Wednesday, June 22, 2011

Genetic Testing

Lately, I've been thinking a lot out Cystic Fibrosis.  We recently just participated in the Great Strides walk for the Cystic Fibrosis Foundation. I walk every year  because my 1st cousin A has Cystic Fibrosis.  Recently, he has been taking the necessary steps to become eligible for the lung transplant list.  He's in the last round of testing and such and he'll be placed on the list soon.

My ex-husband's daughter also has CF. 

My friend high school friend, Linda, also had CF.  She passed away a few years ago -- we'd lost touch, but I heard of her passing through mutal friends.

So, I've been struggling with whether or not I want to get tested to see if I am a carrier for the CF gene.  The test is not covered by my insurance company, unless, of course, I were already pregnant.  In that case, the test would be covered.  (Isn't that a real kick in the panties?)

My cost would be $595.00 out of pocket.  This test would only look for the 23 most common CF mutations.  There are over 1000 CF mutations, so even if I tested negative for the 23 most common ones, I could, still, potentially be a carrier of one of the other 975+ mutations.

If the test comes back positive, I will then need to pay to have my donor tested for another $595.00.  I realize that this is equivalent to roughly 2 vials of sperm and that, overall, this is small potatoes in the land of fertility costs.  But part of me doesn't want to know.

My dad's side of the family has 2 people with Cystic Fibrosis.  One is a very distant cousin, and the other is my first cousin.  A is the son of my dad's sister.  My dad is one of three children.  None of his other siblings have had children with Cystic Fibrosis.  And further to that, my cousin with CF has a brother and none of his 3 children have CF either.  However, because of my family history, I would be slightly more likely to be a carrier than the average white Caucasian who has a 1 in 29 chance of being a carrier.  The gene appears to come from my paternal grandmother's side of the family.  She had 12 (TWELVE!!!) brothers and sisters and they all went on to have more than one child.  Yes, yes, I am from a Catholic, French Canadian, family. (And they love me and my lesbian self no matter what, too!) 

It's not really about the money.  I mean, it is a little because I really just don't have extra cash lying about.  I could use my FSA to cover my test, but I don't think it could be used to cover my donor's test.  The issue is that if I test positive, I will then feel compelled to have him tested. I don't want to lose this donor.  If he and I were both carriers of the CF gene, the child would have a 1 in 4 chance of having Cystic Fibrosis.  I'm not sure how much more  likely I am to be a carrier for the CF gene given my history.  He is a white Caucasian, but he is not of French Canadian descent and he has no familial history of CF on either side, so he is less likely to a carrier than me.

I'm scared.  I am so comfortable with my donor.  I trust implicitly that he would stick to the terms of our agreement.  I trust that he will be thoughtful and respectful in all of the ways that made me want to choose him in the first place.

Generally, I am an overly cautious person.  So, this resistance to have this test done is actually surprising to me.  I'm not a gambler. However, the odds appear to be in my favor.  If you scroll down to the bottom of this page, you will find a chart detailing, statistically speaking, my odds of having  a child with CF or not based on a number of different variables.

My donor currently has a daughter, she does not have CF.

It should be noted that in order for a child to have CF, BOTH parents, or in this case my genes and the donors, would need to contribute one defective gene each.

In a nutshell, if I were married to my donor, would we get tested?  Would it matter? Would we even think about it?  Would we just have children?  I have the unique opportunity to test for this because I theoretically could find another option since I am not emotionally attached to my donor.  Except that I am, just not in the marrying kind of way.  I've been chewing on this one for awhile now and I'm still not sure of what I'm going to do.

What would you do?

Saturday, June 4, 2011

12 Months Sweetened and Condensed

June 2010:

I attended a DONA International seminar where I trained to become a birth doula. It was the begining journey of finding where I feel most at home.

July 2010:

Attended a National Organization for Marriage Protest (NoM) July 18th where this happened:

and then they lied about it! They were NOISE makers!

August 2010:

omg! I saw Debbie Gibson in Cirque Du Soleil!!!!!!!!! She smiled and WINKED AT ME!

We started looking at houses on the single hottest day of the entire year, I'm pretty sure. It was miserable!

September 2010:

I was diagnosed with Celiac Disease after having suffered from a painful "fatty liver" with very elevated liver enzymes, and a strange rash all over my body. Funny, this conincided with me finding a delicious rice blend that included black barley.... and I proceeded to eat it every day with dinner. Needless to say, I sadly threw out the rice blend... and it's delish little poison barley bits.

As part of the diagnosis to find out what was going on with my liver, I had 2 ultrasounds. While they were at it, I asked them to check out my ovaries.

