of the other while we wait and see, wait and see…

Testing… Testing…

In preparation for our visit to Long Island (not to see the Long Island Psychic, though that would be fun) and a battery of tests that will be performed after many vials of blood are drawn from the LP and I, I met with my general practitioner (my “family doctor”) this morning.  As an aside, I had not eaten in twelve hours and was really hungry so it was tricky to remember everything I wanted to discuss.  I made a hopeful assumption that she would send me for some tests that require fasting and I could not remember if the rules were no eating after midnight or no eating for 12 hours.  Naturally, it was the former.

Today’s tests included ones recommended by Dr. Braverman (his included the fasting ones), some recommended by my TCM Doctor Acupuncturist and some that my GP threw in for good measure (why not, since we were at it?).  I also got copies of my TSH, T3, T4, IgE and Progesterone results from the past couple of weeks to add to my paperwork collection.

As for the tests, in case anyone is interested, here is what we did today:

  • Complete blood count (CBC)
  • Fasting insulin
  • Fasting glucose
  • Hemoglobin C (HbC)
  • Lipid panel – cholesterol tests, essentially  (I didn’t write down all of the acronyms but I think they are total cholesterol, LDL, HDL and triglycerides)
  • Alanine Aminotransferase (ALT – liver enzymes)
  • C-reactive protein (CRP)
  • Cortisol AM
  • Thyroid-stimulating hormone (TSH) – just to make sure it’s not doing anything crazy
  • RAST (allergy tests – blood) – food panel
  • RAST (allergy tests – blood) – inhalant panel
  • Anti-transglutaminase (I forgot to write this down so I may have missed part of this test’s name)

My GP suggested that the C-reactive protein (CRP) result will likely be high because of my super high IgE levels right now but it might still be informative to a Reproductive Immunologist. She also asked whether Dr. Braverman could prescribe allergy shots for me if he’s an immunologist.  Good question!  I have no idea.  I said I will ask him if he does that.

Apparently the RAST testing can take some time and it’s possible some of the others may take a few days more than usual as well so I may not have the results of most of this testing by Thursday morning when we meet with Dr. Braverman, but I will tell him that I can send them to him by e-mail.  I will also ask if I should copy them to anyone else because so far my observation of Dr. B and e-mail is suggestive of severe ADD and I want to make sure my results end up on my file for when he designs our next DE FET protocol.

The one thing my GP did *not* do was requisition a stool sample for parasites.  She suggested that it was very unlikely I had any of the parasites that would cause elevated IgE levels unless I had been (a) eating uncooked pork products (uh… negative on that. Eww!); or (b) taking up the dietary inclinations of the Inuit, who can sometimes contract the parasites in question (unbelievably, also a negative. I didn’t think Paleo-esque counted).  On that basis, I agreed it probably was not necessary.  Sorry, TCM doc, I’m passing on the pooh tests for now!

I am still waiting on my records from my former RE’s clinics but I have decided to accept that I won’t get those in time for the Dr. Braverman consult and that in all likelihood nothing serious will turn on that anyway.  I’m still annoyed but I’ve gotten over the urge to throat punch the staff at each clinic.  Life, thankfully, has gotten on with getting on.

That is it for this boring update.  Hopefully the next time you hear from me I will be reporting on a short stint in New York City and a short wait to see Dr. Braverman!

Not In Love but… Willing to Put One Foot in Front of the Other

We had our first telephone consult with the infamous Dr. Braverman today.  And it went… okay.

We waited 40 minutes past our appointment time.  And despite being told that I had to complete his 14-page questionnaire, he had neither received it (I was told it went directly to him for privacy reasons) nor read it. If I had not known this doctor practiced in NY, I would have been annoyed by this point.  Instead, the LP and I just exchanged eye rolls at opportune moments during the teleconference and at one point I wrote down “NYer” on my notepad and the LP nodded and rolled his eyes.

At the end of the call he had promised to transfer us to someone who would confirm that the person who collects the blood samples for the immunological testing is in his lab next week Thursday for our appointment.  Instead, he hung up hastily after saying he needed to take another call.  Oops.  No big deal, I called back and confirmed (for a second time) that all was in place.  I’ve read many complaints about the staff at this clinic but so far apart from a long wait to have my initial calls returned, the staff I’ve dealt with have been very helpful and mostly attentive.

The jury is still out on Dr. Braverman, but I went into this knowing I do not need to like this man, I just need to see if I can trust him.  Unlike many of the wonderful women I have encountered online who are [now pregnant  or with living children despite immune issues and RPL histories not unlike my own] patients or former patients of Dr. B, I cannot say I am in love.  At least not yet.  I am skeptical that I ever will be.  I think the cynicism that came from having defended doctors when they got into legal troubles and from being onto our third reproductive specialist, 100% out-of-pocket, in 18 months might make me a “tough customer” as the kids on Arthur would say (I never watched that show before I had the MT, who has it downloaded on an iPad… yes, I let my toddler watch tv shows on an iPad. Sue me.).

Enough mockery and negativity.  On to what was said.

First, Dr. B. thinks I have “an implantation problem” (not because he read the 14 pages of history that it took me two and a half hours to complete, but because I can now, in my vast experience yapping with specialists, narrow the essential evidence down to a very short synopsis and some key facts). Okay, I mean it this time, enough negativity about him being completely unprepared to talk with us today.

