It has been a while since I posted...... my husband and I have our insurances in line and have our first appoint for testing....it has taken a long time to cope with this and decide what to do-- as most people here know all the fears and uncertainties of such a decision...

I am excited but scared.. excited to finally MOVE on with our lives and have kids but scared of the results....

If he tests positive--- the "plan" is to give IVF w. PGD one chance and go from there....

As most here know the decision to test is not easy and the decision to do IVF or not is not easier either....

I am sorry for everyone that has to make these decisions as none are easy to make, and there are sooo many questions/fears to cope with...

What if he has HD?... How early will I lose him? My kids will lose their father early.... What if IVF doesn't work? What if it does but I want more than one kid? Is IVF right for me and my faith? How can I deal with the costs of IVF? Is the disease that bad to do IVF...there are so many other dieseases out there? Maybe there will be a cure for my kids?

It goes on...but I hang to to the fact that at least I haven't lost my husband already... and my kids will at least have a father (assuming no other accident happens)... I hang on to the fact that at least we can consider IVF...... My Faith has grown and given me peace and I know NO MATTTER what we decide or what happens...everything will work out --- it maybe rough but it will be fine.

Wish us the best! I hope everyone here finds their peace!

If anyone has good advice on IVF--let me know... we are hoping to give it one chance and if it works then it was meant to be and if not then not meant to be....

I have heard sucess rates are low for IVF but I was under the impression that they are so low becasue so many people use IVF becasue of fertility issues...

Best of luck, Smiley. Don't forget that he has a 50% chance of not having the gene!!!

Will

Good luck! hang in there!

Carla

Best of luck with the testing. Hope it all goes well for you!

We're in very similar boats, Smiley (except that my husband and I have an at-risk baby). We're just beginning the testing process, too.

Best of luck to you and your husband. Hoping for a negative result for you!

Thank you all and Bluegrasslady wishing yall the best too!

I hope and pray that he doesn't have HD! Best wishes to the both of you!!

I wish you all the best . And I wish you strength . db

The blood has been taken... now for the wait for the results... excited to finally know.. either way I trust everything will be just fine! For now I am going to enjoy the last few days of not knowing

You are very very brave!

Hi Smiley,

I read some of your other posts and see that you are young....age 25.
If your husband does test positive for the HD gene then at your age you are a great candidate for IVF with PGD.
You will produce a lot of eggs at that age.

First things first....you need to wait for the results of the test.
Curious, did you go through insurance or pay out of pocket?
If you pay out of pocket and use a "fake name" then it will never be linked to your insurance.

That is what my husband did.
He has a CAG of 39.

We are starting the testing process for IVF with PGD.
Just so you know if you do want/need to do IVF with PGD then it takes time.
The prep work for the lab to get ready for the PGD portion is approx. 12 weeks.
And you also have to be tested to see if you insurance will cover the IVF portion or not.

For us we are paying out of pocket with the "fake name" for the PGD portion so it doesn't get link to our insurance.
And the IVF portion we are starting testing with our "real names".
We are hoping that our doctor will find it reason for us to do IVF and insurance will cover.
Otherwise we will have to pay of the IVF too.

It is a long process but in my opinion worth it.
In my opinion this is a way to end this disease by not having it go to the next generation.
I do realize that from a religious stance IVF with PGD is not something you should do but in my opinion is better than CVS test and potential termination.

This of course is a personal decision and no one should judge.

Good luck with the waiting of the test results.

Thank you...yes I have time on my side..still young. We did the test all out of pocket and anonymously. As for IVF, my insurance does not cover IVF for fertility...so I am not sure. We might give that a shot but not get our hopes up and be prepared for the worst (paying fully out of pocket- ouch).

Thanks for the info. on the PGD testing.. I didn't know it was 12 ..thought the prep for PGD was like 8 weeks but I guess it depends on the lab and family DNA...I figured we would just get my husbands results and then start getting consulting appointment with local IVF centers. If all this was meant to be God will make it possible.

I wish you the best through the IVF process---in all my reading and coping with it-- it is not an easy process. Until next time, we still wait for my husbands results

Good luck. And I hope you can find some positive distractions from thinking about the results. Hang in there. And remember that you are not changing your/your husband's FUTURE, you are just changing your KNOWLEDGE, so that you can best plan your lives.

Good luck smiley, I will be praying for you!

Thank yolu Smiling Sara---that is so true sometimes I think "oh goodness this one meeting about the results is going to change my life"--when it somewhat does but only in a good way because we will have better knowledge to plan--- and it doesn't change my life in the sense that the disease is there whether I know about it or not.

Thank you for your prayers TylerFitz--they are much appreciated!

Good luck! I really believe that the known is better than the unknown anyday!

I have an at-risk son who is 11. His dad (my ex-husband) is also at risk and hasn't tested. And I also have a daughter with my current husband. The infertility treatments aren't bad (I've gone through them simply due to infertility). The ability to produce many eggs has to do with more than age, but being young you are a great candidate for IVF and should have plenty of time to get it right. My insurance didn't cover infertility, but it's totally worth it. Children are a blessing!!

Fingers crossed for good results!

Well...the results were not favorable my husbands results came back positive for huntingtons. My husband has been super awesome and hasn't missed a step....I am a different story...still trying to cope but feeling much better today.

I thought I would have handled the bad news better, but it was not the case. Thanks for all your kinds words

I am so sorry that the result was not the one that we were all hoping for. Take time to grieve the result and then come out fighting. He is still at risk, he is not sick yet and just maybe the treatments will be here in time so that he will never be.

Oh, Smiley, I am so, so sorry to hear the bad news. Hoping that a treatment will be here before your husband ever experiences any symptoms. Thinking of you . . .

SOO SORRY to hear the news.....((HUGS))

~Ivy