Another Day. Another Lab Mixup

It seems as if I am on a hamster wheel with these blood tests.  My blood was drawn but no one at the lab informed me that there was a consent form that I needed to complete before they could pass along the tests to my Doctor.

The Beer Center emailed me the form that was then faxed to the lab twice.  More delays.  More drama.  More phone calls.  More trust issues.

The phone calls DID reveal that my results will take about two weeks before they are in the hands of the Doctor.  That means it will be at least two more weeks until my consultation with The Beer Center.  Two long weeks!  I am starting to get a little anxious to hear our fate.  I am starting to get a little antsy about how long we have been sidelined by all of this testing.  I started down this Reproductive Immunology path in October, in earnest.  It will be February before we have our results. 

The problem with this is that I expected to have the consult in early January.  Admittedly, this is not the fault of the Beer Center.  They have been great.  They are responsive, helpful and speedy.  This is MY fault and the fault of the labs.  This is why I have trust issues.  This is why I follow up and annoy people.  It is situations like this that remind me that I need to hand hold.  Just when I think people have it under control and I become lax in the hand holding they prove it necessary.  Ugh.

Hopefully, when we finally have our consult we will learn something new - Something we didn't already know.  Something treatable.  Something tangible.  Something better than 'I don't know.'

Here's to hoping for something to be wrong rather than nothing, as usual.

Awaiting Test Results = Agony

I am awaiting test results for my Reproductive Immunology work up.  Funny enough, though, the tests I am waiting for before I can schedule my consult are standard panels done by my local lab performed (and faxed to the The Beer Center).  Shocking, right?  (Extreme Sarcasm)  Admittedly, my lab requisition was enormous BUT they skipped a test without informing me and performed/coded two of the tests incorrectly.  (Sigh) 

More blood work.

More out-of-pocket expenses for other peoples' mistakes.  (Sheesh)

I had my standard panel done at my local lab on December 15.  (I've had many of these tests done already but just not within the last year.)  These fasting tests included:

• Glucose
• Prolactin
• ANA reflex titer with positive
• TSH
• FSH (CD 3)
• CBC with Platelets
• Fasting Total Insulin
• Anti-TPO (Peroxidase)
• Anti-Thyroglobulin
• Free T4
• PTT
• PAI-1 4G/5G gene mutation
• PAI-1 Activator Inhibitor Activity
• Antithrombin III Activity
• Comprehensive Metabolic Panel
• Prothrombin Gene Mutation (Factor II)
• MTHFR C677T and A1298C (mutation)
• Serum Immunoglobulins (IgG, IgM, IgA)
• Leiden Fact V gene mutation
• Homocystine
• Ovarian Antibodies IgG
• HBsAg
• ABO, RH (blood type)
• Serotonin (serum)
• Protein C, Activity/Functional 
• Protein S, Activity/Functional
• Vitamin D 25 Hydroxy

On December 16 I had my Reproductive Immunology Panel drawn and overnighted to the Beer Center's Lab.  The tests, for myself and my husband, included:

• NK Assay Full Panel
• TH1:TH2 Cytokine Panel
• Leukocyte Antibody Detection Panel
• Human T-reg
• Factor Xiii Gene Polymorphism
• Antiphopholipid Panel
• Anti-DNA/Histone Panel

I am anxiously awaiting the consultant to discuss the results.  Heck, I am anxious to know when the consult will be. 

Yesterday, I was filled with anxiety and fear when I found out the news about the missing tests.  I was frustrated both at the lab and at myself for giving my lab the benefit of the doubt and not checking to be sure that the blood tests had been faxed to The Beer Center as they assured me they would.  The results weren't faxed.  When will I learn?  I'm the one that is impacted by their mistakes and their ambivalence.  (ugh)

Today I feel better, however.

I feel better today because my repeat blood work is complete and I will be able to schedule my consult tomorrow (I think).  I feel better because the representative at the Beer Center was wonderful.  She called me back right away, before I headed to the alternate lab, to tell me to add the missing/incorrectly performed tests to my requisition for the skipped test.  How wonderful is that?  I emailed her and she called me within 10 minutes in order to help me avoid multiple needle jabs this week and multiple trips to the alternate lab.  She was so nice and helpful and it is a breath of fresh air. 

For the first time I feel like I am being seen by a Center that "knows what to do with me."  Do you know what I mean?  At my various RE offices throughout the years I have always felt like they were always puzzled by me/my medical situation and didn't know what to do with me even though they always had the best intentions and sincerest interest in helping me bring home a baby.   