Second, Dr. B does not think much of the high IgE levels other than to say I may have hyper-IgE syndrome which involves an excessive histamine release, which can lead to implantation problems.  He agreed when I said it’s hard to know whether there is a causal connection or a correlation.  He said that women need some histamine to permit implantation but too much can be a problem.  Unfortunately, there is no way to test for histamine (???).  He also said we can use stronger drugs than steroids (???). He kind of meandered after this and mentioned two types of immune issues, being TH2 or antibody-based and TH1 or cellular-based, and suggested that hyper-IgE would suggest the former.

Third, he affirmed my decision not to do any more embryo transfers until we have a diagnosis. In his view without a diagnosis you’re basically guessing and cannot make a meaningful prognosis or effective plan (my words, not his).

I’m not sure that is true for anyone who does not have some kind of immune issue happening.  I don’t even know if my issues are immunological or just look that way, by which I mean I’m not sure which is the chicken and which is the egg or if they are apples and oranges and just seem to both look like pears at the moment.  I’m not sure I’m convinced that all of the immunological testing he will have us do is of real value.  But I am doing it.  One foot in front of the other.  There is something to be learned here and learning is what Azulito has sent me forth to do.  So do it I shall.

Fourth, the plan is to do all of the testing he prescribes, plan a protocol, do my next FET at his clinic and hope for  a positive outcome.  If that happens the next plan is either for me to find an ObGyn in my city who will work with me to have monitoring and/or prescribing done (that, I can safely say, is not going to be easy and may prove impossible) or for me to return to New York at 6 weeks and 10 weeks so he can do my monitoring and prescribe me meds accordingly (New York state law requires patients be physically present for Dr. B. to write them scripts).

So much for my retirement plan.  Oh yeah, what retirement plan?

Finally, I asked about what blood tests I might ask my doctor to do here.  He suggested fasting glucose, fasting insulin and hemoglobin C.  In addition to that my TCM/Acupuncturist suggested I ask my doctor to test my liver enzyme levels (ALT and CRP) and Parasite testing.  As an aside, she also suggested I consider stopping the Singulair.  I did.  No more dizziness – yay!  It wasn’t doing anything as far as I could tell anyway and never did last time I was prescribed it, either.

All in all, I do not care if the LP and I are not enamoured with Dr. Braverman as many other patients are.  And I am sure he would  not give it a nanosecond’s thought (nor should he).  If he can help us get and stay pregnant, I will pledge allegiance.  And say only nice things.  I promise.

Okay, I may still make the odd crack about him being very much a New Yorker.  Who can resist? (I apologize to all of you New Yorkers, some of whom I am deeply fond.  I say all of this affectionately, as does the LP.  You can poke fun at me in return.  Go on, ask me to say “about” and then snicker at how you think it sounds as though I am talking about a small sea vessel.)

(One of) the Trouble(s) with a Public Health Care System

This morning I got a telephone call from the fabulous and compassionate nurse who assists my general practitioner (GP), a family doctor who has a special interest but no specialization (meaning she didn’t complete specific residencies to become a specialist) in prenatal/conception and pediatric care .  My GP is the Miracle Toddler’s family doctor as well and I really like her, even though sometimes we arm wrestle a little.  I mentioned in a previous post that she gave me a referral to the genetics clinic in the hope that a Geneticist would be able to assist me and the LP in getting some HLA matching in order to assess whether we are losing our babies in part because of DNA matches that might be prompting my immune system to flag all embryos containing the LP’s DNA as pathogens worthy of assault and destruction.

The Geneticist has refused to see me (and the LP) or order any more tests.  Why?  Because he does not believe there is any point.  In his view, I have had all of the testing (meaning the RPL panel and karyotype testing) to which I am entitled under our public health care system (which testing my GP had to fight to have them perform for me, despite being on miscarriage #3 at the time and being of advanced maternal age).  The Geneticist believes that there is no further testing required although if I have another miscarriage my doctor can refer me again for reconsideration.  I’ve had 6 miscarriages since the start of 2013.  Is this guy for real?

This (and super long wait times, like the up to two years I’ll be waiting to see an allergist locally) is one of the reasons I am becoming rather resentful of the public health care system by which I am held hostage in my home and native land.  Bleepity bleep bleep bleep!

That being said, it is also not entirely unexpected.  I was anticipating this in some sense.  At least I had the forethought to set in motion access to private (and much more elaborate, meaning really bloody expensive) testing through Braverman Reproductive Immunology.  The HLA matching tests Dr. Braverman does are far more extensive than anything we would get here.  Public health care be damned, this is what loans and lines of credit are for, right?  I am not happy but at this point it barely registers as a blip on the big picture screen.  It is becoming par for the course, it seems.

On another note, I have been trying for the past two days to get information from the finance folks at Braverman Reproductive Immunology.  I’ve left two telephone messages and sent an e-mail and so far no reply despite the assurance I got yesterday that my first call would be returned today.  This is not sitting well with me given the gobs of cash this doctor charges for even looking in his direction.  Harumph!

 

 

You Win Some, You Lose Some

Today I made an unequivocal move.  I called and made an official, in-person appointment for me and the LP with Dr. Jeffrey Braverman in Long Island for the end of this month.  I booked us flights.  I tried not to gag at how much the initial consult ($900 USD) and the airfare ($1100 USD) will set me back.  The testing is estimated to cost between $900 and $2000 USD, depending on what Dr. Braverman orders.  All of this is out-of-pocket for us.  For me.  I’m paying for it myself.  The LP pays for other stuff.

