I'm sorry you haven't had any responses yet. maybe bumping this to the top will catch someone's eye.
I have no answer for you but we have some very smart people here and someone may be able to help.

I have no experience w/PGD, but, I did look it up -very complicated stuff - and if it had been available when I got pregnant, 20 years ago, I definitely would have pursued that options. Good luck!!

I was diagnosed with APKD in 1979. This is the dominant type and each child has a 50% chance of acquiring it. My mother and her two sisters had it. My wife and I did genetic counseling at the time and decided to have children. I am now 59.10 years old. I am on a no-salt diet, I take 82mg. aspiring and 40mg statin. I have had no symptoms nor have either of our two sons. My mother who died of renal failure and heart failure at 82.5years. I miss her but feel she had a full life. I feel that I didn't get a strong marker for this disease. Our sons have not been tested. Take it slow and consider the affects of the disease.

I'm with LHanley...I'd have done anything possible not to pass along this disease to my children. My Aunt died from the disease at a young age (20's) my mother is 66 and is still fighting off dialysis, although, she's right on the edge. My Mother has it worse in her Liver....she's never had to have a cyst drained from her kidneys, but many on her liver. My son found out when he was 9 and he has been asymptomatic since...... he is yet to have a problem w/ the disease and he is now 19.
I wish you the best of luck with the IVF. Keep us informed. :o)
Kellyn :o)

thanks all for your supportive words.. I am hoping to fight it and end it here for the future generation. I think since there is a technology available, I should pursue that option.

Anyhow, feel free to share any experiences with IVF/PGD..

Hi!
I was on the way to do a IVF/ PGD when I found out I was already pregnant.
The private clinic I went to (in Lisbon, but its a spanish clinic), says they could do a PGD to detect the gene of PKD.
My public hospital geneticist says otherwise: she says the gene is not always the same and that the tests aren't as refined for ADPKD as for the recessive form... That these clinics exploit the situation and the sucess rates are very low (10-15%). But this was 3 years ago. Maybe now there is some kind of breakthrough...
My geneticist also did not reccomend me to get tested for PKD because she says the tests are very expensive and its a degenerative desease that has lots of treatments and is manageable (in comparison with other genetic deseases)... I already had the confirmation from my personal history and kydney cysts...
Now, I would also like to know how the PGD status is because I want to give my daughter a baby brother or sister but this time, I would prefer to make sure (or at least try) it's a healthy one...
All the best,
m.

A scientific paper that can help you learn more about ADPKD and the PGD: http://www.ncbi.nlm.nih.gov/books/NBK1246/
best regards,
m.

I did IVF for reasons of infertilty and we also would have done PGD but none of our embroys ever divided so it turned out not to be an option.

I began to experience larger kidneys at the same time I was going through IVF. I have no idea if the meds caused the cysts to grow or if it was just a coincidence of time. I went through the treatments in my late 30's.

All the best to you as you make your decision.

I also have PKD and learned about PGD testing from a friend who is going through IVF. I am so interested in the testing!! We are recently married and will be wanting children in the next couple of years but I am going to start learning about it now. Although I dont know if we will have infertility issues (which will call for IVF) It would be so worth it to do the testing and although not 100% accurate, it would make it 99% more likely that the child wont have PKD- Essentially stopping it from traveling down my family tree (my father and I were the only ones with it). Good luck and I hope to hear about any news you may find out!! From my research the testing clearly tests for the PKD gene mutation so they can pinpoint embryos that dont have the abnormal gene and they can implant the ones that wont have it!

my DH has PKD and we did PGD. I can't comment on fertility meds and PKD because it was me who took them, not him. unfortunately - I did not make enough eggs - even with the highest doses of fertility meds - for PGD to be effective. research shows that the single highest predictor of success for PGD is the number of eggs produced (more relevant than disorder being tests, age of mother, even fertility). it was expensive, but from our perspective, no more complicated than IVF. The doctor had a couple of extra things to do. I'm sad it didn't work for us - and I know it's not right for everyone. I would say learn all you can about it, and decide for yourself. I would definitely recommend it if someone asked me, and if I made more eggs - I would be doing it again. If you have any questions - feel free to ask here or send me a message.

Hi I am male have adpkd 1 also in halt pkd. i am planning for kids PGD with pkd1 and i contacted RGI chicago who have this technology. I talk to my dr from mayo clinic he told me as per there past history of RGI the success rate with out pkd is 95 to 98 percent. I am male i want to try with my wife waiting for GENe anlysis. i want to know in this forum any one try with PGD with PKd please let me know. your help and suggestions will be great. I want to know any one success in this procees which will cost around 30k include ivf. please let me know any one success in this process.

my husband and I did PGD for PKD1. like you, he is the one that has PKD. it did not work for us, but the reason was because I do not make enough eggs. The number of eggs a woman makes is the number 1 predictor for success with PGD. She can get a hint of how many eggs she will make by going to a fertility clinic and doing an investigation cycle. most clinics charge around $50 for an investigation cycle. you need to ask the doctors there what her follicle count is. most woman can grow about half of the follicles into eggs in 1 IVF cycle.

feel free to ask any other questions - I'm happy to answer.
best of luck on your journey.

Thanks and I am very glad for your reply we are trying to have a kid since one year and we have tried 3 times IUI Insemination but it did not worked. My sperm count is below normal and my wife had Endometriosis . we are planned to go IVF than i got to know about PGD with PKD. i checked my wife previous in 2011 FSH is 6.98 Miu/ml E2 40 PG/Ml and prolactin 26.71 miu/ml (follicle count i have seen under Fsh and E2) it shows on the report like this
1. E2, FSH resulted CB... 40 pg/ml
Follicular 15-160 pg/ml
Midcycle 118-355 pg/ml
Luteal 27-246 pg/ml
2.FSH 6.98 miu/ml
Follicular 2.8-10.0 miu/ml
Midcycle 5.7-20 miu/ml
Luteal 1.9-10.0 miu/ml
Menopausal 41-124 miu/ml
Prolactin: 26.71 Ng/ml 1.0-25

I dont know about these values and i will ask my doctor to do follicle count and doing an investigation cycle. How much did you spend for PGD with PKD1.
Best regards
please provide yor email i will email you the details

each PGD cycle is roughly $20,000, including medications. you can not say exactly what the costs are because the amount of medication each person requires is varied and monitored/adjusted each day while you are cycling.

Hi I want to know where your husband done PKD 1 Gene Analysis as i am part of HALT PKD study they told me i have PKD-1 (truncating mutation) but they will not provide copy to RGI Chicago (who is do PGD with PKD1) I want to know is same RGI Is done for you PGD.

Now MY neprologist told me i have to do in Athena Lab for New GENE analysis PKD1 Familial Mutation Evaluation. Can you please provide me the details where did your husband done PKD1 Gene Analysis and how much does it cost for Him. I am planning to do and my Halt Nep is negotiating with Athena for less cost but they have not gave any decision from One moth if you gave me the details of if it is $1000 i will do it immediately
dint want to Waite so long wasting time.
Best Regards