Today was a good day... Hopefully 2015 will be filled with more days like today.  Every year I say it and every year I believe it to be true but "2015 will be my year"

Hoping For Something To Be Wrong

Hoping for something to be wrong is quite an unusual feeling.  It is something that perhaps only someone battling infertility might share similar feelings.

What's wrong?  It is something I have been trying to figure out for 3.5 years.  First I thought it was my thyroid, then I thought it was my eggs, then I thought it may by my husband's sample.  Now it's immunology.

Why immunology?  Well, even IVF didn't work and now I cannot even get pregnant.  It's a strange, strange destination to find ourselves in.  3.5 years ago we thought that we just needed to get one to stick and now I'm even wondering if it's possible for one to actually stick.  They call that implantation failure.  Immunology factors can contribute to implantation failure.

I WON'T sit here and pretend that I don't think that this IS the problem just as I have done with the subclinical hypothyroid diagnosis.  I WILL sit here and admit that while I do understand Reproductive Immunology I do not have the level of understanding to describe it in this blog post.  It is a complicated affair.  I bought a book and read the introduction and first few chapters but have determined that I will not be reading anything further until/if it is necessary.  This may help provide me with clarity as I potentially move forward in a whole new world of requirements, restrictions and medications.

A few things are certain.  I will sleep better knowing our results.  I will feel either vindicated in finding an answer or continue to seek out the root cause of our problems.  Regardless of the outcome, I will proceed into this next round of IVF with much more confidence than I had in October.

A weight has been lifted and I am grateful for the opportunity to seek out this additional testing even if it has been of great expense.  Peace of mind is priceless.

Immunology Testing Complete (awaiting results)

What a whirlwind this last 6 weeks have been.  I picked a Reproductive Immunologist (Alan E. Beer Center for Reproductive Immunology & Genetics).  I had an endometrial biopsy last week.  I've also had 22 tubes of blood taken and sent to the immunology lab along with my husbands blood.  I hosted a baby shower at my house.  I've started a new job. I hosted Thanksgiving Dinner.  I've finished my Christmas shopping.  I've watched my very pregnant new co-worker mosey around the office.  I've learned that my other coworkers wife is also pregnant.  

Now I wait. 

I wait 3 weeks or so until the tests are in and the doctor reviews them. I will have a phone consultation to talk about any findings/recommendations and we will go from there.

Now I wait.  I am not good at this part.

Have I ever mentioned my husbands refuctance to all things medical and especially needles?  It has made the last 3.5 years challenging.  However, I must say that he handled his bloodwork like a champ this time around.  I am quite proud.  He was adorned with a nice bracelet while at the lab.  Neon orange is not his color but it did the job and he avoided any falling injuries.

Rainbow:       The tests are behind us.  What a relief!

Rainshower:   We have to wait.

I did it – I requested Immunology Testing

I sent an email to my Reproductive Endocrinologist, via my patient web portal, almost two weeks ago.  She hadn’t replied after a week so I forwarded her the message and reiterated my thoughts in a respectful manner.  She still hasn’t bothered to reply.  I am not surprised.  I didn’t expect her to be receptive to the idea but I certainly didn’t expect her to simply ignore me.  This has me peeved.

Here is a slightly edited version of the original message I sent to my RE:

Hello Dr. ______,
I had a couple of questions for you that I have not asked in the past and wanted to write to you about them.

The endometrial biopsy… What are you looking for? Which tests are you running on the lining? I suppose that I am curious specifically about whether or not Natural Killer cells will be tested.  Immunology is something that I have been meaning to ask you about but it hasn’t come up because I know that many REs are divided about it.

 I am also interested in the HLA DQ alpha genotype testing on (Husband) and myself. From what I understand this can have an impact on early pregnancy and my immune response.

 Lastly, have we had the Sperm Chromatin Structure Assay (SCSA) or Sperm DNA Integrity Assay (SDIA) tests performed on (Husband’s) sample?

In the mean time there have been some updates to share.

My State of Mind up to now?

