Monday, May 2, 2016

Help me find some patience

It's been a long time coming, and I am strangely at peace with where we are right now. Actually, thats a lie...this whole business SUCKS.  Every new pregnancy announcement is very close to setting off a whole fireworks of emotion from me.  It makes me incredibly angry that some people have it so damn easy.  Tomorrow is just one example of our long fertility journey.  It will hopefully be the last of the days of fertility testing before we learn what our treatment plan will be.  Two of the things our fertility specialist wanted was for us to do was meet with a genetic counselor and for me to meet with a high risk OB. Then last month when I had my period I was in extreme pain, taking motrin every 4-6 hours around the clock and still miserable in between.  It was found that I have a very large cyst on my left ovary. So I have a check up on that tomorrow too, another ultrasound and an MRI.  We will literally be at the hospital from 10 am to probably 4 pm.

The genetic counselor will probably just go over our (you guessed it...) genetics.  Since we have sent them all the paperwork with my husbands info, I am hopeful they won't send us for more testing, which could delay our treatments even more.  That reminds, I should probably bring a copy of all of the genetic info from him as well as the CF stuff.  Hopefully we still have his Ambry results somewhere.  Ugh, I can't find it now and I have NO idea where it would be.  Or even who to call to get copies.  We had that done at a different hospital about 3 years ago. Ambry is a company that tests for CF.  They were able to look at my husbands blood tests and tell us that they are fairly certain he is not a carrier of the 1,000 possible mutations.  But my guess is they want to talk more about his genetics, which we do have a copy of.  Phew.  That's the reason we are getting the PGD, not for the CF.

Then I have a pre-conception visit with the high risk OB.  Almost all CF patients have to be seen by a high risk doctor because of potential complications that could arise during the pregnancy or delivery. I don't think this appointment will tell me much.  I've met with her before, but the fertility specialist requested me to do it again.  And since I'll be there anyway, I may as well get it over with.  She'll probably just go over my medication list and give me some advice as to what I can be on while pregnant.  I know for a fact that they will be more pro-active if I get sick while pregnant.  If my Oxygen sats go to low it can damage the baby...and since many oral antibiotics are a no-no while pregnant, they tend to treat aggressively with IV meds.  I am ok with that as long as it will be safe for the baby.  So I am not anticipating much drama at this visit.  Just a chat with the doctor.

Then in the early afternoon, I have a pelvic ultrasound and an MRI to check my cyst.  I am really dreading my period this month...its due any day now.  I was literally in pain for 2 weeks last time, I feel like I just finished being miserable and now its going to start all over again.  The fertility specialist had found a large cyst on my left ovary during some testing on my cycle day 3 last month. The cyst pretty much means that ovary is non-usable.  The only way to get rid of the cyst would be to surgically remove it and chances are it would come right back if its endometriosis. And she doesn't want to unnecessarily put me at risk by having to put me under anesthesia at this time.  For right now though, I am going to go back on birth control for at least three months until right before we start IVF.  That may help some of my pain and might help the cyst to shrink a little.  It won't go away completely, but since my right ovary is fine we can just use that for IVF.  And once we (hopefully) get our baby, we can re-assess the left ovary.  The ultrasound tomorrow will check the size of the cyst again and the MRI will help to determine what type of cyst.

The good news was that my right ovary is fine!  We should be able to use that side for the IVF and if we are lucky we will have a few eggs to freeze.  As I keep saying, I am just eager to get this whole thing started.  Especially now since I may have limited fertility.  The doctor did say to do IVF as soon as possible since the one ovary sucks.  And after tomorrow, we go back in two weeks on May 17 to meet with the fertility specialist and decide on an action plan. After that we'll have to get insurance approval and then move forward with the genetic testing.  The company will have to create this device before we do anything, so I am really crossing my fingers that insurance will approve FAST so they can get moving on that.  AFTER that we can start treatments for the egg retrieval. It's a huge hurry up and wait game.  Wish me luck that I have patience to deal with all of this.

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