Have PKD questions and new to board!!

[lbehel]

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

[diane62]

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!!

[feelbad]

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

[lbehel]

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

[PKDtoo]

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!