I then wrote to our current RE to tell him we really like working with him and would prefer to stay with him for our next FET (frozen embryo transfer).  I asked if he would be prepared to coordinate my care with Dr. Braverman should I choose to pursue an immune treatment protocol he might recommend.

The short answer is no, but he was very respectful in his response, which includes the following:

    • “When results don’t match expectations, especially those accompanied by unusual physical elements that appear to be immune in origin, it’s time to think out of the box.”
    • “Our field has very few proven remedies for immune issues as they relate to implantation failure and biochemical losses.”

He went on to say that his own knowledge reflects the current understanding in keeping with the College of which he is a member.  Since many of the interventions offered by “the ‘immune specialists'” are “unproven and in some cases risky”, he prefers only to have a peripheral involvement insofar as he is ultimately responsible for his actions in my care.  He concluded by saying he’d be happy to help me facilitate care with Dr. Braverman if we elect to pursue that.

And that, as they say, is that.   I feel a little like I’ve been fired or given an ultimatum, though I really do get the sense that my RE wants to help and is simply doing what I expected him to do – protect himself first and foremost.  He’s right, he is ultimately responsible for his actions and having acted for docs before in their legal woes, I get that.  I really do.  It still smarts a little to be dumped.

Overall, I feel sad and scared because the stakes and the expense just got bigger.  However, in my gut (where it matters) I know I have done the right thing in seeking some answers.  I need to know why my womb keeps destroying our pregnancies.  Even if the answers lead me back to our current RE and a rejection of whatever Dr. Braverman might recommend (which may be nothing at all though that seems unlikely, it is a big business he runs and all and they all want to make money… and lots of it), I need to ask.  I need some kind of explanation or the ability to make sense of what has happened and what I can expect to have happen in the future if we try again.  Without that I do not know how I could feel comfortable making decisions and moving forward until it is time to quit (either because we succeed or because we don’t and I am at peace with this journey being at an end).

We did not come all this way to throw in the towel or waste the last chances we have.  I have to give this all I’ve got (and what I can reasonably borrow and hope to pay back in the foreseeable future).  It feels like this is the only way I can live with myself in all of this.  I need some peace of mind.  And in the world of recurrent pregnancy loss and immune system overlap, that seems to have a heavy price tag attached to it.  So be it.  I’m in it thigh-deep now, I may as well start wading.

As positive affirmations that something is going right, I have two happy notes on which to end this update.

First, I had a wonderful lunch date with my sister-in-law.  She said I look healthier and better than I have in a really long time and noted that she was really happy about this, because they’d been worried about me.  She’s been with us through the past 18 months and the 6 losses we’ve had in that time and she is the only non-medical person who knows we are using donor eggs.  It meant a lot to me to hear her say I seem calmer, more peaceful and I look healthier.  I needed that today.  More than I could have anticipated.  Thank you, SIL, you made my day.

Second, I won the “pay-day lottery” at my work today.  It was only $95 but hey, that will go toward the dinner to which I’m treating our out-of-town friends tomorrow night while the LP is away.  And it was like God’s way of saying “I’m sorry about the bad news but you’re on the right track here, kiddo.”  Or that’s how I’m looking at it.

 

Hiccup?

As of yesterday, I had sorted out my dilemma of what to do with my spiralling mental health, no doubt a by-product of my spiralled physical health and the 6 miscarriages we’ve undergone since March 2013 in our pursuit of living child number two.  The decision I’d reached was to make no major decisions except to embrace life, try to live in the moment, restore my health (physical, mental and financial) and the proverbial “wait and see.” 

Today, I have had some adventures:

1. I woke up with cause for celebration – I am bleeding heavily.  The old menses has finally arrived, only delayed a few days by the 60 mg of Prednisone I’ve been on for 5 days to combat my immune system flare-up.  I’m relieved, it did not feel good to have a womb full of blood that wanted to escape and was being held captive past its prime.

2. Despite the heavy outpour of blood, I actually feel lighter of spirit (and body, thanks to the blood-letting, no doubt).  I’d swear I were miscarrying, this is super heavy bleeding.  Sorry for the too-much-information confessional.  Most of the day later, I still feel lighter of heart, but for the few forays into unadulterated rage and forehead-smacking (keep reading).  I guess hormones were not helping with the depression that was sinking in a couple of days ago when I penned my last post.

3. I lost my head and launched into a tirade at the LP for neglecting to deal with laundry in any form of civilized fashion.  In my defence, his only responsiblity was to put away what was already washed and folded and to carry to the laundry room the mountain of unmentionables he’s been hoarding (apparently for the past 14 months or so it might appear to the untrained eye)

4. I discovered that letting our two-year old practice “driving” meant my vehicle’s battery was stone-cold dead and required me calling the automobile assocation, which required me to pay over 200 clams for both the LP’s and my annual memberships because someone had neglected to pay that since it was due on March 31, 2014.  No names mentioned (hint: he isn’t two).

