Hi there,

I wasn't diagnosed until I was 40, but of course we all have this disease from birth. Looking back, I now realise that I had symptoms, but no significant problems. I had the effects of the concentrating urine defect from an early age (needing to urinate frequently) and some unexplained pain, but I had two normal pregnancies with no blood pressure issues until I was 37. I did have some UTIs as a child and in my twenties, but not too many, and in my teens a doctor noted that it was unusual to be able to feel my kidney on examination. Following an X-ray (no scans in those days) I was told that my kidney was lower than it should be! That was the last I heard until my diagnosis.

If you're lucky, PKD should not impact on you significantly for quite some years to come, especially if you make healthy life choices and avoid things suspected of exacerbating the disease. You may even be free of problems for several more decades.

Take care,

Chewitt

I"ve had an urge to urinate frequently as well since I was a child really. Also a lot of pain that I'm not sure of what it's coming from. It could be my scoliosis but I wonder at times if it might be from my PKD. It's really hard to tell at times, which is one reason I am curious as to the symptoms other people get. Not to mention there's been a few times when my urine has been red instead of clear or yellow. Just seems a bit worrying really.

I was diagnosed at age 23. I'm 64 now and am just on the precipice of Stage 5. It's taken a long time to get here. The better care you take of yourself the slower your decline I believe. I sure wish my doctors had known more when I was in my late 20's early 30's. My BP was crazy high and my doctor just said "Of course your BP is high, you have kidney disease." No thought to giving me meds to lower it. Now doctors know better. They know that high BP can cause kidney damage, not the other way around.

As far as symptoms I don't think I've had any but I was thinking today. I've had a really sore back the last couple of days. I just assume it's muscular, I've always assumed that when my back hurt. So maybe sometimes the aches and pains I have are from the PKD but I just don't think to attribute it to that.

Urine colour can be a problem associated with PKD but it also can be caused by other things. I took vitamins once that turned my urine day glow orange. Had nothing to do with my kidneys. But anything that seems worrisome talk to your doctor about. It's impossible not to worry when you have a disease like PKD so communication with your doctor is essential.

Shirley how long was it until your PKD started noticeably effecting you? I've been warned about my blood pressure as well, I check it sometimes just to see and it's usually pretty good so I'm not too worried there right now. About my urine being red it's only happened a few times and there wasn't anything I did abnormally that caused it. However the first time that it happened I was having pretty bad pain on my side the days before it. That is what I assume had caused it, perhaps a cyst had burst or something. I also have a lot of back pain but I have scoliosis so I believe that it's coming from that, but really I can't be sure. That's one of the problems for me really.

Let me tell you that I am a rare case I guess according to the doctors. I have been scanned a billion times as a child trying to determine if I had pkd. Every scan turned out negative, at 21 almost 22 I was given the diagnosis while I was hospitalized again.

I never really had symptoms as a child but since I have turned 18 (looking back on it) I have had uti after uti all starting in my kidneys. I had at least 5 with in the past year maybe more. I attributed it coming from different things such as bad habits. To much soda and no water (water tastes funny to me), holding my bladder till I am about to burst, intimacy with a person who doesn't wear underwear and doesn't shower, me not showering properly or often enough, me formerly using IV street drugs, smoking.
Well I changed all that kind of (soda water ratio and smoking is still hard) and I landed myself in the hospital. I am 21 almost 22 and I have 75% Kidney function and next year we will see how I progress.
Its a scary thought knowing my kidneys are going way faster than the sperm donor who gave me pkd. He is 43 and doesnt have a problem other than "sluggish" days.

Something I have been reading lately is people with kidney issues dont consume alot of fluid or are not intended to. I remember as a child I would only drink I little fluid here and there and once a week chug 2 cups of cold water then be on my marry way. Also I hate with a passion salt and grapefruit and other weird things. Maybe thats how I escaped so many problems.

Glad someone else is around my age on here seeking answers

I see, that's quite unfortunate I don't believe I've ever had a UTI and I didn't have to get checked multiple times to find out that I had PKD. I really don't even remember what lead up to getting the scan that found it however. I do remember though that I was 16 when it was discovered. I do have some symptoms but I don't know which (if any) are caused by PKD really. At times I find myself feeling very exhausted, or pain in places like my knees and groin.