After 19 months of acupuncture and herbs (and no f'ing birth control pills!!!) I received my first NORMAL ultrasound in over 10 years! My ovaries no longer appeared cystic and enlarged! They were NORMAL! My cycle was still a bit odd (now I was bleeding all of the time instead of never), but things were improving! And I had scientific PROOF!

Ladies, if you have been diagnosed with Lactose Intolerance, IBS, GERD, or have had strange symptoms like face flushing and burning, heartburn, diarrhea, and problems with your cycle.  For GOD'S SAKE GIVE UP WHEAT, RYE, AND BARLEY.  Just go gluten free! Do it! I'm telling you...  It was the final puzzle piece in a long line of changes that I made.  Wait till you see what happens in April 2011!

October 2010:

1st two births in the same week! To say that this experience was transformative would be a huge understatement. 7 births later and I still struggle to put into words what it is like to experience birth. I'm not sure that it can be done, but I'll keep trying. I have never been more sure that this is what I was born to do.

Gave up on house hunting for now -- results in our price range were too bleak. we decided we would lazily look at listings from now until January. At that time, we would again begin reviewing listings with renewed exuberance.

November 2010:

Not much to report.

December 2010:

Not much to report.

January 2011:

Started looking at houses again... nothing fabulous.

February 2011:

On the 26th of February, we went to look at the most ADORABLE and affordable house ever. We thought it was too good to be true. We love, love, love, LOVED IT. 3 bedroom, 1.5 bathroom, 1270 square foot cape with a partial dormer in the front. Partially finished basement (FOR MY NEW OFFICE!!!), oversized one car garage attached with screened porch/breezeway, gas fireplace (we want to convert back to wood!), fish pond, swimming pool, FABULOUS WOODEN swingset with tree house, shed, large nearly 10,000 sq. ft. yard, adorable neighborhood, hardwood floors. It was literally EVERYTHING we wanted, but it was a short sale. We decided to take a day to think about it. It would need mainly cosmetic work done -- paiting and floor refinishing in order for us to move in. The tile in the shower absolutely needs work before we can move in. This all seemed very doable.

March 2011:

On March 1, my mini schnauzer Jackson died in my arms very unexpectedly. He was not sick. He was running around fetching a toy and in 3 minutes he was dead. I will post separately about this later. It was honestly, the worst day of my life. Without question. And I have been through some very tough shit in my life.

Snapped back to real world on March the 3rd -- we went to see the house again and decided to make an official Purchase & Sale Agreement. The original offer that was on the table would need to be formally rejected before our offer could be considered. Our realtor set the agreement to expire on May 5th.

It was very difficult to go from being so sad and upside down, to having ot make a huge decision, but time was of the essence.

2 days later, we found out another offer came in just after ours did and the original offer still had not been rejected by the bank. So, they hadn't even seen our offer yet.

April 2011:

Our realtor begins encouraging us to keep our options open. We've been looking at listings, but really nothing grabs us.

We spend an entire weekend doing house drive-bys. Out of 25 listings, we come away with 5 that we are only mediocre on. I refuse to move anywhere else but the house we already put the offer on. :-)

I bought an Ovacue Monitor in March -- and holy shit I am ovulating!!!!!!!!!  The Easter Bunny was not the ONLY one with eggs this year!! :-)

May 2011:

Our agreement expires. Realtor reminds us again to keep looking. And then 4 days later, he calls and says that there is FINALLY movement! The original offer is being rejected and our offer would be presented along with another one. We decide to up our offer by a little bit to be SURE our offer is the one that is selected.

We renew our offer and expect it to take weeks before we hear anythign again. 4 hours later, the realtor calls to tell us that we just bought a house! CRAZY! But YAY!

I ovulated again!!!! My luteal phase is still too short, but I'm OVULATING!!!!

June 2011:

Sealing up house buying requirements and PACKING. Closing date is tentative for July 1, but the bank has indicated repeatedly that it will likely be the last week in June! EEP!

I am just starting to get into my fertile window according to my ovacue monitor.  Last month, my first ovulation attempt failed, but the second was successful.  I'm hoping that this month, it'll work the first time my body tries.  I am also hoping for a longer luteal phase.  With all of the excitement and stress going on, I'm expecting a very wonky cycle.

Friday, June 3, 2011

Shouting out to: A Womb of My Own

I miss you and I have no other way of contacting you. :-(

I hope all is well (and if you wanted to add me, I'd be oh so grateful!)

To everyone else, I've been working on a recap of the last year (sorry!) and hope to begin blogging with gusto again real soon!