first, let me welcome you to a great support group. now to your questions:
you are aware that your baby could also have PKD, there is a 50% chance of it.
there is always adoption, please consider it.
as you said, many people are not aware of PKD when they have children. your situation is different, not only are you aware of PKD but you also have fertility problems that will probably require intervention if you are to have children.
as someone who has children but was not thrilled with the process I may not be the best person who can answer this. I had no idea that PKD even existed, now at least 2 of my 3 have PKD and one of my grandchildren has cysts on his kidneys. others have not been tested nor should they be.
at least in my opinion being pregnant and giving birth are not the wonderful experience some women believe them to be. I may be in the minority but had I known about PKD way back when I may have opted for adoption.
I'm sure you will get many opposing views and please consider them all.

Thanks for your reply!
My mother has said many times that she feels guilty about passing PKD on, so I understand where you are coming from. I will tell you the same thing that I tell her: I am grateful every day for my life and am glad she had me, PKD or not. :-)
I am open to adoption should it come to that, but my concern right now is really more about harming my own health with hormones and surgeries. If we're able to have children, I want to be healthy for them.
I appreciate your insight. I have so many things to consider right now.

Welcome! I'll have to admit that I've never heard of a septate (bicornate) uterus being related to kidney disease or PKD in particular; it's not listed as an extra-renal complication in any of the in-depth articles or studies on PKD I've come across and I'm quite PKD literate.

I am a stepmother of two wonderful, now adult, children. I made a decision when I was teenager that I would adopt, this after spending years working as a volunteer at a crisis nursery and later working as a volunteer and employee in a pediatrics clinic. Being diagnosed with PKD at 26 simply confirmed my decision; there is now way I was going to pass this disease, one that killed my father and uncle in their early 40s and caused innumerable problems for my brother from a very young age, along to a child (we also seem to have a near 100% penetrance rate; it's about the only lottery we do "win"). I've since found other family members who have/had other complications (all immediate family; aunt, first cousins), including a cousin who was 5-6 months older than me who died of a cerebral aneurysm.

Carrying a child to term is difficult at best with the uterine presentation you have to begin with, even with surgical correction. Add a pre-exisiting medical condition (PKD and the potential for high blood pressure and pre-eclampsia) and the 50/50 chance of passing this disease on to each child (50/50 chance with each and every child) and you may find yourself in the same position as your mother, feeling dreadfully guilty about passing PKD along to your child.

It's one thing to be happy to be here (I know I wouldn't have it any way, but then again, I'm already here, just like you). My mother (my non-PKD parent) has lived with the guilt of knowing that having children caused this to happen to her children: she not only lost her husband to sudden extra-renal complications of PKD (ascending aortic dissection) and became a widow at a young age (neither my brother nor I remember our dad; we were too young), but she's also watched both of her children suffer unduly because of this wayward gene we both inherited. My brother lost a signficant part of his colon due to severe diverticulitis (PKD-related) and suffered major cysts ruptures that required surgery and transfusions to control. I have a massively polycystic liver that is bent on world domination, one body at a time, and suffer from incredible pain and need a dual liver and kidney transplant. It's no wonder my mother worries each and every day about her children, and has for decades...and about far more than most parents worry about their kids as most adult children don't face these complications (massive bleeding, two children needing trasnplants, one a kidney only, the other a liver and kidney, etc.).

If you do choose to go for the infertility treatments (and treatments alone come with signficant risks unrelated to your kidneys, so please research that too), please look into pre-implantation genetics (may not be the right term)...it's the process where they confirm that the blastocyte (multicelled potential embryo) that will be implanted does not have the PKD gene. At least this way you can minimize or possibly eliminate the chance that your child will have PKD.

Regardless what the PKD Foundation says, there will be no cure for PKD in our lifetime. No genetic disease has been cured and ours is an incredibly complex disease caused by an extremely large gene that mutates like crazy and affects so much more than "just" the kidneys. A cure involved repairing that gene in every cell the body. And science is nowhere close to figuring out how to do that; they haven't even figured out a treatment for the cyst formation in the kidneys alone yet (but for 22 years the foundation has been touting that there will be a treatment and cure in "10 years"...and 22 later they're still claiming there will be a treatment and a cure in "the next 10 years"! Advertising claims to raise money is one thing, but they bring far too much false hope to people who are making lifetime decisions for future generations based on those proverbial "next 10 years".

