Polycystic Kidney Disease (PKD) Support Group

Hey water rat ,when you say blood in the urine do you mean only visable blood or micro .I have had micro non stop for at least 8 months just wont go away but the red stuff only happens if you have a stone or a rupture or bag your self dosnt it?

That's what I mean when I say "cranberry juice".

I know what you mean when you say "micro", because I had an appointment with a doctor after I saw blood. My urine sample was clear yet dark in color. She dipped a strip of paper in it and said, "yep, lots of blood."

The stone is totally different. It looked like tomato juice and was combined with pain. All the other times it came out with no pain.

How do you know you have micro unless you are testing for it?

hi ,My doctors have been testing and keep seeing blood with the dip stick and under the microscope saying it originates from the kidney. when I first started to get pain and went to the doctor ,I did not know about this disease or my family history so it took a while to get to the right doctor ,but it was the blood in my urine that was the first thing they found. It led to scans .But as I have said I don’t have a lot of cysts yet so I am wondering about other things they can use to confirm diagnosis with .It seems the Nephrologist would like to see more cysts to be sure .But really what else causes cysts ? And pain on one side and peeing a lot and head aches and raising blood pressure .With a family history of this .If there was another explanation I would be happy but he doesn’t have another explanation. He just ordered more tests and commented on how few cysts I have and said he would see me in two weeks. I was upset because I though it was already diagnosed from the urologist .He hasn’t said its not this and that its is some thing else ,nothing. I have a week now to find out what he says but I have heard of others who have been told nothing and then years later had more cysts and so were diagnosed finally after years of pain and uncertainly.

My urologist diagnosed me also, but PKD is outside of his realm of expertise. He referred me to a nephrologist.

It's a good thing that you don't have more cysts. You almost make it sound like you have post-tramatic stress disorder! "Why!? Why don't I have more?!".

Although my nephrologist accepted my urologist's findings, I still had about 2 months of testing. Then he said, "Your kidney function is normal. See you in 6 months."

Here's a tip: Inform yourself as much a possible about PKD, then ask your nephrologist, "Does this apply to me?". Your nephrologist should be happy too because he won't have to fight you and PKD.

lol .That made me laugh .Its just that I have been to see other doctors before the uroligist ,(I also have ovarian cysts) and they all passed me on ,no one seems willing to just talk to me so I had a fear this guy would do the same ,I know I am early in the disease and that is a really good thing I just wanted him to be straight with me about it ,not fob me off and leave me with no real answers for years .Its good to hear you still had a while to wait ,I am seeing him again next week so hopfully he will just talk to me .

My nephrologist had me on weekly appointments for the 2 months.

I find that when diagnosis is concerned, some doctors are slackers (espcially specialists, makes them feel special). My appointment with my first nephrologist had to be made in two months. I waited the 2 months for a 6 month appointment!! I took the appointment, but no way am I waiting 6 months! That's when I found my current nephrologist.

Just don't let things delay. Supposedly, some breast cancer surgeries could have been minor surguries. Diagnosis or patient delays made it into major surguries. Small part of the breast or the whole thing because of delays.

High blood pressure can be an early warning sign although there are so may reasons for hbp. I work in Diagnostic testing, alot of radiologists do not like diagnosing PKD until a nephrologist has labeled it. I find that interesting. I am curios of the triggers, so far I am the only one in my fmaily I know of that has it.

I was diagnosed after an abdominal ultra sound that showed tiny, cystic kidneys, blood tests that showed high creatanine and BUN and I have high blood pressure and swollen ankles and feet.
I have had, over the years, many kidney infections, including a proteus infection that almost killed me.
My maternal grandfather died of Bright's Disease, which is now known as PKD.
I also have Hepatitis C with abysmal liver levels and a an extremely high viral load, so between these two problems, who knows which is making me sicker.

I seem to have coughing fits, espicially when I lie down at night, I do suffer with bronchitus every winter time, does anyone else get this problem?

I have had lung problems in the last few years ,about the same time I started to have more than just a few bladder infections ...dont know if its linked in any way ..other than some people think Asprin can help cysts form and they tell you to take asprin for lung problems ???