I have been stressed and often distracted by all of this.  Since returning from my funeral trip I am having a hard time with things.  After the biopsy and the lack of response from my doctor I have really started to feel reservations about moving ahead with another IVF cycle.  In fact, we have already made that decision.  I feel it is important to follow my gut and get this testing before moving forward with any additional treatment.  I have been losing sleep over this.  Ordinarily nothing affects my sleep so this is a big deal.  The last time I was losing sleep over fertility issues I ended up switching RE’s.  I am getting the feeling that it is that time again.

Endometrial Biopsy

My endometrial biopsy went well.  The procedure itself was a piece of cake for me but I know that for most people there is some cramping and discomfort.  The results came back yesterday - “Fine.”  The nurse left me the message.  Considering that I didn’t even know what exactly they were looking for it is hard for me to interpret “fine”.  (I am not trying to pick on the nurse but I am frustrated by the lack of response from my Doctor).  Also of note is the my “lab results” section of my web portal shows no test results for the biopsy so I cannot put two and two together to know what “fine” means.

Reproductive Immunology

I reached out to a Doctor in Las Vegas (and now two Doctors but considering a third as well) that are true believers in Reproductive Immunology.  I scheduled a skype consultation with one Doctor but it will not take place until FEBRUARY.  That’s four months away - a heck of a long time to wait just for testing. 

Due to this long wait I reached out to another RI in NYC and am in the process of scheduling a brief phone consult with him too.  A forum has led to me a third Doctor in California that I am now favoring due to the possibility of having a local RE work with them (something that the first two Doctors either do not do or REs will not agree to work with them).   

Out of State IVF?

Depending on the results of the Immune testing I may consider traveling out of state to one of these Doctor’s clinics for IVF.  First, though, I need to do more research in trying to find a Doctor, either an RE, OB or PCP, in my state that believes in this controversial subject in the event that an RI might agree to work with a local RE.  I reached out to one of the only clinics near me that I have not worked with yet and they have referred me out of state.  

Getting Ahead of Myself

I realize that in many ways I am getting ahead of myself here.  I know that I have not been diagnosed with an Immune issue.   My husband hates that I am already acting as if we do have this issue but here is the thing… I need to feel like I am doing something to help us.  I need to keep busy so that I will not focus so much on the delay that this is causing.  I need to know that if we do end up having an immune issue that we are better prepared to move forward and move forward informed, with confidence and swiftly.  That is my goal – keep moving forward and keep fighting for us.

I need to be my own advocate. 

No one cares more than me so I need to keep pursuing the hunches and what I feel strongly about.  No one has all of the answers.  No one has a crystal ball.

Next Steps

• Skype conversation with Reproductive Immunologists
• Blood tests for my husband and me
• Breathe
• Sleep better at night

Where have I been? Busy.

So let's see.  It has been awhile.  I had my IVF followup.  My embryos were "good". That's not the issue according to the doctor.  It should have worked.  The team of doctors that review failed cycles wants me to have some additional tests.  Another office hysteroscopy and an endometrial biopsy.  The office hysteroscopy is complete (all good) and the endometrial biopsy is schedule for Friday, October 10.  We also have a new IVF protocol... Not sure the details but they will have me on Menopur this time if that tells you anything.

Life stuff: I have been insanely busy with work this summer and not loving a minute of it.  I am in the midst of a mini family feud.   I was approached about taking a new job... Heavily pursued really.  I was extremely flattered but in the end I turned it down.  That whole thing was insanely stressful and emotional since I have been thinking about life without kids and trying to resolve some feelings of sadness about the possibility.  Now I am interviewing for a new job more in line with where I see myself without children.  It has been a BUSY couple of months.  

My husbands' grandmother also passed away requiring an out of state trip that really reminded me (read: 'smacked me in the face') of how stuck in limbo we are.  I was visiting these very family members in the midst of my first miscarriage and here I was back after more than three years with no baby, and no pregnancy, seeing these people who have obviously been busy making babies in my absence.  It was tough.  Tough also because in that part of the country it is normal to start families early and it was baby central for four whole days.  Not pleasant, not at all.  Then these thoughts begin:  Part of me kicks myself for being responsible and waiting to begin a family until we were married and financially secure.  Would all of this have been avoided if I had younger eggs?  

I have been thinking about my life without children and think I have a better vision of what I would like that to look like... If that is the hand I am dealt.  When I first started this blog I was much more optimistic about things working out as I had planned.  I thought that I would have already had a child and may even be pregnant with my second by now.  Now I am unsure if we will even have a baby.  What a difference a few years can make for your hopes and dreams.  