5.  I signed up for a new gym membership and I start kicking my own butt tomorrow.  Yay!

6.  I spent some time quietly sipping tea and looking forward to camping with the LP and our Miracle Toddler (also known as Car-Battery-Killer).  I gave or threw away all of my camping supplies when we moved a couple of years ago because the LP “is not the camping type” (read: “wasn’t the camping type” – he has agreed to give this a bona fide effort).  The Car-Battery-Killer and I ahd fun yesterday picking out some new camping equipment  as part of the newly hatched plan to live in the moment, restore mental, physical and other health and forget attempts-at-baby-making-as-lifestyle for the immediately foreseeable future. 

7.  I got a couple of e-mails with advice from our RE.  

*Hiccup!*

So, the RE was thoughtful and careful in his responses.  The key points are below:

A.  The immune flare may be the cause of my TSH more than doubling since a year ago.  It’s always been well under 2, it was 1.55 last June and it was 3.17 this June 24th, 3 weeks after our most recent miscarriage and in the midst of my autoimmune symptom hell that led to the current Prednisone protocol. 

B.  Meds to lower TSH take 3-4 weeks to take effect so the RE recommends I start now.  Okay…

C.  The RE accepts that immune factors appear to be at play for some women (present company included) in assisted reproductive technology (ART), recurrent pregnancy loss and/or infertility (primary or secondary), even though the subject is hotly contested within the ART community and has not been accepted by the American Society of Reproductive Medicine (ASRM).

D.  With the exception of some established autoimmune conditions (none of which I have been diagnosed as having) and their respective protocols, the testing and treatment for suspected immunological factors such as natural killer cells (NKa) and HLA-matching are not recommended by the ASRM and lack convincing, reproducible data.

E.  Typical “immune-modulating” interventions include intra-lipid infusion, IViG and steroids.  Again, the RE maintains, these lack convincing, reproducible results and are not recommended by the ASRM.

F.  Although in his personal opinion, immune factors “probably play a role in some cases”, he acknowledges that “our ability to identify and treat is lacking.”  This will likely change in the coming years, but that does not help me and others like me now or in the immediately foreseeable future.

G.  The RE sees a potential “window of opportunity for embryo transfer” of one or both of our remaining two frozen blastocysts “shortly” after I conclude my current course of Prednisone (I should be done treatment in the third week of July), when hopefully the antibody levels (IgE) have returend to normal.  I asked for clarity on the RE’s definition of “shortly thereafter” but the best I got was a sense of it being in the month or two after I end the steroid treatment (and that’s more my inference than him spelling it out).

H.  The RE is open to using intra-lipids pre- and post-transfer (if successful) and a sub-cutaneous injection of hCG before transfer but NOT further use of steroids during the transfer cycle.

I.  The RE is also not in favour of using an intra-uterine injection of hCG at the time of transfer on the basis that it is primarily aimed at assisting women who fail to develop an adequate uterine lining (which is not my issue, he said) and because he is concerned about placing excess liquid in the endometrium because “it may be a conduit for embryo movement.”  There are some docs who suggest that the intra-uterine injection is also targeted for women with known or suspected immune issues, but I have not raised this and frankly the research on that appears limited and as our RE would say, “lack convincing, reproducible data”.

What does all of this mean for my plan of taking a break from all of this baby-making madness for the rest of summer and maybe longer?  I have no idea.  Do I agree with everything he’s said?  I don’t necessarily disagree, I have some anxieties but I’m letting them go gently right now.  And I plan not to think about the what-ifs beyond having blocked off dates in the LP’s and my respective work calendars in case we decide to take advantage of the “window of opportunity”, should my gut tell me it’s the right thing to do in one of the coming few months.  For me, right now, that is plenty.  I am not committing to any dates right now.

Rather, I plan to press on with the plan to live and rebuild our lives, be in the moment, and go camping (first in the backyard – we need to break in the Miracle Toddler and possibly the LP, after all).  I also plan to call my doctor tomorrow and accept her offer to prescribe me a low dose of thyroid medication to bring my number back under 2.  I can live with that.

It is time to live and to be.  Alive.  Alone.  Together.  Here.  Now.  And whatever else happens?  Well, it will happen as and when it is meant to happen.  This hiccup is not derailing my plan to embrace the life we once had and enjoyed.  I want that back, no matter what else happens.

Giving Serious Thought to Giving Up

I have been dumbstruck by how many symptoms of my immune system collapse to which I had become so accustomed that I no longer considered them indicators of abnormal or unhealthy. Since the first couple of days after I began taking 60 mg of Prednisone to treat my sky-high Immunoglobulin-E levels and relentless allergic reactions to my environment and myself (my own hair was irritating my skin), I have noticed many changes, including:

* my eyes are not sore or burning and they do not weep while I sleep

* the skin around my eyes is not scaling, flaking, red, sore or peeling even when I forget to apply the steroid cream or antibiotic drops I’ve been on since March

* my inner ear channel is not burning and itching

* my throat is not swollen, sore or itching 

* I do not have instant inflammation in my mouth and throat when I eat – even when I eat foods that have some dairy and or gluten in them 

* I can breathe through my nose (even after being around environmental allergens)

* I do not feel foggy from a constant barrage of histamines coursing through my system 

I did not appreciate how sick I was until now.  I rarely get sick usually but I’ve been under this cloud of constant ill-health for months and months. It grew incrementally worse so I didn’t really notice the changes until they combined to create an unliveable situation. However, it took losing our perfect donor-egg embryo in May for me to really question the lie I’d internalized that all of our prior 5 losses since March 2013 were due to my “old eggs” and not an immunological issue or issues.  My heart is very heavy with the knowledge that I ignored my gut for months and basically threw away that perfect embryo before listening to my inner voice reminding me that something deeper is amiss and has been that way for a while. 