Please do get that full workup with your nephrologist, regardless what decision you make in the long run. It sounds like he's on your side and wants to ensure you're at your healthiest, period, regardless what surgery or treatments you may undergo (all of which will impact your kidney function...even general anesthesia affectws the kidneys). There shouldn't be any "torture" involved; it should just be lab work and perhaps an ultrasound to look at your kidneys and liver. Nothing should be invasive (beyond the lab work and the needle stick...and perhaps the 24 hour urine collection.

Despite my personal feelings, I do not judge you or anyone else for your decisions. Should you choose to have children, I hope you have a smooth pregnancy and the most beautiful, happy, and healthy child ever! I just hope you look at the full picture and take all sides into account before making a final decision.

I wish you all the very best. In the long run only you, with support and input from your husband/signficant other can make the final decision, the one that is right for you. The challenge is stepping back and looking at the big picture, the long-term, long-range, overall 'what if' picture, not just how you feel today.

Best wishes,
Ruth

Hi Ruth!

I have had yearly ultrasounds, 24-hour urine tests, and etc for the last 21 years. Recently they've begun ordering MRI's too. I only jokingly call it "the torture" because I don't enjoy it. Carrying a jug of my own urine on the subway isn't my idea of fun, although I have often thought it would make an excellent weapon should someone try to mug me. :-)

I have also had all that time to consider whether or not I would like to have biological children, and I have decided that a 50% risk is one I am willing to take. My husband is on board too, and we really have given this all a lot of thought. It's not an easy decision and I understand your concerns about it, even if they do make me feel a little defensive.

If I could wish away my mother's feelings of guilt, I would. In my opinion they are ridiculous. I don't blame her in any way for my having PKD and wish she would give herself a break. As I said...just happy to be here. Some may find that silly, but I have a great life, all things considered, and many things to be grateful for.

I am so very sorry for the losses and heartache that you have experienced because of PKD. My mother had a successful transplant 7 years ago and is in great health. I wish you the same great luck.

Hi there and welcome. Just wanted to let you know I have had two children (and knew I had the illness with the second one). I just have to say that after my children is when my function dropped from perfect to fifty percent and the number of cysts after pregnancy was way higher. Not sure if this is coincidence or maybe why your doc has some concerns? Anyhow, I understand wanting your own children and know I wouldn't change a thing. Best of luck to you!!

If the surgery will correct your condition why would you need clomid?
I understand the ole clock is tickin and a baby is on a lot of womens minds at this age, what's so great about a baby? They poop , cry and scream, keep you awake all night and are extremely demanding.
I was told years ago I couldn't get pregnant because of my kidneys(I don't know why).
My 1st pregnancy over 20 yrs ago I had one kidney/uti/bladder infection after the other, I urinated cherry koolade almost my entire pregnancy. My 2 nd pregnancy I didn't have as much trouble ,had other problems. My 3 rd pregnancy 20 yrs later(in my 40's now) is when I started to become pretty sick. I urinated cola/black urine for almost a yr straight. Trust me being sick all the time with a 2 yr old is horrible. I'm a single mom so it makes it worse. It is hell most days and it's getting worse. I started to get sick when I was around 38/39 and diagnosed when I was 41.
Being older I just don't have the energy I did nor the drive.
Funny thing about this disease is it can change in an instant ,it can slowly porgress or it can take off like a tornado.
It's a lot to consider - it's not just about wanting a baby. I feel badly because I can't give my little man the attention he deserves and he sees me lying on the couch in pain more than he sees me smiling and playing.
It might me a wise decision to let your neph do all the test he feels necessary. Educate yourself all you can about PKD and talk to as many people as you can about their experiences.
I have to agree with spiderwoman - you can always adopt a child. There are so many unwanted-unloved children in the world who need someone like you to call mommy. If I wasn't so damn sick all the time I'd adopt a few myself.
Good luck to you whatever you decide and stay healthy.
Peace

