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Trying to Conceive

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update on me

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  226340.1
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  Nov-6 5:43 pm

Hey guys,

I haven't been on the boards for about a month and last time I was on I was completely stressed because I had a nightmarish cycle, finally ovulating on CD 92, with an idiot doctor that just told me to relax.

Anyway, just wanted to give an update.  I found a RE five minutes from my job and across the street from Court (I'm a lawyer) and they take appointments from 6:30 a.m. on, so I can go there without anyone at work knowing what's going on.  The RE put me on clomid right away, having no doubt in her mind that I was PCOS.  They have ultrasound machines right in their office, and basically I had been there every week to monitor my hormones and get an ultrasound to see what my follicles are doing.  Given the weekly ultrasounds, I decided to stop temping, which was just one more stress in my life. 

Sooo...she put me on 50 mg clomid to start, and it looked like it was doing something, I had a 10mm follicle.  But, in the next couple of weeks, the follicle wasn't doing anything.  So she decided to put me on 100 mg Clomid.  Then came the big stumbling block, they did bloodwork and found out that I am a carrier for the Cystic Fibrosis gene.  I was completely shocked (there is no history in my family) and heartbroken.  I had to have DH in right away to be tested, and they suggested we abstain in the meantime.  My DH has a 2nd cousin who was diagnosed with Cystic Fibrosis recently, so I was really scared he had the gene too, and I just couldn't see taking the chance and bringing a child with that severe of a disease into the world.  We had to wait two weeks to get the results, but in the meantime I continued with the clomid and kept going to my appointments to see if it was working. 

I kept busy with work, and tried to stay positive, but not knowing whether my husband was a carrier was really weighing me down.  The thought that we could not have a healthy child naturally was killing me.  As if it wasn't enough that I wasn't ovulating, this was a much bigger hurdle, that was completely out of everyone's control.

Anyway, while we were waiting for DH's test results I was dealt another blow. They ran a complete genetic panel on me for the "Ashkanasi Jew diseases" and found that I am also a carrier for Usher Syndrome III.  What the hell is that??? I asked.  My doctor didn't even know, it was a new disease they added to the panel, but I needed to bring DH in for testing again, and she gave me a card for a genetic counselor.

I was so upset, but I googled the disease and found that while it is by no means a good thing, it's not nearly as horrible as Cystic Fibrosis.  Also,  the gene I had was the most rare form (go figure), and there was no reason to think DH, who is not jewish and not from eastern europe, had this gene.  The disease is something that causes vision and hearing loss, but the children are born normal at birth and able to learn to speak and read, and they lose their vision and hearing later in life, but not necessarily to the point of blindness or deafness.  Not something that I would ever want anyone to have, but in my opinion, it wasn't a reason not to try to conceive.  Nonetheless, I brought my husband for testing so we could know one way or the other.

The day I brought him for testing was exactly two weeks since he had been tested for the cystic fibrosis gene.  When they called us up I asked if they got his results.  The nurse looked and saw the report.  She said "yep, he was negative".  I immediately started bawling and couldn't stop.  The stress of the past two weeks came out and I was overjoyed.  Everyone was really sympathetic.

The following week I had another appointment and I told the doctor that we decided to go forward regardless of whether DH has the Usher Syndrome gene.  But, turns out the 100 mg of clomid didn't work too well either.  The follicle had grown to 13 mm and then stopped.  She said she thought it was time for provera, and she thinks 150 mg will work, since it looked like the 100 mg was trying to do something.  So, by the time it's time to ovulate I will have the Usher Syndrome results anyway.  I am not really concerning myself with it, but in the back of my mind I am hoping fate is not so cruel as to give my husband this rare disease as well.

So, that's where I am at.  I am waiting to finish the provera and bleed, and then I have to go back to the RE on CD 5.  I know that when I do finally have my child, they will be that much more special to me because I am working so damn hard to have him/her...I never thought trying to conceive would be like this.

Hoping everyone else is doing well.  I'm trying not to obsess too much, so I am limiting the time that I am on these boards, but it's nice to know I'm not alone.

renae70  Member Icon
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  renae70  Member Icon
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  Nov-6 8:34 pm

Hi Rachel- I don't really know you because I tend to stick to my buddy group on this board...mainly so I don't obsess too much like you were saying. Anyway...it sounds like you have been on quite a roller coaster lately. I'm glad your DH's results for CF came back negative. I had a student (one of a set of twins) in my 1st grade class last year that had CF...both twins had it since they are identical. It is definitely a tough disease to deal with so it is a blessing that your DH is not a carrier.

How terrific that you have found an RE that you like so close to work. I really hope the 150 Clomid works for you. Baby Dust to you!

Texas Siggie

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  Nov-7 11:32 am

Wow- what a rollercoaster. I guess that technology is sometimes a great thing, and some times not such a welcomed thing either!  Glad he's not a carrier for CF, I can't imagine watching a child suffer from such an awful condition.  Good luck in your journey!

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  Nov-7 1:37 pm

Rachel-

WOW!  I am so glad for you that your child will not have CF.  Years ago I worked with a family and the baby had it!  It was a rough road getting him to eat and gain weight and pretty stressful for the family!

Good luck to you sounds like you found a doctor that will work for you!

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  Nov-9 10:25 am

Rachel - I just wanted to send some positive thoughts your way.  I understand the stress that goes into the wait in all theses tests etc.  I understand your pain also in your genetic carrier situation.

I too have a genetic condition.  It's a balanced chromosomal translocation.  DH and I understand Karyotype testing and some other things to see what was going on.  I am also PCOS and was diagnosed about 6 years ago.  Thank God my DH's tests came back normal.

ANd you're right, every child is loved but our's will be extra special because we'll understand the pain we went thru to get there.  Just wanted you to know that if there is some certain genetic issues that you might want to consider IVF w/ PGD.  It's what me and DH will be doing as soon as we save some money.  It will take my BCT out of play so our baby will have a fighting chance to be healthy.

Just a thought ... But either way I wanted you to know you're not alone.

VOTE on my Name List     http://www.fertilityfriend.com/home/lgjolly

 

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                                             www.fertilityfriend.com/home/lgjolly

1/4/09     - BFP!
1/27/09   - m/c @ 7 weeks
5/1/09     - BFP again @ 9DPO
6/9/09     - u/s shows fetal pole w/ no HB.  Should be visible by
              now.  Dr ordered HCG test.
6/12/09   - HCG decreased from 2 days prior.  Another u/s
                ordered.  Showed less than before
6/19/09   - m/c
7/15/09   - Dr appt.  Put on BCP for further testing.  On Hold.
9/9/09     - Met w/ geneticist.  Found I have a balanced
                  chromosomal translocation.  Recomended IVF w/PGD.
10/22/09 - Appt w/ RE.  Found out we can do IVF w/PGD.  Just
                  need 8K to move forward.

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