I am a first generation PKD sufferer (parents unaffected) and wasn’t diagnosed until I had had my two sons. I still feel extremely guilty that I may have passed on this disease. I personally don’t think I would have had children if I’d known about the PKD. I know many people have posted on here about their decisions regarding children and many go ahead in the hope that they will not pass on the disease, but also, if the child is affected, that medicine/science will come up with something better to help in the next few years. They are optimistic for the future. Perhaps your parent was thinking something similar. Perhaps your parent’s feeling was that at the time of deciding to have you the effects of the PKD weren’t so bad.

Whatever the reasons, there is really no point in dwelling on all of that now. You’re here and need to learn to cope with life with PKD. We have to remind ourselves of all the good things in life and not make life all about the disease. Many people have difficulties of one sort or another but we tend to have a perception that everyone else is having a better life. It is tempting for us to blame our parents for all sorts of things, but we have to move on. Focus on the positives and remember you are not alone. Perhaps talking to a counsellor might help you to move forwards. We are always here, too.

Hi Bellz,

I'm 43 and I've just been diagnosed with PKD 6 days ago.

I've been advised years ago while attending to my father who I inherited the disease from at a hospital. A doctor recommended that I and my sister check for pkd.

The idea of coming to know of a disease that is life threatening can be scary and affects one's way of living, so I didn't check and I thought I have nothing to lose anyways. I'm single and have no kids... Fortunately.

I understand your frustration, it's absolutely natural and healthy to explore all your emotions at first. I've been subconsciously blaming my parents for a long time, but my faith kept me going strong and I never confronted them with my worries regarding probable health concerns.

Having witnessed my father suffering with the disease, I'm aware of the pain and the future that I'm facing. And I will be passing through all sorts of psychological ups and downs.

My faith is the one thing that helps me cope and accept.

So, without going into any further details about how I feel personally right now, because it's all still new to me and I'm in the beginning of my journey with PKD, I can only tell you that you shouldn't suppress your feelings and that it is healthy to seek discussion groups such as this one so your don't feel alone and maybe explore ways of acceptance and cope with your condition.

Take your time, but then put those feelings aside ( don't suppress them) and begin focusing on the next step into managing your emotional and physical status.

Personally I believe us humans are capable of anything... Hoping for cure or coping with the inevitable fate.

Not everyone share equal circumstances when it comes to dealing with illnesses .... Financially, socially, emotionally....etc

I'll be posting thoughts and questions soon too.

I feel you

Thank you both for your replies! It felt really good to get it all out there. Thankfully, my kidney function is still at 100%, biggest cysts are 2cm, and I don't have high blood pressure yet. I've decided to get my tubes tied so that I do not pass on this awful disease to anyone else.

I definitely will get in touch with a counsellor as well in order to sort through all these crazy emotions. Thank you again for taking the time ti write back to me, Chewitt Typongtv :)

Hi there, I agree with most that have been said. I have inherited mine from my mom. I am 40 and just found out I have it. Not easy definately. There are some options that are available and many more to come. I try to focus on the positive and think that there are worse things out there. I think that the state of mind is really important even more so then the disease itself. I am sure every parent wants the best for their child and I am sure your parents for sure didn’t want this for you. Stay hopeful, love your parents, live your life to the fullest and remeber that we all have limited time on this earth. ( pkd or not)
Aleks

Hey Beliz!

So I literally just read something I wrote like 10 years ago! I have known my entire life. I have watched family members struggle and die with PKD. Sometimes I joke that PKD and depression is the only thing that my family passes on. I find dark humor really helps me get through it. But yeah, years I was furious with my parents for having me. They were young. I really struggle with whether my life is or is not worth living as a person with PKD.

But knowing what I know now, I have made peace with having PKD. It has pushed me to live a more fullfilling life that I may be able to look back on if/when I am disabled.

I totally support your decision to do what you want about your body. I felt the same way. When I had a surprise pregnancy, it shattered my world. There are no words for how miserable that feeling is; planning on not having biological children to finding out that you are and how you might have damned someone to a life you wouldn’t wish on anyone. It SUCKS.