There are downsides to the Prednisone. Menstruation, which made every indication it was on its way, has gone AWOL. I feel a new kind of foggy, one riddled with the jitters and a strange fatigue (I imagine this being how I might feel on uppers and downers at the same time). I am retaining fluid and I feel gross about it.  My lower back hurts (I pride myself on not having back pain despite toting a toddler around several hours a day on any given day).  And I am depressed. More than I was before I started this drug.

This is the most worrisome symptom. I need to keep an eye on the depression. I’m not on medication for depression or anxiety anymore (I was – coincidentally the last time I was on them was the first time my immune system went off the rails – a long time ago).  Today I have considered speaking with my doctor about resuming drugs for depression.  I have not made a decision.  

I did talk with the LP about anti-depressants last night and why I’ve tried to avoid them while TTC.  We talked about how down and flat and unable to enjoy life we are and have been over the past 12-18 months. The LP asked what there is to feel good about, noting I am really sick, I’m on harsh drugs to recover from trying to have a child, we have suffered blow after blow, we are in debt and are stressed about that, our work has suffered which causes more financial stress and general worry, we have no explanation as to why I can’t stay pregnant and have gotten so sick.  

The LP is right. Apart from our Miracle Toddler there is nothing about which we feel joyful or glad to be alive.  We are surviving – existing at best – but there is no light at the end of the dark tunnel down which we have been staring and walking for what feels like a long time, though I know for others 18 months would seem like nothing. Six dead babies and the loss of my health are not nothing to me, to us, however.  This feels like a crossroads. 

Last night’s conversation with the LP and a tearful email earlier today to a friend who knows the heartache of losing babies and giving up on TTC led me to wonder if this is the path I should be on anymore.  Maybe be it is time to give up?  At what point does it all become too much?  

As as I wrote to my friend, the more humane and fiscally responsible choice at this point seems obvious. Quitting – giving up on our remaining two DE blastocysts and on any future efforts to try to conceive naturally – seems so much more rational than continuing to smash my face into a wall covered in broken glass. 

One thing I know about grief, depression and mood-altering circumstances generally is that they are not optimal environments in which to make lasting or permanent decisions. So I will not make a final decision today.  But I am giving serious thought to giving up.  At this point it would be irresponsible for me not to do so.   Something has got to give. 

 

The Aggressive Approach

I had a follow-up appointment with my family doctor today.  My other lab results were in. My anti-thyroid antibody levels are normal and the anti-nuclear antibodies test was negative. 

I declined medication to lower my TSH for now and got my doctor’s approval to try to lower that with exercise and acupuncture for now.  I will be ramping up an aggressive exercise routine for this purpose. I wanted to start tonight but it wasn’t meant to be so I will start tomorrow morning and work out hard at least 4-5 times per week. This is based on advice from Dr. Gratitude, who herself had to right some crazy TSH levels at one point. 

I learned at my doctor appointment today that getting in to see an immunologist (allergist specifically) will take one to two years. Yes, I said YEARS.  There is a shortage of them where we live and because they spend considerable time with each patient during the diagnostic phase they see fewer patients than other physicians so the waits are very long.

Allergists are the only folks who can do patch testing, which has the highest accuracy. And since my allergy immunoglobulin levels are very high (940 when the should be under 120), it would be nice to know to what I am allergic so I may avoid or limit exposure if possible.  As a compromise my family doc has ordered RAST food and inhalant panel testing (blood tests) after I undergo an aggressive steroid treatment over the next 21 days – see below. 

I elected the aggressive protocol over two other options that would have had me take over-the-counter antihistamines for a month and if ineffective then steroids or low dose steroids on an ongoing basis, for two months and then a break then another course of two months if necessary or a high dose for a week then tapered off.   The aggressive protocol has me taking 60 mg of Prednisone for 7 days then 3 days each of 50, 40, 30, 20 and 10 for a total period of 21 days. Then we retest my TSH as well as T3, T4 and IgE levels.  Then we wait a month and do the RAST and gluten testing as well as repeating the same thyroid and immunoglobulin levels. 

I am not thrilled to be taking so much Prednisone. But I chose this because I am noticing my body become more and more reactive to all kinds of allergens – my mouth itches and is rough inside almost constantly now even though I’m on an anti-inflammation diet. And I chose it because I hope it will reset my immune system and reduce the high levels of inflammation in my body that I am sure played a role in the most recent pregnancy loss and probably several others. 

And ultimately I chose this aggressive approach because now is as good a time as any to run this experiment and pray for relief and a new start down the road. I have to start somewhere. And it’s go big or go home time. 

Please wish me luck, friends. I may need it. 

 

 

I Told You I Was Not Mad (or making this up)!

That’s what I’d like to tell my doctor.  I saw her yesterday and today I got the first 4 of the 6 lab results she ordered at my request.

My immunoglobulins are going bananas:

  • IGe is 940kU/L (max. normal is 120)  
  • IgG is high normal (13.11g/L, normal range is 6.94-16.18)
  • IgA is also toward the higher range of normal (2.87g/L, normal range is 0.70-4.00)

Also, my TSH is 3.17 (it was 1.55 one year ago after our first two early losses last year).

