Mr. Jem and I had a long chat with Jean (not her real name), the genetics counsellor yesterday as Mr. Jem has Polycystic Kidney Disease (PKD) in his family. His father, paternal uncle, and grandfather all had it. His father is currently on dialysis because of it. Obviously this is something we DON'T want to pass on to our child-to-be.
The good news is that Mr. Jem does NOT have any cysts, and at age 46, if he was going to get them, he would have already. Mr. Jem has seen two separate doctors over the past three years, and had two u/s that showed no cysts. None. I'm sure there are some of you out there who know what a happy thing that is.
PKD is not a disease that skips generations, so the likelihood of Mr. Jem being a carrier of the gene is almost zero. Testing takes 8-12 weeks for results, yes, you read that right, eight to TWELVE! Clearly, we don't want to put off IVF for 2 to 3 months. Not happening. If we thought there was the smallest chance of passing on the disease we would, of course, but Jean agreed with us.
The other thing we discussed with Jean was testing for diseases for people of Jewish ancestry. Luckily this only takes two weeks to get the results.
Dr. Wonderful wants to put me back on BCPs and push back starting stims until Oct 16 (instead of tomorrow, Oct 2). I suppose I can live with this.
Mr. Jem doesn't want to do any of the test. If we weren't going through ART, this wouldn't have spoken to a genetics counsellor. I'm scared as it is that I'll have a baby with chromosome issues, which is much more of a possibility than PKD or Tay-Sachs disease.
Arghh. What to do? Dr. W wants us to test. Mr. Jem doesn't.
Yet another reason that IF sux!
Jem
3 comments:
Hope all work for you.I'm going through an IVF ICIS and using donor eggs becouse my FSH was 27(not good) the best result would be under 10. My husband and I decided to use donor eggs. I'm 40 so the chances are alot higher for me to use donor eggs. Good luck to you
I guess you could look at it from two angles.
1. You have a chance to check for these genetic issues and make sure the embryo put back has the best chance of being healthy.
2. If you got pregnant the "good old way" you wouldn't get this chance but would it really matter? And if it doesn't, why does it matter now?
My thoughts are with you in this hard decision and I'm excited for you to start stims soon :-)
Hi - I hope all goes well with the genetic testing. I have PKD and I've been monitored since I was 21. When we did the genetic counseling we were eager to do the embryo testing for the gene. After much discussion, we came to the conclusion that we were always ok with the 50/50 chance of our kids inheriting the PKD gene when we were trying naturally. I also had a long talk with my mom (who had PKD, a kidney transplant, etc) to get her thoughts. She's all for embryo testing but she also realizes that if she could have done that when they were trying to have me that I wouldn't have been born. Ultimately, my husband and I decided not to do the embryo testing but it took us quite a while to come to that decision.
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