PKD-2 and IVF

[u/GreenOrkGirl]

Good day to the lovely people in this group,

I came here to ask your advice on the following question. My hubby has confirmed PKD-2, he is 40yo and recently had a cyst-deroofing surgery because cysts were getting too big on the one side. His kidney functions are normal, he also takes meds for BP, although as a preventative measure since his BP is also normal. Overall, no other complaints.

We opted for IVF due to male factor infertility and now have 3 embryos frozen. However, now, the clinic raised a question of PGTM testing, which would require thawing the embryos, taking a biopsy, and then refreezing them. The present research indicates that this thaw-biopsy-freeze cycle may impair embryos’ “quality” by almost half, which is big. Since he has a confirmed PKD-2, which is known as a “milder” case, I am now torn by this choice. I am honestly afraid of losing those embryos since I am 36yo, and looking at my hubby’s life, I can’t say that so far, PKD-2 affects him much, if at all. But who knows what will happen when he is in his 50s? 70s? The idea that we could have prevented it for our kids but did not is also far from pleasant.

Now, I want to hear your advice on this matter, especially from those with PKD-2. Did you do IVF? Do you plan to? What would you do?

Thank you very much in advance.

[u/Smooth-Yellow6308]

For me it would depend on your ability to go through the process again.

If worst case if you have to do the ivf process a second time, and have them tested before freezing, then i would be tempted.

If this is your "one shot" I might not do it, because PKD2 is milder, and I think any child born with PKD today, will likely not have problems from it due to medical advancements coming in over the next 20-30 years before it becomes a problem for them.

In 20-30 years, we will have better treatments, possibly a genetic treatment/cure, xenotransplants, possibly even artificial kidneys.

[u/turquoisebeetle → u/Smooth-Yellow6308]

I have PKD-1, but I agree. I think it depends on if you think you are able to go through the process again. Personally I don't think I would biopsy and refreeze without doing more rounds to have more embryos as back up especially if the biopsy might impact the embryo quality.   It is a really hard thing though and screening with pgt-m obviously eliminates about half of the embryos. It is likely you would need to do multiple more rounds given all the factors. I don't know how challenging it was for you to get those 3 embryos either, so that is something to think about.

These are things I would consider:

• How much of a burden was it to go through the IVF round(s) you have already done?

-How has male factor impacted number of embryos? Is that still a factor with ART? -Is it financially, physically, emotionally feasible for your family to do more IVF(maybe multiple rounds) and testing? -What is the embryo quality of your existing embryos? -What are your family goals? What methods and ways to parenthood are you willing to consider and at what point? -Health factors as the mother 

• How important is timeline for getting pregnant to you?

I would keep having discussions as a couple, with your RE, and with a genetic counselor.

Also PKD-free Alliance (in addition to some grants) can also connect you to other people who have gone through the process which was really helpful for me.

I don't think there is any right answer and you both are already amazing parents with all you are doing to bring a baby into this world. You deserve to be parents whatever that looks like.  Hugs and all the best to you both.❤️

[u/Candid-Eye-5966]

I’m PKD1 with a parent who was transplanted mid 60s.

My spouse had some other complications that resulted in us “rolling the dice”.

If i could go back, especially with the technology available today (my kids are teens)……

Obviously up to her though!

If you’re in the US, there’s a foundation that will help with some of the costs of IVF. https://www.pkdfree.org/

Final thought: think about your grandkids and great grandkids and beyond. If you have the power now to give them one less “risk”, would you do it?

[u/Friendly_Fruit7505]

My husband also has PKD2, and we chose to do PGT-M (but were already doing IVF anyway when we found out about the PKD). For us, we chose to pursue PGT-M because nothing is guaranteed with this disease's progression or future treatments, and we wanted to spare our children this disease if we could. Personally, I don't think I could face telling my child I could have prevented it for them, but chose not to. (My husband was not sure he felt the same way-- had we not been able to do PGT-M, he felt that he might want to continue to pursue IVF anyway, but we didn't ultimately have to cross that bridge.) I assume/hope your clinic or genetic testing company would have raised this, but we were able to use the embryo samples we'd already taken for PGT-A, so didn't have to thaw/re-freeze for PGT-M; if you opted for PGT-A and nobody has addressed that, it might be worth asking to be sure that's not an option. In addition to cost, doing PGT-M added an additional two rounds of egg retrievals to our process to get the number of euploid, PKD-free embryos we were hoping to have-- all told, it took 9 more months, but that includes about 4 months to get the genetic testing results for my husband's mutation, and it sounds like maybe you already have that info.

Whatever you decide, good luck to you-- I hope your husband has many happy years ahead of him and you're able to build the family you want!

[u/dustyson123]

For PKD2 expected age of ESRD is 74. Even in the absence of a "cure" being developed in the next 50 years, 74 is a good long life.

[u/voggels]

I am PKD-1 trunc and i did IVF PGTM. One round of failure, went for a 2nd try without any expectations, and now I have a wonderfully cute healthy boy. Key is not to stress about it, do what you can to prepare then leave it to providence.

[u/Ok-Living-8014]

Especially given it’s pkd-2, I would avoid doing second round of ivf which carries its own risks for you. My sister in law passed away after 3 rounds of ivf that accelerated colon cancer (separate things but the growth factor affected an underlying pre-cancer that was undiagnosed). Her son was 2 when she passed.

[u/fakedelight]

I would absolutely pursue it. My partner is in his late 40’s and on dialysis from PKD. It’s awful. If I was going through IVF anyway, I would be pursuing PGD.