Hi Graciegrace - I hope you still feel welcome to this outspoken group. I had my 20 year old son, at age 40, with full knowledge that I had PKD. I was not aware, at the time, of Type I and Type II; I just knew that my PKD mom was 62 and in good health, after having had six children. She died ten years later, after suffering terribly from the effects of a devastating stroke. The first three of her children have PKD, the last three don't. Go figure. My pregnancy was complicated by gestational diabetes and pre-eclampsia and necessitated a ten day hospital stay. The pregnancy did not affect my function, which has dropped from 1.1 to 1.6 in the last ten years. My health is good, my BP is under control and I haven't had to modify my diet in regards to potassium and phosphorus or start EPO shots -yet. In short, I'm doing pretty good.
BUT, I feel bad that I have passed this disease to my son. I loved having him, the delivery was a piece of cake (despite being hooked up to every kind of machine with tubes coming out off every orifice) and, I have loved raising him. The key word here is "I." My own conclusion is now that I was very selfish, in my need to have a baby. In hindsight, would I have deprived myself of the experience? I don't know. My son says that knowing he has the disease has inspired him to make good use of his good health and time here; to not fritter his life away.
You will read comments on this site that PKD is a terrible disease. I don't know. If I have to have an illness, I'd rather have this than diabetes or Cystic Fibrosis or MS or ALS or HIV or Hep C.
In short, this is a tough call that only you and your husband can make.
Good luck!
Lisa H

Thanks Lisa!
I agree with your last statement for sure. PKD stinks, and I don't love having it, but as diseases go it's relatively manageable.
And I don't believe, like some posters, that there will not be a cure or that there will be no advances in medicine. I have watched 4 different family members battle this with a transplant, and each one has had an easier time than the next. The anti-rejection drugs keep getting better. My mother has had the most success of anyone in our family and you'd never even know she used to be sick. And of course, there were recent clinical trials for a drug meant to slow down the growth of the cysts. So there is always progress.
I don't believe in Pollyanna optimism. But I think cynicism and negativity are worse.
And really, I just need to say this...it's not OK to tell an infertile person to "just adopt". And it's equally unhelpful to belittle their desire for a child by saying that kids are a crying horrible mess.
I'm not saying that to you, Lisa. I just want to put it out there. I've learned to brush those kind of comments off, but if one of these other "outspoken" women comes across another person who has spent months trying to accept that they can't have kids without a doctor's assistance, maybe they can find something less unbelievably offensive to say.

Hi Gracie.
I am a 31 year old mom of a daughter that just turned 2.
I found out I was pregnant with her 1 month after I was diagnosed with PKD. Since one year before that, my husband and I were trying to get pregnant and it was during the exams to find out why I was having so many urinary infections (and I already had one renal crisis, associated with that) that I found out.
My grandfather died from renal failure (at the time he was not diagnosed), and my mother, his daughter, also has PKD. Unfortunatelly, she was diagnosed when I was 10 and decided she wouldn't tell me. I found out by myself. I think she was in denial because she wished me not to have it. Now we are being followed by the same nephrologist.
In my first appointment, our doctor scared me into not having children. She said the chances of passing it on were "very high" (50%) and if I knew "the consequences" of PKD. It was a very troubling time because I had been dreaming of having a baby since very young and was already trying to have one for 1 year... And now, from no where, I was diagnosed with a degenerative desease that my mother hid from me... I was spiraling to a state of depression, because although I could consider adopting, I really wanted to experience pregnancy and birth... I started to look for infertility treatments, and for clinics that would do IVF with PGD, because I could not bear the thought of passing it to my children.
Thank God, I had my husband and he was very loving and understanding, and after a few weeks I discovered I was pregnant already. I think my child needed me to know my condition in order to incarnate (but that is just my view of it). I was suddenly filled with joy and also fear... I even considered abortion... But then I talked with a genetics specialist and my ob-gyn and they both told me that the diagnosis could only be confirmed after 16 weeks and by then it would be very risky to abort. Also, PKD has lots of treatments available and its a controllable desease (my mother is 72 and is still not on dialysis).
Then my doula asked me to think on a question you already spoke about: was I happy to have lived? Yes, i am. I lived 30 years without knowing what was PKD and acomplished many things and I am glad my mother had me. And then I relaxed and enjoyed my pregnancy. I was tested and although both my kidneys have cysts, I still had (and have) 100% renal function and my blood work was fine. I enjoyed each day of my pregnancy and loved my body. I had a fantastic home birth, in a birthing pool, with my doula, a midwife and my husband and I treasure this experience for ever!
Now I try to keep a good diet and am thinking of testing my child for PKD (pelvic ultrasound)... I hope she does not have it and I hope, if she does, she does not hold it against me one day. I try to live one day at a time and carpe diem.
Only you know what you want to do next. Try finding the answers and the baby will come to you, whether in your belly or through adoption.
But if you are really diagnosed with infertility, and have to go through a IVF, try doing a PGD. From what I have heard of, it has a low sucess rate (10-15%) but at least you tried.
Good luck!

