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

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