Hi. I am new on this board and am very scared. My 19 year old daughter was having severe abdominal pain while at college a few weeks ago. Went to ER and they did a CT scan. Found 1 cyst on her liver, 1 on her ovary and multiple cysts on both kidneys. Went to see nephrologist and he said polycystic kidney disease. He did an ultrasound off the record of myself and my husband and my husband has cysts on his kidneys also. The Dr. does not want to put that as a diagnosis for my daughter because of her age and insurance purposes so she is to go back in a year and have another ultrasound, bloodwork, etc. All her bloodwork came back normal. My husband is going to get a complete physical in a few weeks. Two years ago when he had a physical everything was fine. We had NO idea of this being in his family. Everyone has lived to be in their 70s and 80s and died other other reasons. I know also thay my 15 year old son could also have it but the Dr. said not to check him unless he has symptoms.

Neither of them has high blood pressure. My daughter has always had cysts come and go on her ovaries and always had very painful periods. Is this related to the PKD? I forgot to ask the Dr. about that when we were in his office. I am concerned the cyst could be damaging her ovaries.

Because all other family members never showed symptoms does that mean my husband and daughter may never have problems with it?? I have just been in shock for 2 weeks now and don't like all the things I have read on the disease.

Any suggestions or help would be greatly appreciated!!

Lynda

my husband and 16 yr old step daughter also have PKD. they were diagnosed about 2 yrs ago. They are both doing well. I have a bp monitor at home and check their bp regularly. my husband switched to decaffienated drinks and I try to convince him to eat right and exercise. he comes from a very healthy family who all have lived into their 70's and 80's. I strongly believe that my husband will live a long normal and healthy life.

Good luck!!

the big thing about PKD is it kind of sneaks in on you and you donot have a clue unless in most cases,the indicative "polyglobs"(my word) are actually found upon an ultrasound or some other type of testing.your doc has the right idea about not teasting the other child as it could follow him ins wise and cause alot of problems for him down the road if it is Dxed in him.since there really isn't anything you can do about it either,well.we didn't have a flippin clue either that this was actually in my moms side til my then 12 year old son suddenly vomited up alot of blood in school one day.hell of a way to find out that he was actually in liver failure from an off shoot mutated gene that stems from PKD.after that we were told about this being an autosomal dominant disease and that either me or my hubby actually had to have it.well,it turned out to be me,then my sister also found out she had it when she was tested.the biggest problem in actually having this but not knowing it is you assume you have two healthy kidneys since those lab numbers just don't change til the damage to the kidneys reaches a certain magic level.believe it or not,i am 47 right now(found out i had it at age 40)my labs as of two months ago are still all within the norms but if you took one look at my ultrasounds,it would show a totally different picture.they have gotten so very large now that they actually shifted out of my back and are now currently sitting right along side and partially under my freakin ribcage,BUT still great labs.its just sooo freaky.

just an FYI but as you are finding out with your daughter,the cysts can show up in other organs besides just the kidneys and liver.my liver is also affected but i also have two seperate cysts that for some reason just formed inside of my psoas muscle?this muscle runs thru the low back and very close in proximity to the L kidney on that side.wierd.one good thing that i have found upon researching this condition is that it does 'appear' that inpeoplewho have multiple organ involvement like us,the disease doesn't cause renal failure quite as quickly.i am thinking that its more due to the fact that the cysts are more spread out so they don't concentrate as heavily on 'just' the kidneys?just my theory.my moms cousins all ONLY have strictly kidney involvement and they are needing tx much much sooner than us so it does appear that this is playing out this way too.i just cannot believe what my kidneys actually look like and that my labs are still all within ranges and not even the high end of normal,right in the middle of normal.just kind of blows my mind really.

since there really isn't anything that truely stops the progression of this crap,the best things to do really are to keep an eye on the BPs(how old is your hubby and how are his labs and cystic development)and of course watch your salt intake and stay away from phosphates?pop is a biggie for phosphates.if you have any other questions just hollar,K?

one thing here that i don't know if you have been told or not yet but people who have PKD also are for some reason also born with just naturally weaker vessel walls too.this just increases the risk for aneurysm?i was found with one in my brain two years ago that thankfully was able to be coiled(the less risky way of treating them) just wanted you to be aware of that since some docs forget to tell you and you DO need to be aware of this.take care,Marcia

Hi. Thanks for the replies and info. My daughter and husband both have low BP. My husband is 45 and has cysts on both kidneys. He is very healthy, a body builder, watches what he eats, etc. His kidneys are also enlarged but I don't know how much. He is scheduled for a complete physical next week to have bloodwork and all done. We were quite shocked at all this because nobody in his family has ever had ANY kind of kidney problems. We don't even know what side of the family it came from because his parents are both deceased and lived to be 70 dying of other causes.

