Amosquito
09-16-2004, 11:57 PM
I have Polycystic Kidney Disease (all functions have always been normal, and I've been monitored for over 20 years - it's hereditary from my mother's side), but I actually have more cysts on my liver. They tell me not to worry, but the liver basically is covered in them. As I understand PDK, these cysts are air filled, but take up room in healthy tissue.
I always thought so much about kidney failure in my old age, but never thought that the liver might be affected worse.......anyone have these type of cysts??
I always thought so much about kidney failure in my old age, but never thought that the liver might be affected worse.......anyone have these type of cysts??
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spongebobgamma
09-17-2004, 05:08 PM
I also have polycystic liver and kidney disease. It came from my mothers side. My mother had surgery to drain the big ones to relieve the pain. Her mother also had it. I just found out a few months ago that I have it, I thought I was having gallbladder attacks. I had a ultrasound and ct scan. My liver is full of cysts, kidneys also. Dr is going to monitor it for now, blood tests and scans every year. Part of the problem is Drs don't know alot of information about polycystic liver. Are you having pain?
Amosquito
09-17-2004, 10:17 PM
No, thankfully, I have no symptoms or reduction in kidney function. I knew I *could* have this when my mom was diagnosed, when I was 19. All her children got ultrasounds to find out. I was the only one out of 7 who had it, and each child had a 50% chance!
Ironically, my mom didn't have any cysts on her liver. She died as a result of infection in her dialysis port. Spread through her entire body and she fought hard for 8 weeks in ICU, but died.
My doctors have ALWAYS said, "there is nothing to do now, but make sure you don't have high Blood Pressure, don't overdue it on meats (protein), drink lots of water, and BE IN GOOD PHYSICAL SHAPE. I believe that last one is just so if my kidneys do fail, I'll be in the best physical shape otherwise to do dialysis. I honestly hope I never have to have dialysis. It was not easy, both in the hemo center she went to, and then when she had the home (peri) kind.
Until then, I keep getting Ultrasounds and blood work every couple of years. I used to also have to do a 24 hour urine collection, but my PCP says there's no need for that now. I've seen a renal specialist, who told me to all the same things every other doctor has told me, and to enjoy my life until or if I ever have to deal with failing kidneys.
I should have said, BTW, that my mother was an active alcoholic until age 50, when she finally quit for good. She died at age 68. Her renal docs told her that her drinking had no effect on PKD, but I feel that it must have compromised those kidneys in some way! I don't drink, smoke, rec. drugs, or anything, eat well, and do the above things. Getting into an exercise regime has actually been the hardest part to resolve to :)
Ironically, my mom didn't have any cysts on her liver. She died as a result of infection in her dialysis port. Spread through her entire body and she fought hard for 8 weeks in ICU, but died.
My doctors have ALWAYS said, "there is nothing to do now, but make sure you don't have high Blood Pressure, don't overdue it on meats (protein), drink lots of water, and BE IN GOOD PHYSICAL SHAPE. I believe that last one is just so if my kidneys do fail, I'll be in the best physical shape otherwise to do dialysis. I honestly hope I never have to have dialysis. It was not easy, both in the hemo center she went to, and then when she had the home (peri) kind.
Until then, I keep getting Ultrasounds and blood work every couple of years. I used to also have to do a 24 hour urine collection, but my PCP says there's no need for that now. I've seen a renal specialist, who told me to all the same things every other doctor has told me, and to enjoy my life until or if I ever have to deal with failing kidneys.
I should have said, BTW, that my mother was an active alcoholic until age 50, when she finally quit for good. She died at age 68. Her renal docs told her that her drinking had no effect on PKD, but I feel that it must have compromised those kidneys in some way! I don't drink, smoke, rec. drugs, or anything, eat well, and do the above things. Getting into an exercise regime has actually been the hardest part to resolve to :)
feelbad
09-19-2004, 09:54 AM
Hi, i too have PKD with liver involvement.Didn't even know I had it until the day my then 13 year old son vomited blood at school one day.didn't even know he was sick.He had been having bloody noses on and off for years but these also ran in my husbands family so the pediatrician just said that they were just familial and no major problem.He was also coplaining of stomach aches from time to time but they always seemed to suddenly appear when he needed to do something that he didn't really want to do.Closer to the time that he vomited the blood,he was also getting some rather nasty bruising.But all of these things happened just so spaced out from each other that there really was nothing that threw up any red flags,you know?he also had just had a complete physical in august to play sports and everything was fine.He was cleared,but luckily when it came time to sign up for football,he said that he had changed his mind and really didn't feel like doing it anymore(this probably saved his life).well, after he had vomited the blood that day at school(this was Oct 6th,1999)I took him to see his doc immediately.The first thing that was out of whack was his stomach was rather enlarged.I hadn't noticed it as he always wore rather large roomy T shirts.He also said that his liver and spleen were rather enlargedas well.at that point he said that he wanted us to see a dr friend at childrens hospital who was the head of hemotology/oncology,at this time, both the doc and i were thinking it may be leukemia.well, to make a long,very long story short, we went, he had an ultrasound and tons of blood work and they concluded that my son had some sort of a kidney problem with heavy liver involvement.he wanted him to be seen by a doc from the local university for a liver work up for a pssible transplant! I almost fainted,honest to god.I was not ready to hear that.i had sent what I thought was a normal healthy boy to school that morning and now we are discussing transplants??He was eventually Dxed with portal hyperension(the cysts had grown over the portal vein and had completely blocked any blood flow)His Dx at that time was the PKD with congenital hepatic fibrosis.the GI doc said that he was probably born with the liver destruction that had probably even started when he was still inside the womb.she also said that our whole family needed to have USs done on our kidneys to determine which side of the family this came from.i was really suprised to know that I might possibly have this or my husband.We went in and lo and behold, i had the cysts.My sister was also found to have this as well.It came from my mothers side.We didn't even know that there was a problem as my mom kind of lost track of that side when my grandma passed away.But it turned out that her cousins and aunts seemed to all be in various states with pKD.some had already had transplants(kidney)some were getting ready to have one and some were still having normal labs.I was just shocked at this point.both me and my sister have both kidney and liver invovement but all of my moms relatives have only kidney involvement.My son,we were told,most likely had some strange mutation of a gene that caused the heavy liver involvement.
