April 29, 2014

My Advice for the Rookie IVF (DE and Loss Spec)

I've had an interesting thing happen to me on 3 occasions now.  When at the Dr's for a follow up, the Dr at the end of the meeting will say "Now can I speak to you personally about something?"  And then they proceed to inquire all about DE, clinics, legalities, and RE's.  I find it kind of flattering actually.  And I'm always very thankful that I know all that I know and can speak to them in the medical jargon they are used to.  But I find it humorous that I am explaining it to DOCTORS!  LOL!  But I mean if you aren't in that field why would you know all that stuff.  And honestly if you don't have to think about or work for procreation why would you know this!  Anyway...I digress.  
 
I have 2 friends that have fallen into the less than 12% odds (on the good side).  Both pregnant on their first IUI's.  And both of them so oblivious about what they did.  The one called it an IVI!  Lol!  And the other took clomid of all things!   Gasp!  (that just makes a high fsh girl gasp!)  Anyway both if them slightly irritate me.  They are both well educated woman.  Okay... they are a little pretentious. They both think they are smarter than me and act that way quite often.  (I don't correct them on their guffaws, I just smile.)    But what irritates me the most, is the way they discuss their fertility issues.  They down play their luck.  The do not disclose to their parents that they had help. (both over 40, one pregnant with twins).  They perpetuate the myth that it's easy to get pregnant after 40.  I hate that!!!!
 
Anyway...all these recent conversations have led me to this post.  I would like to help future readers / ivf'rs / DE / DS / D Embryo on the things you can do to try to maximize your chances of success.  Please keep in mind these are just my two cents.  These are some of the things I wish we had done before my very first transfer.  And I think if we had we would have found success earlier and without spending as much money as we had.  And it is easy for me to look back and say we should've done this and that, I have no emotions invested at this time.  So here we go.
 
  1. Educate yourself.  If you suffer from PCOS, research the heck out of it.  Nutrition, medications (to ease it, and IF meds), find a great RE with good stats.  If it's high FSH, same thing.  Research the nuts out of it.  Know what you suffer from inside and out, that way when you talk to your RE, they will respect you and speak to you honestly about your situation.  And it helps you understand what your realistic chances are.  It also helps to weed out those in the profession that do not know enough about POF/DOR so you may avoid them.
  2. Be your own advocate.   Question your RE about their decisions.  Ask questions, ask questions, ask questions.  Be invested in this journey.  Remember this is a business.  Fertility clinics make money, a lot of money.  They are not Drs solely for altruistic reasons.  Ask for testing, before failures start to pile up.  IVF is $14,000 gamble (Canada).  DE IVF is a $20 - $30, 000 gamble.  Do NOT be fooled, there is no golden ticket, the stats are never in your favour, and the Dr's see 1000's of patients, they are not emotionally invested in this working, YOU ARE!   Demand testing (loss panel) , demand mock cycles (FET's),   if you think something is off or you want extra testing ask for it.
  3. Get Immune Testing.  Run your thyroid.  Run cortisol levels.  Look for clotting issues.  Do karyotyping.  Get an endometrial scratch test done the month before.  None of this hurts your chances of success.  It might delay you a month or two but a miscarriage can sideline you much longer, and the emotional fall out from BFN's and m/c's are horrible. 
  4. Spend the Money.  Even if your insurance won't pay for all the testing, and some of it is expensive, do the testing.  It could and would be a lot cheaper than doing multiple cycles to only find things out after every failure.  Find everything before the cycle.  Throw the kitchen sink at it right away. 
  5. Be Realistic.  Understand the statistics.  They are not great.  Do not be naive and think there is no way we are going to fall onto the bad side of the stats.  Too late you already have.  You are 1 in 8 couples that are facing infertility.  You may be the 37% that fail your first IVF.  But it doesn't mean you can't be hopeful.  Just be realistic.  Don't go into your u/s praying for 20 follies if you have POF, be happy and excited for 3!  (this falls back to educating yourself, know what to expect with your diagnosis.)
  6. Find a Healthy Outlet.  The stress of infertility is huge.  You have to find a healthy outlet to release the anxiety, anger, and frustration.  Whether this is talking to someone (a professional) or swimming, running, music, poetry, etc...  Find some outlet so that you can shut yourself off for a little bit.  Do not think of acupuncture as your outlet.  Lol!  Do something that is good for your spirit. 
*The stats I used are the averages that I have seen and heard over my years of dealing with IF.  And I haven't had to focus on clinic stats in 2 years now, so they may be a little better, but from what I'm seeing with my IF friends, not so much!*  But again don't take my word on it.  Who am I?  A stay at home mom.   Research for yourself, find the clinic with good stats, with an RE for your diagnosis. *
 
And by no means do I mean you have to be an open book with every Tom, Dick and Henry about what you are going through.  It's your story to share with who and when and if you choose.  I just have approached our situation very differently.  (whole post coming on telling vs. not telling) 
 
Anyway, I thought I would do a little list of things I wish I had taken into consideration prior to our cycles.  If I had done some things differently maybe it wouldn't have taken us 7 years.   Maybe it would have been 2.  Who's to know.  But then I might not have these 2 very special little souls that I have today.  And they are worth every minute.  Plus I value all I learned.  It helps me educate others.  And if I help one person with my experience, that IF had meaning in my life.
 
God Bless!
Much Love!
 
ks

2 comments:

Michelle D said...

Love this post. So many great advice and ones I would give or given myself at time of diagnosis. It boggles my mind that people get diagnosed with anything and don't research the crap out of it or get super proactive (okay so I'm not great at taking my calcium/vitamin D that I should be but I'm proactive elsewhere). That is awesome that your doctor asks you for information. Impressive :)

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