Dear Newly Diagnosed Self,

There's another little post floating around Facebook that I keep seeing.  It's a post about a childless pregnant person, and what she would tell her pregnant self in hindsight after the baby was born.

It got me thinking.  What would my 5 year veteran IF self tell my newly diagnosed self?  I wouldn't want to scare her with the gory details, but I would want to share a few things. 

Dear Newly Diagnosed Self, 

You won't know how long you'll be at this for, and this will be very hard for you to accept.  I want you to know a few important things about this journey.  

1. This isn't your fault.  

2. You will need to learn how to be extra kind and forgiving to yourself if you can.  You will fall down in this journey.  You are stronger than you know and you will get back up.   

3.  Nurses and receptionists are tremendously important gate keepers of information.  Don't be afraid to communicate with them.  You need them on your team.  Show them some love.  

4.  Connecting online is a wonderful thing.  It's freeing and informative.  When dealing about important stuff, try to find a reliable research based source for your information.  If you can, read a few journal articles.  Even just reading the summaries is better than nothing. 

5.  Don't be scared to share about your IF with your closest friends and family.  While they all won't be supportive in the way that you hope, some of them will.   If you can, tell them what you need.  Because they have no idea.  This is new territory for most of them too. 

6. Get organized.  Keep a copy of your medical file.  Request copies from your practitioner, even if it costs money.  What you learn from reading those reports will be invaluable.  

7.  Don't settle on a doctor because of geography.   Interview doctorS prior to trusting them with your care.  

8.  Research and ask questions.  Make notes of those questions before your appointments.   Why? is a great question to ask your doctor. 

9.  Bring your cell phone to doctor's appointments.  With discretion, record your conversations with your doctors so you can listen to them again at home.  This will reduce your anxiety during the appointment (for fearing that you will forget something they said).  It will allow you to be in the moment and ask better questions.   

10.  Listen to that little voice inside of you.  She knows a thing or two about you. 

11.  Nurture relationships with other IFers, online and in real life.   The people you will meet are the real deal.  Their stories will inspire you and break your heart. 

12.  Be flexible. You might need a plan E, F and G.  Remember your goal is to be a parent.   Don't beat yourself up when you change plans and directions.  Change is a big part of progress. 

13.  Try to be kind and forgiving of your fertile friends.  Think back to what you might be like if you weren't an IFer.   Educate them if you can. 

14. This doesn't mean you should let your fertile friends walk all over you.  Self protection is real and important.  

15. There is a spiritual side of this.  It's confusing as hell. 

16.  This journey will change you, D, and your relationship.   Remember that blessings can come from bad situations. 

17. Therapy is a wonderful luxury.  Use it. 

18.  Remember that there are things you like about being child free and savour them.  Sleeping in on weekends is amazing.    One day you will miss those things. 

What would you tell your newly diagnosed self?

The Journey, So Far...

I typed out a nice neat little index page with page numbers for Dr. Schoolie when I submitted all 250 pages of our medical reports.

Going through the process of organizing my records was a tedious and emotionally exhausting task.  Each portion brought up memories of how we felt at each turn.  It also made me feel frustrated that there wasn't a more efficient way to navigate through the difficult waters of IF.