This is BAD.  I’m upset.  Really upset.  No wonder my body is spitting out or killing slowly every single baby we conceive. 

Now the *F* what?

Seeing my doctor later this week to ask her what she would do normally apart from telling me to take Singulaire, which she prescribed yeterday.  It’s not a steriod and it will not fix these numbers above on its own, even I know that.  But that was her advice fed to me through the nurse today in a note. 

Crap.  Crap crap crap. 

Sorry, that’s all I’ve got here.

Grieving, Testing and Keeping Afloat

The past few weeks – since we found out things did not look promising with our first DE IVF baby in late May – have royally sucked. 

At my appointment with our grief counselor (since pregnancy and loss #1 in 2010/11 – it was how we rang in the new year – ruining that holiday for me forever) yesterday I explained that I am not in crisis (because I know well what that looks and feels like).  But I’m not “me” lately, either.  As my counselor reminded me from the note I sent her, I had “lost my mojo”.

I analogized my sense of who, where and how I am to an inflatable raft (like a dingy but I like the word “raft” better, more Gilligan’s Island-esque) out at sea.  I’m out there, no occupants and no oars.  And the raft is filled with rocks.  There are so many rocks in the raft now that the water is about to breach its outer edge and the whole affair is about to capsize and sink.  It’s as though I can feel a bit of relief when I inhale, which increases my bouyancy, but eventually with each exhale the water comes precariously close to filling the raft and sending us all to the bottom of the sea (we being me and the rocks).  One more rock and… uh oh.  You saw Titanic.  You know how this story ends.

I came to the realization as we spoke yesterday that it’s time to start pitching some of those rocks overboard.  (This should be self-explanatory to all or most of you, but when you’re flat, mojo-less, and lost the obvious can be elusive or just uninteresting, kind of like everything else in life. Hence feeling and being flat.  Mojo-less.)  Great idea!

But how?

Well, I can tell you that the appointment yesterday didn’t leave me with a panacea.  No revelations, either.  It did remind me – our counselor reminded me and I reminded myself – that I have skills, I just need to stay afloat until I can find the energy to start using one or two of them at a time (by “at a time” I mean within the span of the same week, give or take a day or two).  Skills like writing (by hand, in my journal, not blogging – for they are two different forms of healing/expressing/doing/being, at least for me) and making art (which I have not done since May 27, 2014 – the morning of that day specifically, because in the afternoon I got news that shattered my illusion about that pregnancy succeeding) and spending time with our Miracle Toddler. 

The last one is easy – I wish I could do more of that.  The first two are harder, in part because a me without mojo is a perpetually exhausted me who has no drive or desire to do anything beyond what’s absolutely essential to survive and prevent being fired.

All of that to say that at least I have named my place and sense of self in all of this — a lonely, lost-at-sea, rock-filled raft — and I now have a plan for getting out of that place and on with whatever life has to offer.  I don’t know exactly how or when I’ll execute that plan, but as I told our grief counselor, I know one thing from the past 18 months’ descent into hell (or a rock-filled raft lost at sea):  things change.  Not always for the better, not always for the worse, but they always, always change. 

It sounds a bit nihilistic I suppose, but I take some solace in knowing that no matter what, I will not be in this place forever.  I will not be here – wherever here is – forever or even for very long, in all likelihood.  No matter how long it takes me to practice some skills in an effort to leave it or if I never do, I will not be here forever.  Even if I stay in the same geographic place, that place will change.  Because that is how life operates.  To be is to change.  Life is change.  Some good.  Some not so good.  Mostly it just changes, without us really noticing at the time until we open our eyes and find ourselves wondering, as Miracle Toddler would say, “what happened?”

So I know that.  And I also think I know that I am grieving.  I am grieving so many losses, I do not even have words for them all.  Not just our lost babies, but every lost innocence I have suffered on this journey more than four years ago, every hope dashed.  All of it, I am grieving it all.  And so there are no words.  It simply is, as I simply am.  Here, in this place that will not stay the same.  And so it goes.

And now for the “Testing” portion of our program…

I saw my doctor today.  I refused to have her Resident come and speak with me or even sit in on the appointment (I’ve never done this before and it felt really good, I highly recommend it when you’re broaching a painful subject).  The reason for my appointment (they require patients give a reason) was “recurrent pregnancy loss”.  My doc – who has seen me through RPL testing and the pregnancy and birth of our one living child and my recovery from the horrible doctor I fired before her when he heartlessly told me I would in all likelihood miscarry my first pregnancy (which was long fought and hard won – who cares that he proved to be right?) – looked concern as she entered the room and said “Is this happening again?”

She gave me the referral for IVF last Spring and ordered the stat ultrasound when I was sure (and wishing to be wrong) that our baby had died inside of me in September (I was 10 weeks and under her care until a transfer to my OB was scheduled for some 5 or 6 weeks later).  Since then, I have not talked with her about what has happened, though I’ve seen her about other things (including increasingly bad allergic reactions I’ve been having since last summer when I was pregnant with that baby whose heart stopped).  So I told her everything that has happened since September, when I had the D&C.  Three more early losses, including the recent DE IVF chemical pregnancy with a perfect-looking embryo.