just a comment about having a child tested for PKD. until we are sure that insurance companies do not have the right to deny insurance for pre-existing conditions, and they are fighting tooth and nail for the right of denial, even testing for PKD gives them an out.
otherwise, what good would testing do? would you love your child more or less because of PKD? would you take better care of your child because of it?
learning your child MAY not have PKD may give YOU some sense of relief, what if the results are different? many people don't develop visible cysts until later in life.
think very carefully before this testing is done. be sure that your reasons for testing are not pure selfishness. testing will, in no possible way, benefit your child.

Hi Spiderwoman8.
Thank you for having touched this subject.
In fact all my physicians told me not to test her yet "because it won't do any difference", but I hadn't tought about insurance policies... I guess you are right, the less she is tested, the less they can leverage on her probable illness to refuse insurance payments...
I think I would benefit from knowing because I could try to think of ways to explain the situation to her and to adjust her eating habits accordingly (although I already do both). But I won't deny it, it would allow me to breath deep and sleep better at night if I found out she didn't have it... This might be related to the fact my own mother kept her condition and the fact I could have enherited it (as I did) from me until I discovered it on my own, almost in my thirties. Although, I have been asked if I would prefer to have known and carried this "burden" from a young age... Maybe not. But I think I would have prefered her to tell me eventually, and then I think I would like to have been tested... Maybe it would have given me time to deal with questions such as having children or adopting them...
But thank you for you insight.
m.

Hi Gracie,

I have not had a chance to read all the replies.

Reading your post made my stomach jump. I started trying to conceive right after I got married at 36. I had (have) PKD and had good function at that point. Shortly after miscarrying after using clomid, I found out I had a septated uterus. I had surgery to correct it and then did several rounds of injectibles and 2 rounds of IVF to no avail. It turns out I had tons of eggs but they were all of poor quality. That is very unusual. Usually quantity and quality decline at the same time. After the 2nd IVF when I had 26 eggs retrieved and notopne of them divided normally, I knew that my days of infertility treatment were over.

My husband and I took a full year to decide what to do. It was VERY difficult for me. I cried buckets of tears. I wanted to conceive, carry and deliver a child very very much.

After taking a full year of consideration, we decided that raising a child was our priority and that we were open to looking into adoption. It has been said that adoption is not a cure for infertility. For me, I had to mourn the loss of the idea of a bio child before I could move to adoption.

Long story short, my husband and I adopted out little boy 4 years ago and he is the joy of my life. We have an open adoption which has worked very very well in our case. I have loads to say about adoption but that is for another day and another place.

I wish you all the best in whatever decision you make about fertility treatments. I was given the go ahead and I often wonder if I would have had complications if I had been able to carry a child. I ended up having a kidney transplant only 4 years after my final fertility treatment. My function declined very rapidly and I also wonder if the fertility treatments had anything to do with it.

In any case, I do not regret any of our decsions, even though the treatments did not result in pregnancy they gave me the answer I needed and they allowed me to accept the conditions and move on so I could parent my son.

Wishing you all the best.

Hi,
I just want to tell you that you being diagnosed at 16 and doing well at 37 brings me a lot of hope. (I have a 13 year old girl with PKD who was diagnosed at 10).
You seem to have an incredible attitude toward life, and I wish to congratulate you on it.
Regarding your mom, obviously your PKD is nobodys fault. But we are all human, and have feelings. She cares for you, and unfortunately, guilt is part of this disease, a big part. It may not be well founded, even irrational, but we are only human. We can control what we do, and what we say, but not what we feel. The important thing here is that you have let her known that you dont blame her of anything, and that you are happy and glad to live the life you have, which was a gift from her. This surely helps your mom, and although she may sometimes feel guilt (we all do), deep down inside, she knows the truth. So dont ever stop telling her, because it does her so good.
PKDAD