May 2008	Semen analysis:  1.6 million
	Normal pelvic ultrasound
	Hormone levels tested but not on cycle day 3.
June 2008	Semen analysis: 1.6 million
Aug. 2008	D has bilateral testicular biopsy under the direction of urologist.  Findings: bilateral hydrocele and meiotic arrest.
	D has infection after this procedure, and is treated twice with antibiotics (for two weeks each time). Up until 1.5 years after this procedure, D has infrequent “stabbing” pains in his testes.
Oct. 2008	Dr. Nada, Enocrinology consult, no findings referred to another endocrinologist.
Nov. 2008	Scrotal ultrasound: focal hypoechoic regions within the superomedial aspect of both testes measuring 1.2 and 1.4 cm.  Likely related to previous biopsies.  Bilateral small varicoceles are demonstrated.  Small right hydrocele.  3mm cyst on left epididymal head.
Dec. 2008	D- Endocrinology consult with second endocrinologist found no abnormal results. CBC normal.
Jan. 2009	New clinic #2 Semen analysis. 0.6x10 6/ml
Feb. 2009	Semen analysis (washed), total motile count 4 million.
	Day 3 FSH: 23.8 IU/L Day 21 Progesterone: 48nmol/L
	Genetic screening and other blood work (day 21 and other).
	2nd opinion with Urologist.  His opinion was that the testicular biopsy was unnecessary, and that the results showed only a focal diagnosis.   No further recommendations.
Mar. 2009	Hysterosalpingogram: Right fallopian tube patent, left tube irregular, curved, tortuous and dilated, left tube appears blocked.  Antiverted, anteflexed uterus. Right ovary 2.5cm x 1.3cm, left 2cm x 1cm. Small irregularities in uterine lining.
	Diagnosis: Premature ovarian failure, advised to consider donor programs.
April 2009	New Clinic: #3 Dr. Snowflake
June 2009	IVF cycle suggested to be changed to IUI.  Cycle cancelled: My sister had a massive stroke at age 28 (from an undetermined cause).
Sept. 2009	Day 3 FSH: 6.5 IU/L
	Operative Hysteroscopy to remove small amount of scar tissue near embryo transfer site.  Pathology Report: Endometrial curettings (1.0ml of hemorrahigic tissue and mucoid material): proliferative endometrium.
May 2010	Sonohystogram, results normal. (Dr. Snowflake).
Nov. 2010	FET #1: Transferred 1 donor embryo (from couple #1), rated “cleaved 4-6 cell”. HCG <1.0
Feb. 2011	Adopted 6 blasts via Snowflakes Created in 2005
April 2011	New clinic: USA, Dr. M Frankenstein
	Semen analysis: Grade A, low count, borderline morphology.  Semen frozen (unused as of Oct/12).
	Monitored for one natural cycle: Doctor says follicles didn’t mature as expected. Decided to proceed with adopted embryos.
	Day 2 FSH:  19.6 mlU/ml Follicle count: 7?
July 2011	FET #2: Donor embryos, 2 unrated blasts.  Embryologist says they are unrated because they were still collapsed 2-3 hours after they were thawed. HCG <1.0
Sept. 2011	FET #3:  Donor embryos, 2 blasts 6BA & 5BB  HCG <1.0
Nov. 2011	FET #4: Donor embryos, 2 blasts 4AA & 4BA, HCG = 75, (6 days after transfer), 1547 (13 days after transfer).
Dec. 2011	Miscarriage confirmed at 8 weeks
Jan. 2012	D&C after incomplete natural miscarriage
	Started 75mg DHEA/day
Mar. 2012	AMH tested: 0.42ng/ml
	Day 3 FSH 17.5 mlU/ml
April 2012	IVF with ICSI (own eggs) Medication: · 40 units of Leuprolide on cycle days 3 and 4. 300 units of Gonal-f for 16 days, the last 8 days of stimulation 150 units of Menopur. · See cycle sheet for other meds. · 500mg Flagyl & Doxycycline for both of us in case of subclinical infection (2 weeks).  Started one week approximately before transfer. Retrieved 9 mature eggs + 2 immature eggs, 7 fertilized, 6 survived. Ratings on day 5: 1.     EBL: C1 2.     BL: B1 3.     EBL: A 4.     Mor: B1 5.     Mor: A 6.     Mor: “?” 7.     Mor: A
	Semen analysis for ICSI
	2 transferred, 1 blast 4AA and 1 early blast (unrated) HCG = 38.4 (10 days after transfer). Bright red spotting 14 days after transfer (HCG =278), miscarriage 22 days after transfer.
	Tested natural killer (normal), DQ Alpha (normal) and MTHFR (positive for heterozygous copy of A1298C mutation).
May 2012	Day 3 FSH 11.1
June 2012	Semi-natural FET cycle attempted. Ovulated on day 11, doctor not expecting this early, cycle canceled.
July 2012	FET #5: own embryos, 2 transferred, 2x day 5 morulas, A & B1. Started new protocol of 81mg ASA, 10mg prednisone, 40mg Lovenox at time of transfer.  500mg Flagyl & Doxycycline for both of us in case of subclinical infection (2 weeks). HCG 1.8, then declined.
Sept. 2012	FET # 6: own embryos, 2 transferred, early blast with “?” rating and blast rated 3AB. Changed protocol (81mg ASA, 10mg Prednisone, 40mg Lovenox) starting one week before transfer. HCG <1.0
Nov. 2012	Consult with Dr. Schoolie.

