Well.... PKD is a genetic disease... It's not something that you catch. You've had this your entire life. It just hasn't presented itself until now.

I find it a little odd that they didn't see it when you were 36. I'm 19 and my kidneys are covered in cysts already. Perhaps the technology just wasn't good enough to catch it 30 years ago?

Do you have any symptoms? High BP (blood pressure), pain, etc.? Do you know how many cysts you have and what your kidney funtion is? Any other complications?

I was first diagnosed in November 2007. I don't have any known family history so it was a huge shock. At first I was really upset and I cried a lot. Mostly in my car or in the shower or at night in bed when I was alone because I didn't want anyone to know I was terrified. I didn't know much about PKD so I started searching on the internet for more answers. I found some support groups, which were a life saver.

After a while I just sort of came to terms with it. I'm not really having any complications right now, so I'm pretty lucky.

One thing, though, is that I really make sure I don't take things for granted anymore. So for me, my diagnosis just gave me that extra push to try to be extra healthy, pay attention to what my body needs (I hate drinking and eating, but I have to stay hydrated and the knowledge of my kidneys encourage me to prevent dehydration.)

I don't really talk to my family or friends about it much. Not that I'm trying to hide it; most of them know already. And I do have to remind them periodically. Yes I do have to drink more water than most people (which also means I have to pee more). No I will not drink alcohol no matter how good you say it tastes. Why? Because of my kidneys... I'm trying to survive to at least see my grandchildren grow up, and that's a long time from now.

Plus I make sure that before I try new foods that I've never heard of I check to see how they affect the body. I'm a little more health concious than most people I know.

And every once in a while my back hurts or I get dizzy and I have to stop what I'm doing and take a break. I have to explain how PKD affects much more than the kidneys. Some people blow it off, others ask questions, and some think it's a tender subject and are afraid to ask. But I always want to tell people about it. I just also don't want to make them uncomfortable or bored/annoyed.

To keep my spirits up: Here is one MAJOR change I have recently made in my life: I surround myself with positive people (not super giddy, unrealistic people. Just no one who is going to be all negative about everything.) Lately I have confronted some of those negative people and told them that I do not need to deal with their negativity and if they don't stop then I will be spending less and less time with them.

By doing this I have made my life soooooo much easier and more fun. I've had anxiety problems for the last several years and am finally seeing my stress and depression turn in to happiness and excitement for life.

I always thought that I hope I don't live to be like 100 or something because I can't deal with this stuff for that long. But now I'm starting to think that living to 100 or even 1000 wouldn't be long enough.

All of this from simply removing the main stressors in my life and creating better social situations for myself. Not only do I feel better emotionally, but physically too. I have more energy and less muscle aches.

This is because stress takes a huge toll or our bodies. By relieving stress we are doing ourselves and everyone we love a huge favor becuase we can enjoy everything so much more.

Sooooo, my advice to you is to surround yourself with happiness (you know, not deliriously happy, but contentness). And those okay times will turn in to great times and those low times will be less frequent and less low.

Keep in mind that these changes never happen over night. It took me several months to work up the courage to take control of my life. But that's what it is, MY LIFE. And, sure, there are days when I feel really crappy emotionally (although it's usually hormone related). But I just hang in there and it'll pass and I'll be happy again even if it doesn't seem like it.

So just hang in there and try to be happy. Remember that you can always come on here and vent if you need to. :)

~Alona

wow Alona, I am really impressed. in the year or so I've "known" you you've learned a lot and matured a bit too.
I am someone who, when handed a lemon, makes lemonade. I always try to see the bright side, even if only to say you're lucky it isn't something worse.
a neighbor was complaining about everything yesterday and I said he should be glad he doesn't live in Haiti. yes its been a cold winter, yes the economy isn't great but the sun is shining now, we have food on the table.
I guess I should take Alona's advice and ignore this negativity.
a support board is not like talkiing face to face with a close friend who can identify with your problems but in ways it can be even better because you can bare your heart and your fears and someone who has "been there" can share their experiences and tell how they coped. the fact that they are there to share should be encouragement in itself. it means they survived what you are now going through.
ask specific questions, give details. we can be more helpful if we know what your challenges are.

