Sorry. It still feels grim to me.

I think I understand where you're coming from, but it still feels really depressing to me. I was diagnosed with it when I was 16, now I'm in my 20s and still find myself just worrying over it at times. My kidney function so far has not dropped much at all but still it has me doing things like stressing over what I eat and what I do and everything, it's just a hassle. I am glad I know rather than not know early though.

Thanks for sharing your positive personal experience Henry. Hopefully things go well for many more with PKD, though there will still be some who are more severely affected at a younger age. Even then, though, with dialysis and transplant, a full and rich life can still be lived. Unfortunately, my last few years have been difficult because of the enormous combined size of my kidneys and liver. I have a very unusual presentation of PLD alongside the PKD. For the few of us afflicted in this way, life can be hard. I have to say, however, that if I didn't have the liver problem, I would be much more positive.

I am in no way down playing the awfulness of PKD. I've know of my PKD from a young age and have my share of negatives. On top of the PKD I have heart issues, depression, diabetes, high blood pressure, gastric issues, cholesterol both good and bad not in range. I am at stage 3 kidney failure. My mid section is large and I also have liver cysts. To add to the list I now have to look into what is going on with my gall bladder.

To add to this my dad who I mentioned above lives with me. Along with his PKD he has dementia. On the other end of things both my sons are +PKD. So trust me when I say I understand the grim side of this. BUT...... once one comes to terms with "I have PKD" and get educated about it the outlook gets better....

There are other diseases out there that are much worst than PKD. Just saying looking at things from the other side can make a difference in how we feel.

How we feel is a product of what our brain does with all the information available. No two people with the the same situations will feel the same. As you say, there are much worse diseases, too. We have to remember as well that PKD dies not exempt us from having other health issues and life problems. The trouble is, it can feel like overload sometimes when you have PKD in the background already. We have to look for the positive and try to hang in to the good things on the roller coaster ride.

Thank you for sharing this. I have just been diagnosed and plan on living well into my 80's. There are worse conditions out there.

Welcome Yaris1. We look forward to hearing more about you.

I love this thread. I read many threads on this site regarding PKD but never respond as I use it more as support and reference. This compelled me to sign up "officially" to join the discussion. I couldn't agree more with the sentiments of it is not necessarily the end and you can live a full life. I was diagnosed at age 27 while trying to conceive our first child. They thought I had polycystic ovaries due to pains and lo and behold I have PKD and PLD. My Dad and Grandfather both had PKD and have both passed away now but it was still a surprise as I had a false negative PKD check when I was younger due to unexplained horrible abdominal pain. No cysts had developed at all at that point. So I was crushed as was my husband. It felt like a death sentence at first. However, I went on to deliver two beautiful healthy babies that are now 12 and 14. With early detection of both PKD and PLD we have been able to monitor my progress and make healthy choices along the way (although I mess up A LOT in the food and caffeine dept as my Dad always said to me that you still have to live now and then and eat the damn steak or have the soda. On his death bed he regretted nothing for that very reason). He taught me a lot between my diagnosis and his death about living life to the fullest and that we as PKD suffers are much more fortunate than those with many other life threatening illnesses. We can manage this disease longer and even go on to live after our diseased organs give out due to modern medicine. My Dad got to stick around to meet his granddaughter for that very reason! So as hard as it may be from day to day with pain and other very difficult side effects at time, I choose to get up everyday and praise God for letting me stay longer. I am in my mid 40s now trying to work through my bucket list as well in case this disease "grounds me" so to speak due to dialysis or transplant.... even then though I will thank the Lord for each day I get to stick around and watch my children grow!! Thanks for this thread!!! Kinda like listening and talking to my Dad again!!