Letting it all hang out

I’ve been thinking of starting a blog for a couple of years.  However, doubts filled my mind:

Would it be helpful for me or anyone else?

Would it be interesting enough or be too negative? 

What if someone I know stumbled across my little corner of the internet, where I post my deepest fears and my uncensored ramblings about my life?

What do have to say that hasn’t already been said already?

I still have all of these doubts.  However, what changed is that I’m feeling like I could use a little (ok, a lot!) more sanity in my life. And I think writing will help me get closer to that.  I need this little space more than ever.

So, here I go.   I’m doing this for me, in spite of all my doubts. 

I’m not sure where to start? So much has happened in the past five years since we started trying to conceive.  For now, I think I’ll just start with yesterday.

Yesterday I finished putting together our medical records for our telephone consultation with CCRM.   I called the nurse at CCRM to see if they would like the information in any particular order?  She said no, that they would be organizing it themselves anyways.

Because we’ve been the patients of three other clinics now, not including the many specialists that my hubby has seen over the years, things have gotten really complicated.  Complicated as in adopting 8 donor embryos from two different couples, back to IVF with our own gametes, a couple of miscarriages and a clotting disorder.  I wanted to give the doctor and nurses the clearest snapshot of where we’ve been so they can give us the best advice on how to move forward.   Right now we’re all in.  I think this will be it for us.  CCRM represents our last ditch effort to become parents through fertility treatments.  They are the big guns, and we’re bringing them out.

After getting copies of all of our records, I consolidated them into a binder.  I made a summary page highlighting the information that I thought was especially important, and referenced the page number that it could be found on.   All in all, there were 236 pages of medical information about us.    It was an exhausting process to put it all together in some logical order. 

Seeing all of the information in black and white, in a 3” blue binder brought forward a lot of feelings.  It clarified a lot of things for me (more to come at another time on this).  It also created a lot of questions, and allowed me to see where things could have been done differently.   It gave me hope that maybe, just maybe, this new clinic might be able to see something different, or be able to help us get closer to our dream of becoming parents. 

Some of the pages made my eyes well up with tears.  Others made me feel full fledged burning anger.    All 236 pages left me in disbelief that this is our life, and that 5 years later, we are still searching for our way out of this IF hell hole.

Some of the pages that were the hardest to read:

·      The very first semen analysis (S/A) that DH did.  Not anticipating (as in, it never even crossed my mind that we could have bad news), I went to my OBGYN alone.  A few minutes later, I was sitting in my car with a piece of paper, a bunch of numbers I didn’t understand with the word “STERILE” written on it in.  Seeing that piece of paper reminds me of bawling hysterically in my car wondering how I was ever going to give D the news. 

·      The copy of the first ever FSH hormone test that I had.  It left me feeling confident in my reproductive abilities.  Ha!  One year later, I learned that my ovaries looked like they were 45 years old instead of the 28 years old that I was at the time.

·      The ultrasound pictures of the twins that we lost earlier this year at 8 weeks, and the blood test confirming another pregnancy loss at 5 weeks.

I want to find away out of this IF land.   That’s what this is all about.