anyway, at the time of Dx he was already down to only 20% of his liver function left and he ended up getting primary sclerosing cholengitis(the disease that killed the chicago Bears footbal player,walter payton?)and had a very successful liver transplant then on june 7,2000.Just a few months after the actual Dx and vomiting episode.It has been wild.One thing I did find out about with regard to having just kidney involvement vs liver and kidney is that the rate of kidney and liver failure is much lower in people with bth .i think that the fact that the disease is actually kind of 'spread out" over two seperate organs makes it less likely to take its toll on just the one organ,or both kidneys.my liver and both kidneys are heavily affected.but thankfully,so far, my labs have been within the normal ranges.Sorry this got so long but it is sooo nice to be able to communicate with people who are dealing with this same thing.Take care,Marcia
anyway, at the time of Dx he was already down to only 20% of his liver function left and he ended up getting primary sclerosing cholengitis(the disease that killed the chicago Bears footbal player,walter payton?)and had a very successful liver transplant then on june 7,2000.Just a few months after the actual Dx and vomiting episode.It has been wild.One thing I did find out about with regard to having just kidney involvement vs liver and kidney is that the rate of kidney and liver failure is much lower in people with bth .i think that the fact that the disease is actually kind of 'spread out" over two seperate organs makes it less likely to take its toll on just the one organ,or both kidneys.my liver and both kidneys are heavily affected.but thankfully,so far, my labs have been within the normal ranges.Sorry this got so long but it is sooo nice to be able to communicate with people who are dealing with this same thing.Take care,Marcia
spongebobgamma
09-20-2004, 01:42 AM
How scary to have your son go though that. Thank God he is now ok..but what a way to find out. I knew this was in my family but just didn't expect to get it myself. Out of 4 daughters 3 of us have it. I am worried for my children also, they are in their 20's, at what point should they be tested?? I have heard that even though you are born with it it usually doesn't show up until your 30's or 40's, but your son was 13.
feelbad
09-20-2004, 08:59 AM
Hi sponge, Yeh,my sons case is a very rare one.It was caused by some sort of mutated gene,at least that is what we were told.very scarey time.I only have one other child and he was also given an US when we all had to have one.The doc at the hospital said that he had one cyst in each kidney and that the single cyst was not indicative of polycystic type cysts.He was around 16 at the time.They used to say that if you were tested and found not to have it at around 16 that you most likely were okay.Well, the neph that I am seeing,who is one of the best and extremely knowledgeable about PKD said that what they are saying now, is that the cut off age is more around like age thirty.Quite a difference.My Neph also said that when he would Dx a family member with PKD,he used to recommend that all the children and other family members be immediately tested but he was having ;ots of prents calling up and saying that once these kids reach the age where they have to obtain their own insurance, that they were either getting denied insurance completely or were getting riders slapped on anything to do with their kidneys.Well, since their really is not any treatment for this except to keep an eye on the BPs and eat a good healthy diet(things that any normal person should be really doing anyway,unfortunetly,sometimes easier said than done,lol)my neph now tells the parents to NOT have the children tested unless they are showing symptoms.You can check kidney and liver function by just doing the labs anyway,so actually it really is not a big deal in my book.I have not had my oldest son retested and wont unless we absolutely have to as it states in his medical records as of right now that he had an US and did NOT have it.so why mess that up when we really cannot do anything more for him if he actually did finally get it than we are for him right now?i think I would not have your children tested,except just for routine labs,unless they are showing some sort of signs.Why mess up their medical records and risk losing that kidney benefit if you don't have to?I mean, would anything really change if you found out?Probably not.it is just something to think about,you know?if there were some sort of treatment that could be offered to slow the progression or something, I would say well yes,definitely get this Dxed as soon as possible, but considering that nothing would change anyway, why risk it with regard to those wonderful ins companies who are always looking for ways to avoid living up to there responsibilities.This disease,when and if it decides to show itself, generally does not show itself until right around the fourth decade of life.But there are many,many people who have this and don't know it until it is actually found upon autopsy!so who knows.i would just leave well enough alone for now.and when your kids fill out paperwork with regard to any family medical history regarding the kidneys, i would not even mentin it there either.if something suddenly pops up one day,how would the ins co know whether or not you had it and that they had the knowledge?i don't like the idea of lying to anyone,even the ins co,and the doc that i might see.but my god, think of the possibility of possibly going into renel failure and NOT having medical coverage you know?It could cause many many problems for them down the line.i guess the ultimate choice is up to them but tell them to please take into consideration,every possibility of what their decision could lead to.I really am a very honest person,lol.but when it comes to my childrens overall well being and possible major financial problems down the road, you do what you have to to try and do the best possible things for them ,you know?good luck and thanks for posting back,it is sooo nice to be able to discuss this stuff with someone who is dealing with the exact same issues.Marcia