I want to encourage both of you to work through diet, exercise, drinking adequate water - put orange slices, or something to flavor it, they have flavor packs for water - I have had remarkable success in reversing my decline. The diet is hard but until I fell off the strict regime in Feb 2014 - vegetarian 50% raw foods - I went from 15 points from a transplant in 2012 to 'normal' function and have maintained that since. I've met other people who did this with the same results; the tough part my nephrologist says is scientifically validating it but he has changed up his treatment plan based on my dramatic improvement. You have a long time to live with this so do it well! And, you have this place to deal with all the associated emotional crap that comes from living with it. So you will be good to go!

Tryn2bpositive - could you please explain your regime a bit more? I am curious to learn (and eager to try!). Thanks, Emma

Sorry I missed the question. I don't know when it started to affect me. The only effect I've had so far is lack of energy and needing to sleep longer at night. I've also noticed lately I feel like I look pregnant but couldn't be at age 64. My sister says I don't because I wear the proper type of clothes that hide it. I guess I was in my late 30's when I noticed my blood pressure went up. It could have been higher before that but I didn't notice. When I asked my doctor he said "Of course you have high blood pressure, you have kidney disease." Luckily I changed doctors and she put me on medication right away. But still I think it probably did some damage.

I've had so much stress in my life that it's hard to separate. My husband passed away 2 years ago. My doctor has been able to cut me off 3 BP meds cause it was going too low. I loved my husband but he did cause stress. I also have an autistic 35 year old son and he causes stress. So I have no idea what's what and maybe that's better. I can't blame everything on PKD.

I'm apparently 18 mos to 2 years away from dialysis now - and scared.

I was diagnosed at 24 (I'm not about to be 31) after a UTI turned into a bladder infection and then to a blood infection which nearly killed me. My cysts are clearly visible via ultrasound, but are not large enough to be felt by my doctor on my back.
PKD has been rampant in my family, basically causing the death of several family members well before their time, they all had a very difficult experience with the disease (double nephrectomy, transplants, dialysis, heart attacks).

Personally, my symptoms are occasional fatigue, headaches, UTIs and aches in my back where my kidneys are from time to time. However, I drink tons of water and exercise vigorously regularly (running, dance, biking, swimming, - you name it, i do it), no smoking, no drinking - and as a result, based on my latest nephrology appointment, my kidney function is virtually 100%.

The disease is different for everyone, we progress differently based on a variety of factors - hereditary, lifestyle, etc.
Since yours was diagnosed early, you have the capability to slow its progression with a healthy lifestyle - water and exercise are a MUST.

Good luck :)

As far as I know no one else in my family was diagnosed with PKD, which is something that I found quite odd. I have issues like fatigue, headaches(quite often) back pain, abdominal pain, and joint pain. I'm not sure what is causing these things though, besides my PKD I also have back problems as well such as scoliosis. Also I was told I have a cyst in my brain somewhere but the doctor I seen said that it's not dangerous., I don't know how accurate that is but I hope it's nothing serious.

Hello!
I was diagnosed when I was 16. My doctors were constantly checking me and doing blood work yearly to check my functioning and blood pressure(unfortunately no matter how healthy you are the high blood pressure is a symptom) because they knew my dad had PKD. Once my blood pressure increased and they noticed a lot of protein in my urine, I had an ultrasound which confirmed the cysts. When I was in high school, I was not allowed to play any contact sports. Now I have to watch my sodium intake and I am on blood pressure medication. The first blood pressure medication I was prescribed at 16 I actually became allergic to in my early 20's. I was taking lisinopril. I then got switched to lasartaan (cozar). I do get dizzy sometimes. I also do get really horrible pains in my back randomly and doctors believe it is a cyst bursting. I am now 27 and I have a one year old son. My creatinine level has always been good until recently it has gone up. My doctor's tell me just stay healthy, drink 100oz of water and avoid salt. My doctor has told me studies have shown that water decreases the cyst size. My doctor's always tell me I am one of the youngest patients they have with the disease and that I shouldn't have to see dialysis in my lifetime...so hopefully they are right. Just continue doing what you are doing, it sounds like you are making lots of healthy choices! Also if you don't already, see if you can get an ultra sound of your kidneys every 1-3 years just so your doctor can monitor the size of your kidneys and cysts!

Hello :) I'm also in my twenties and struggling with PKD. I was diagnosed when I was born but they didn't start treating me for it until I was 3. They say a lot about how things are going to effect you when your older but I can't necessarily believe that fully. I'm the only one in my family that has it...(or at least diagnosed with)

What makes you not believe that it will effect you when you are older Jenna?

Since a lot of things have affected me already with this disease, it seems like I am getting a lot of things that isn't "supposed" to happen later on. I have already been on dialysis and had a transplant. On top of that I went through a rejection period a couple years back.
Then again it effects everyone differently, new things could happen sooner rather than later for others.