I am also randomly but regularly plagued with thoughts about reproductive immunology.  I keep wondering about my immune system and if it may be the silent cause of my grief.  I meant to bring it up at our IVF followup appointment but was thrown for a loop when all of these new/repeat tests were suggested. I was especially happy that they wanted to do the endometrial biopsy.  Once upon a time I suspected that I had a luteal phase defect.  Perhaps this biopsy will help clarify this old hunch.  I have moved on from that though.  My latest hunch is related to my immune system.  Unfortunately, I have kept backing off about asking my RE's about her stance on the immunology topic and ask for testing.  In fact, as I sit here typing this I am supposed to be sending a message to my RE to request the testing.  I WILL do it.  I promise.  Tomorrow.

I suppose this blog post is helping me put things into perspective, help me be brave about asking and to help me wrap my head around what is truly important to me.  If immunology testing is bugging me this much I need to follow my gut.  She will say there is no research - that there are no studies.  She is right, but this sort of thing is incredibly hard to study and prove... So much of the reproductive field is still such a mystery.  They do not know why some medications work the way they do and many of the medications themselves are meant to treat other illnesses whose side effects happen to work favorably for ovaries, etc.  See where I am going with this? The science is great but the also science has gaping holes... Why not just test me so I can cross it off the list?  There is no harm in that.

So what are these tests I keep eluding to?  Natural killer cells and HLA DQ Alpha Matching (if you don't know about it, Google it, there is no way I am going to try to explain it here).  There I said it.  I keep coming back to this and keep thinking that my own body is working against me.  I need to be able to move on from that feeling before beginning the next round of IVF.  I need to have a little reassurance.  It is all about feeling comfortable and confident moving forward.  Testing will bring me that comfort and confidence so bring on the needles please.

So Many Unresolved Questions

Having undergone the physically grueling and emotionally exhausting process that is IVF has caused me to doubt my future.  Will IVF ever work?  If IVF works will I miscarry again?  After all, these eggs of mine are three years older than they were when we first began all of this.  Will these supplements really help my egg quality?

What would my life be like without children?
Will I be okay with not having any children?
What will my relationship look like without children?  What about my daily life - what will that look like?

Such big questions.  No real answers.

Unfortunately, my life has been on hold for over 3 years.  It is sad to say but true.  I live by the TTC calendar.  I sacrifice my money, my vacation days, my sanity, my career, my job prospects and much more to ride on this hamster wheel.  I am beginning to feel like the end is near.  I have a feeling that I won't be able to sustain this quest for many more years.  I don't think I am up to it.  I probably have one more year of fight left in me.  12 or so months.

I know that I owe it to myself to keep trying until I feel like I am defeated, or at peace with the circumstance.  I am not defeated yet.  Just because I am tired of the hamster wheel doesn't make me defeated.  I know that I do not want to look back with regret about what I wished I would have done.  I know that I am an amazingly strong person that is handling all of this quite well considering.  After all, how many childless women out there have the misfortune to battle recurrent miscarriage AND now infertility?  That must be a small percent.  The recurrent miscarriage percent alone is around 2% so how many people in that 2% then need to deal with infertility on top of it?  Geesh.  That is one BAD lottery.

This is exactly why we won't be starting another round of IVF until October - November.  I need a break.  I need to recharge.  Recuperate.  Re-energize.  I need to reconnect with my husband.  

We have a follow up appointment with our RE, but not until September 11, a full month after our beta test.  I am a little frustrated by that but at the same time know that it is fine to have to wait so long since we won't be jumping right into another IVF cycle.  I have been compiling my questions for the appointment.  I am curious what she will say about our two day 5 blasts.  She was always so hesitant to talk about the grades which I always thought was a sign that they weren't the greatest quality.  The positive point to that is that it helped set my expectations appropriately.

One thing is certain.  If I am able to get pregnant again I KNOW that IF I miscarry again I WILL fall into another depression.  Probably worse than my depression after my second miscarriage - the miscarriage that pulled the rug out from under me.  This current hypothetical pregnancy has been in the making for over two years.  It will have been in the making for 2.5 years by the time we try IVF again.  That is a long time to not be pregnant and not have a miscarriage.

One thing I know though...  I am a Rockstar of IVF.  The meds don't phase me.  The needles are just fine.  The constant internal ultrasounds - whatever.  The side effects are all minimal.  The mood swings are non-existent.  I can and will do it again.  I can only hope for better results in the future.