Good Morning Austrian, it's a good thing that you have pkd at this age and not the age of that tiny little girl named Alona, she's only a baby and you and I are grown adults, far better equipped to handle this problem than kids her age, but they do exist far more than we could ever imagine. It's actually much more common for children to develop pkd than at our age.

I am 67 yrs. old and have pkd. I have known that I had it ever since I was about 38. It's not caused me any problems in the past, other than brain annurysums (that were taken care of) and a couple hernia surgeries. Oh and yes, I've had high blood pressure and taken meds for that. As far as anything else, I've been one lucky chick. We have pkd type II. It usually doesn't present until the 60's and mild at that. I am currently in stage 3 kidney failure but have been here for more than a year. With any kind of luck,
it won't progress any further, but there's no one that can guarantee that. It still might go there. Both of my sister's went into faiure in their 60's and were on dialysis. One has passed and the other is still alive and on dialysis.

Please keep your hopes up, being down in the dumps and negative accomplishes nothing. We are lucky people that we don't have what these children today have to deal with in regards to pkd. Do you have high BP? and are you taking meds for it? Thats would be a good place to start, taking control over your life. I stopped drinking any kind of caffiene when I was 38 and only recently relaized that in all likely hood, it has nothing to do with this disase, but I still can't bring myself to drink it, LOL I haven't taken any anti imflammatory drugs such as advil, asprin, aleve, none of those drugs are good for people with pkd. Only tylenol or prescription drugs you doctor would recommend.

At this stage of the game I would continute to eat healthy, unless your blood work shows otherwise, like high potassium, phosphorous,calcium,protein, etc. In that event, your doctor will recommend food for you to try and limit. Also Try and walk as much as you can, at least around a block or two, unless you have some other physical problems you haven't told us about. Keep yourself well hydrated, drink lots of water.

You sound angry about your doctor not knowing you have pkd. He probably didn't! I was lucky that my doctor did know, however the kind of pkd that you and I have is type II and doesn't present until later in life anyway, so don't waste you energy being angry at your doctor. It won't help and it wasn't his fault anyway.

Get your spirits up where they belong. We are so fortunate that we didn't have what almost everyone else on this forum has had to deal with all their lives. We are in our 60's! Alona is only 19 years old!

If you have any other questions, please feel free to ask. I know you are reeling in sadness now, but you needn't be, this too shall pass. Just ask away and you will find the answer to every question you need, with the wonderful people at this forum. You also can send me a private message if you care to. Good luck my friend and start your journey to happiness as of today!

Lots of love and hugs,
Norma..

THANK YOU ALL SO VERY MUCH FOR YOUR INPUT
I AM AT WORK AT THIS MOMENT AND CAN'T QUITE
DIRECT MY THOUGHTS TO EACH OF YOU INDIVIDUALLY,
BUT KNOW THAT I ACCEPT YOUR WORDS WITH HUMILITY
AND DEEPEST THANKS.
THANK YOU ALONA FOR YOUR KIND WORDS, I CAN'T
IMAGINE HOW I WOULD HAVE FELT AT YOUR AGE, WHICH RIGHT NOW SEEMS VERY LONG AGO..
NORMA THANK YOU FOR YOUR GESTURE OF FRIENDSHIP,
I AM HAPPY TO HAVE SOMEONE OF MY AGE TO COVERSE
WITH.

THANK YOU AGAIN, WILL BE BACK WHEN TIME
PERMITS.

AUSTRIAN

Hi, Austrian!

The comments of Alona and the others are absolutely the attitude the leads to the highest quality of life for PKD patients.

I am 62 and was diagnosed at age 22. I've had my transplant (donated by my wife) for twelve years.

Of course you will "up" days and "down" days. Most people do!

The "trick" is to develop an overriding attitude of optimism, curiosity, and to take a view of your life from the "higher elevation."

AS you have noticed, expressing your emotions is very helpful!

At any given time, you will probably have different support "needs."

Sometimes, "just" an ear. Sometimes, some practical education. Sometimes, a sense that "not knowing" is OK.

What would be interesting to this community is the actual stage of your PKD. Are you noticing any obvious symptoms?

The more details you share, the more the community can support you, and at age 65, I'm sure you have much "life wisdom" to share with the rest of us

Peace and Blessings!
CoachRichie!