Tuesday, October 21, 2014

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

Tuesday, October 7, 2014

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.