I talked to her about the prophylactic-experiment protocol our current RE has proposed; she had raised eyebrows initially when I said this is based on an assumption that some immune system factor is involved though nothing has been diagnosed (surprise, not condemnation) but then she said none of it was troubling to her (steroids, intralipids and even Lovenox, which our RE has actually not proposed and didn’t recommend, though I’m considering asking about it again). To my Dr.’s credit, she (a) admitted she was out of her depth as we discussed immunological testing; and (b) was receptive to trying to come up with some means of being helpful within the confines of what our insurance will cover.

The skinny:

1.  She will set up a referral for me and the LP to see a geneticist – she said this may be a long-shot but it’s the only specialist she knows with authority in our jurisdiction to order the HLA matching tests.  She is hopeful we may be able to get in to see a geneticist by September, but warned that any tests they order could take as long as our karyotype testing took (16 weeks!), so she said we may not want to hold off proceeding to wait for that, although ultimately it was up to us.  I still think it’s worthwhile speaking to someone so I asked her to go ahead with this referral.

2.  She talked about an immunologist but said that they are generally beyond reluctant to dip their toes into infertility or recurrent pregnancy loss waters and believed I would not get much help there apart from perhaps some new allergy patch testing – plus the waiting period is lengthy.  She said rheumatologists would do the testing I’ve already had and in her experience again would be beyond their comfort zone and not likely to go out on a limb where baby-making is involved.

3.  She prescribed Singulaire – again, prophylactically to some extent but also to see if it does reduce the inflammation and allergic reactions I am having, including the allergic conjunctivitis that seems to flare up in my luteal phase of some cycles.

4.  She ordered anti-thyroid antibodies (ATA), thyroid stimulating hormone (TSH), Antinuclear antibodies (ANA)*, and Immunoglobulins (IgG, etc.). 

5.  She cannot requisition sperm DNA integrity testing and wasn’t sure whether the geneticist could do so.

6.  She confirmed my own view of our local RE clinic – mostly useless.

7.  She agreed to write me the letter needed to convince the tax authorities that I didn’t just do IVF last year (or travel to do it) for kicks so I could get some of that money refunded as a tax credit.

About the ANA*, my doc mentioned that a portion of the population test positive for this even when there does not appear to be any actual issue (a false positive, essentially), so she had not included it in my original RPL panel testing in the Spring of 2013.  She decided it was best we test it now just to be inclusive.  I agreed and thanked her for the heads-up about the possible misleading results. 

I had blood drawn today and am now waiting for word on the results.

I feel better.  In part because I got heard (again).  In part because I did not panic and ask for referrals to every specialist and their respective pets.  In part because seeing the grief counselor has helped me feel a little less out-of-control, though the raft is still pretty full of rocks.  And in part because I know we have options I can financially stomach if we decide to do the only outstanding testing I feel kind of strongly about (HLA matching /DQ Alpha)  and the one I wonder about (sperm DNA integrity testing).  

On the latter note, I’ve written e-mail to MI Labs in Chicago again to ask about ordering a kit for the DQ Alpha testing, which will set us back about $500 USD including shipping and handling, and I’m going to ask our RE about possibly doing the sperm DNA integrity testing and how much it would cost if he ordered it (it’s $350 plus the $200 for shipping and handling at MI Labs though if we could do it at the same time as the DQ Alpha shipping maybe we could save on shipping – there’s another question for me to ask my pal Peter at MI Labs!).

So there you have it, my update for the week.  Now I must go, work is on fire and I don’t want to get fired. 

 

 

 

 

Plan B, Version 10.0

When the LP and I first started trying to have a child, I thought I did everything right and though I knew there could be hiccups, I never expected to be hoping for pregnancy number 10 to have 2 living children.  How did this happen?

If you ask Western Medicine, the answer up until the current donor-egg miscarriage has been “old eggs” because:

  • I’m of “advanced maternal age” – meaning over 35;
  • The repeat pregnancy loss (RPL) panel of tests revealed no clotting or immune disorders recognized by Western Medicine as being correlated with recurrent pregnancy loss;
  • The karyotype testing done on me and the LP produced normal results;
  • The worries I had that my immune system is getting progressively more “activated” and “distressed” over the time since we began our most recent run of 6 pregnancy losses since early 2013 were not substantiated and it was not fathomable that I could be reacting to my body’s own hormones.

Yesterday, that changed. 

Yesterday, the LP and I had a very lengthy telephone conference with our current RE.  He reviewed in detail my loss history (again – in case we missed anything before and because my prior clinic’s records were less detailed than one would like in this regard) and then he went over possible reasons why our first donor-egg IVF cycle (a natural frozen-embryo transfer) ended this way.  Then he reviewed the option to do possible further testing (for natural killer or NKa cells and for T-helper cells) and the possible experimental treatment options for diagnosed and sub-clinical immune conditions that could cause a pregnancy loss pattern.  He told us what we already know: 

  • My case is hard to diagnose because I do not have clear markers of a condition Western Medicine currently has a reliable means of testing and accurately diagnosing;
  • My loss history is quite varied, but the more recent losses are similar regardless of whether they involve my own eggs or the egg (we’ve only transferred one) from a young, proven, healthy donor;
  • The chance of this embryo having had chromosomal abnormalities and that being the cause of this loss is only about 25% – 35%, which would be a reasonable explanation (“bad luck”) if I had no prior loss history or if this loss did not suggest a failure late in the implantation and subsequent fetal and placental development process; and
  • Given my loss history, this loss is statistically more likely to point to some underlying, undiagnosed (and possibly not diagnosable) issue.