Yes, the Dr. did mention about weak blood vessels. Is there a way to check for that and does everyone that has PKD have it?

So because my daughter has a cyst on her liver and one on her ovary, she may not lose her kidney function as soon? That is very interesting. I haven't read that anywhere in my searches on the net.

I read where 50% of people with the disease go into kidney failure by age 60 and 60% by age 70. Some never have any problems and die from unrelated causes. That must be the case in my husband's family because all his family members on both sides lives l-o-n-g lives and died of other things.

About the weak arteries, can that cause heart disease/strokes??

Thanks again!
Lynda

Hi Linda, Marcia, and Diane,

My 18 year old daughter was diagnosed with pkd about a year ago. We didn't know of any family history. Then, my husband was diagnosed a few months later. So far both of them are healthy and well, and their creatinine and other lab values are all normal. I have to admit that I had a very difficult time dealing with this whole thing, so when I saw all of your posts, I had to respond. Both my husband and my daughter had MRI/MRA's to make sure they do not have an aneurism. Thankfully, they don't.

It seems that for now all we can do is watch blood pressure, cut back sodium and caffeine, exercise and eat well, and pray for a treatment!!

Although I am sorry that anyone has to deal with this, I feel comfort in knowing that I am not alone. Thank you!

hi PKD,i am glad they know,just becasue there are things you can do to just maintain better kidney function ya know?unfortuently there really isn't anything you can realistically do as far as a cure goes.this disease is actually so very common,but like our stories show,you really don;t know you even have it til you just happen to get scanned for something else.the labs just don;t change til the very real damage hits some basic level.as of my last labs,about nov of 07,my kidney and liver functions are STILL all within the norms.it just freaks me out tho,really.my kidneys are just so freaking huge.

the MRI/MRA was a very good idea.i went thru the aneurysm thing in 05 and just had my follow up angio this past nov,and everything is still clear so now i only have to have MRA again once a year.the angios just cause me alot of other problems becasue of spinal cord injury i also have.so the MRA is a good thing for me.it sounds like you are doing all the right things here with what you have cut out of their diets.just one thing tho i didn;t see is phosphates?pop is the number one thing that carries alot of phosphates.its just not good for the kidneys for some reason.it was just one of the things my sons kidney team at the hosp had told us right after he was Dxed with it.the things to avoid list?

the ultrasound really is the very best way to monitor PKD since they can also check the real blood flow thru the kidneys and the liver using that doppler tool they have?i have this done once a year.your hubby would be much more inclined to be needing this on a once a year basis.your daughter luckily realistically has a very long way to go here as far as any real kidney problems developing from just the PKD.my 21 year old son has just a few globs here and there which they said isn't a huge deal for him.his liver just took the biggest hit with that mutated gene crap.he also had an MRI done on his brain a couple years ago and things looked okay there.so that was good,really good.all you can do is just really eat right and watch the BPs especially in your hubby right now.just the age factor here(and just more time for cystic development to have taken place over time) presents a higher risk of problems.how old is he?please let me know what you find out about his physical and hopefuly they already did or will do the US on him.take care,marcia

Hi Marcia,
Thanks so much for responding to my post. It means a lot to be able to communicate with others who are dealing with this!

To answer your question, my husband is 49. He was diagnosed a few months ago. His creatinine is currently around 1.2. He recently started in a study called TEMPO, which is a clinical trial of a drug called Tolvaptan, which may help slow/stop the progression of PKD. (It worked great for mice!) Two thirds of the participants in the study get Tolvaptan, and one third get a placebo. My husband definitely got the Tolvaptan (we know because it makes you drink and urinate LOTS). Once you are in the trial, they monitor your blood work and urine every few months, and will do an MRI of the kidneys once a year, to see if there is any change in size.

If Tolvaptan is found to be effective, and gets FDA approval, we won't have to worry so much about our kids futures, at least as far as PKD is concerned!

Anyway, I hope you and your son remain well. Stay in touch and let me know if I can help you at all.