Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Hi
I am a 37 year old women with ADPKD and I am thinking about starting a family. My doctor has advised that I am healthy to be in a position to become pregnant and if anything I should get cracking.
My mother died of ADPKD at 52 from a related aneurysm, My mother was not aware this could happen and therefore was not monitored for aneurysms. I however have regular MRI scans to check what's going on in there!
I just wanted to talk to some other parents who have the disease to get their input about being a parent with PKD. My major concern is that something could happen suddenly like my mum but I guess anything could happen at anytime and I don't think that should stop me?
Your comments would be greatly appreciated.
I am a 37 year old women with ADPKD and I am thinking about starting a family. My doctor has advised that I am healthy to be in a position to become pregnant and if anything I should get cracking.
My mother died of ADPKD at 52 from a related aneurysm, My mother was not aware this could happen and therefore was not monitored for aneurysms. I however have regular MRI scans to check what's going on in there!
I just wanted to talk to some other parents who have the disease to get their input about being a parent with PKD. My major concern is that something could happen suddenly like my mum but I guess anything could happen at anytime and I don't think that should stop me?
Your comments would be greatly appreciated.
Welcome to the group. We've had questions like this before and they have produced very varied responses, depending on peoples' personal experiences. I had my children before I was diagnosed and although we can never really know what decisions we might make in different circumstances, I don't think I would have had children if I'd known about this disease. I feel very guilty about the possibility of having passed this on. I don't want my children to suffer like I have. In addition, for the last few years I've felt that I don't really have enough energy to finish the job as I would like to. It's been hard juggling pain, fatigue and the massive slowing down that this disease has brought, with bringing up children. There is an added burden for my husband and chronic illness puts a great strain on relationships. All of this is in addition to the possibility of something catastrophic happening at any time (though I thinks the risks of that are quite low) which concerns you.
Everyone's health and personal situation is different. I have a huge polycystic liver as well as enormous kidneys to cope with. Many people do not notice the ill effects of this disease until much later, if ever, so will feel differently. I have a friend whose mother had PKD. She survived an aneurysm in her twenties and was not other wise affected by the PKD. She died from cancer in her sixties and did not pass on the disease to her children, so it ended there.
Whatever decision you make , it will be the right one for you. As your doctor says, if you do go ahead, you should do it soon as the risk of other complications rises significantly after the age of 35 and dramatically when the mother is over 40.
Chewitt
I will keep in contact and let you know how I get on.
It's really good to know there is a support network out there.
If I were you, I would consider adoption before subjecting your child to the wrath of PKD, to say nothing of the fact that at 37 you are already considered a high risk pregnancy! I know children are precious but you will never know the guilt that I feel every, single day of my life! It's no picnic, let me tell you. I am so sorry that I had to tell you all of this, but I couldn't have lived with myself had I not. Of course this is totally your decision, but think long and hard about this.
Lots of love,
Norma ...
For me the choice to adopt was a no brainer. But my focus was on my children inheriting PKD, not on my own disease. Losing my father at 13 was a horrible experience and left me scarred since then. I have been in therapy for 30 years fighting PTSD and anxiety. Finding out I had inherited the disease made my anxiety worse.
I was diagnosed at age 22. I was told that pregnancy is hard on the kidneys anyway and if I had biological children I could end up on dialysis at age 40. There was a 50/50 chance my kids could inherit also. I wasn't willing to take that risk, but that's me. I'm a low risk type of person. I'm 64 now and at Stage 4.
Adoption was easier in the 1970's than it is now, but there are also so many other choices. There are donor eggs out there so that your husband can have a chance of having a biological to him child. Although expensive there is invitro if you chose to use the donor fertilized egg and go that route and have the birth experience, although it will still take a toll on your kidneys at some level. There are also surrogate mothers. All of these things are expensive of course.
A couple across the street from us adopted 2 little boys (brothers) last year, ages 5 and 7. They are the sweetest children and they needed good parents. There are so many children in that position and not enough parents willing to take an older child.
The decision is ultimately yours. But it's good to look at other options as well.
Shirley
Have you read the the PGD for ADPKD thread? Food for thought.
Chewitt
Thanks for the referral to the PGD for ADPKD thread. This is something I have also been considering. With everyone's input to my thread I am going to do some more research into it.