Finally, in yesterday’s conversation, the RE  said it made sense that I am observing changes in my allergic responses to things during the luteal phase of my cycle, when women’s immune systems are suppressed/altered by the progesterone our bodies produce (or that we’re given in a medicated cycle).  It felt good to be heard.  It felt good to have a Western doctor acknowledge the observation powers and expertise about my body that *I* bring to the table.  Thanks, doc.

We talked about the flaws with the natural killer (NKa) cells testing protocol.  Essentially, the test measures blood levels and function of NKa cells in response to intralipid therapy, not uterine NKa cells and how they might react to such treatment.  Apples and oranges.  Not particularly illuminating, in other words.  I knew that, too, but the LP did not so it was important to review.  I agreed with the RE that undergoing that testing, if we were prepared to adopt a treatment protocol that would incorporate treatment of positive results (i.e., assuming I would test positive), then the NKa testing need not be done.

We also talked about the pros and cons of short-term steroid use to lull a woman’s immune system into accepting implantation and allowing fetal development to proceed when a subclinical or undiagnosed immune response would otherwise prevent that development from continuing.  In short, this is what we are suspecting is at play in my case, though we have no test results to confirm that. 

The RE raised serious concerns about long-term steroid use and risks to the baby even though, as he noted, several of his colleagues in the field or reproductive medicine prescribe long-term steroids before and after embryo transfer and during early pregnancy for women with diagnosed (and undiagnosed, in some cases) immunological conditions.  I had these concerns already myself, knowing first-hand some of the very dangerous side effects long-term steriod use can have (my Mom was in a study about just this after developing premature osteoporosis requiring multiple joint replacements following long-term steroid use). 

The RE also mentioned, however, that he treated a woman with a similar pattern of early pregnancy losses (similar to all 3 of my 2014 losses and 2 of my 3 losses in 2013) using a protocol that included a short course of steroids before/after embryo transfer that was successful and resulted in a live birth (Amen for that Mama!).  I have (mild, controlled) asthma and have had pneumonia more than once, meaning I have personal experience with short-course corticosteroid use and its benefits.  Both of my parents and my one living brother also had/have asthma and I’ve seen both short- and long-term steriod use and the pros and cons of each as I grew up and to this day.  In short, I’m no stranger to the use of corticosteroids, what’s good about it and what is not so great.  As applied to making humans, it makes me nervous if used during the pregnancy’s early development, but not so nervous used during the time at which my uterus seems to be killing our babies.

We also talked about IVIg, with which I’m uncomfortable (and so is the RE) and blood thinners (Lovenox or Clexane if you’re in the UK and low-dose aspirin).  The RE felt that clotting does not appear to be my issue given my gynecological, RPL and one live birth history.  On that basis, he did not recommend using any of those treatments if we decide to go ahead with another transfer using one or both of our two remaining embryos.  I can’t really disagree, plus my Mom had a severe allergy to salicylates so I’ve always stayed away from them on doctor’s advice when I was young, so I figured this was not a bad experimental treatment to reject for now.  If anyone has had a history like mine and success using Lovenox or similar meds, I would truly love to hear from you – please consider emailing me if you’d like a private chat: spirit.baby.please.come.home@gmail.com

The RE was confident that a natural FET is still the right choice for me.  He was happy with my lining, which would have been somewhere between 8 and 9 mm at ovulation (it was 7.6 mm two days before) and insisted that current research shows anything over 6 mm will work and over 7 mm with a trilaminar pattern (mine had that well before ovulation) is sufficient for successful implantation and live birth after heartbeat is detected at 6-8 weeks.  I was a little nervous about this but I’ll be working extra hard on getting my lining in tip-top shape if (when?) we go ahead with another transfer now that I’ve learned things I did not know about how to do that before our last transfer. 

The last topic we discussed was “one or two?”  The RE said his recommendation is always one, but also noted that he would support whatever decision we made and would welcome discussion if we have questions or want more information to help us decide.  We said that although the LP is opposed to twins for a slew of reasons, I am not opposed to having living twins, but I am fearful of complications with a twin pregnancy for me given my history of cholestasis with our own successful pregnancy.  I was told after that pregnancy that my risk of developing cholestasis in future pregnancies was 50-70%.  I also understand that cholestasis is more common in twin pregnancies.  It’s something to think about because the greatest risk of having it is that your baby/ies can die in utero so they deliveries are often scheduled before babies’ due dates (I had an emergency induction at 37 weeks the same day I was diagnosed with cholestasis as my liver enzyme levels were ridiculously high and they were worried about the effect on baby).

The decision about whether to transfer one or two therefore remains unmade.  We will think about it.

We also have to decide whether to proceed with another transfer and if so, when.  I expect that we will do at least one more transfer because I can’t imagine how I would live with myself later if I discarded these two embryos without at least one more whole-hearted attempt.  As for when, we are thinking of cycling in either July or August.

This month will be dedicated to healing and trying to rebuild my hope and some means of having faith that I can actually carry another healthy baby to term (or close enough).  That’s no small order, frankly.  It is hard to wish for a 10th pregnancy when you’re in the process of losing number 9.  I’ve got my work cut out for me. 

Please wish me luck.  Lord knows, I need it.