If children was something you are interested in, adoption, always perfectly perfect. But if you need bio children to have children and you desire, allegedly your eggs with PKD can be weeded out from nonPKD eggs. I am not pushing you to have children, but I want you to be aware of options. Also, I had the mirena put in, and it has been a blessing! No periods, no pregnancies, no pills.

I 100% support you in your choices. Good luck!

Chels

I realize it's difficult what you're going through. However, you only have two choices you continue to be angry at your parents for wanting to love a child so bad they brought into the world or you can accept it and enjoy what life has to offer. No matter how mad you get complain it's not going to change the fact that you have PKD. I'm 46 stage 4 renal failure I'm up against needing a transplant very soon however, I'm one of the most positive people you will ever meet, I work full time, and never ever once have I allowed this illness to determine whether or not I will be happy or sad. You need to change your attitude be accepting and move on one foot in front of the other.

I am in the middle of both worlds, I was never mad at my Dad for passing it to me. I was just upset that of the 3 kids I was the only one that got it. Mad at why only me. Then passed it on to both my kids. I was not aware of PKD when I had them. I am heartbroken that they have to deal with it in their own way, but I don't regret having them. I have hope that their lives will be better than mine as mine is already better then my dad's was.

Hey Beliz,

I want to comment on the part about your decision to not have kids. I was diagnosed at 29 and was completely devastated after getting the diagnosis. My parents did not know about the disease until much later after they had kids, so I never got upset at them. However since I was already thinking of having kids when I was diagnosed, and wanted kids so bad, I went through checking all my options. I am happy to announce that I went through a procedure called IVF with PGD (Preimplantation Genetic diagnosis) and successfully had 2 kids of my own. In this procedure, embryos are prepared using IVF, and tested for the disease gene. Only disease free embryo is transferred to uterus for implantation and further pregnancy. Please google and you will find all the information, also you can PM me if you have questions.

Please be aware of this option before taking any decisions with long lasting consequences. Hope it helps.

Hello,

My youngest son age 25 was just diagnosed with PKD.. as far as I know there has not been anyone in our families that had this however that doesn't mean that there isn't someone out there..
My husband and I are going to get ultrasound of our kidneys next week (they are actually going to do my entire abdomen because I am female (?) anyway.. I have a strong feeling that I am going to find out that I have it as well. I am 54.
I am scared to death not for myself but for my other 2 children whom the doctors have suggested get tested as well but they don't want to know.
I am petrified for the life that my 25 year old will or will not have as well as myself.
What are we to expect? I keep reading that the life expectancy is like 53-59 which means I am almost there.
I had blood tests this summer as part of my annual physical so I know that then my kidneys were working as the should.. but that was before our son found out he had PKD.
I am sorry to ramble … I just needed to voice my feelings.

Thank you... I pray that a cure or a management regime will be found very soon for us all.

God Bless.

Hi there imataloss,

First of all, I’m very sorry about your son’s diagnosis. However, please try not to panic (easier said than done, I know). You don’t mention what his level of kidney function is, but at 25 it is probably still good, if not normal. This is a disease which often shows no symptoms until later in life. In addition, there are two types of PKD: type 1 and type 2. Type 2 tends to be less severe and often causes people no serious problems. At the moment, you have a lot of unknowns. You and your husband are being checked, and though you fear a diagnosis for yourself, even if this is the case, it is unlikely to be a problem since your kidney function is good. Your lifespan is unlikely to be affected even if you have PKD given a normal kidney function at age 54. I am 52 and my function is at 16%. So, I don’t think you need to worry about yourself. Your son may be a first generation sufferer, which applies to about 10% of those diagnosed. He may have type 1 or type 2. He may or may not have problems. There is no way of knowing at this stage. You don’t want anxiety to stop him living his life. Worrying about things which never happen can have a seriously negative effect on someone’s life. If he makes healthy choices from now on, he will give himself the best chance of a full and healthy life. Then just carry on and make the most of life. There is nothing that can be done except looking after yourself, as everyone should anyway. Good luck.