Polycystic Kidney Disease (PKD) Support Group

I seem to notice a slight, no, a GREAT deal of procrastination on your part. No worries though, I was very similar until I found out.

I was diagnosed 3 years ago after I pissed blood. After 2 months of weekly visits to the hospital, my nephrologist says your kidneys are OK, see you in a few months. I've had 24 hour urine collections, ultrasound, MRI, CT, renal scan, and x-rays. It was my mother who got me write down all appointements and with who, get all the information I can collect and not be afraid to ask questions to the doctor (my mother is a breast cancer survivor).

I asked the medical records division of my hospital for a copy of my ultrasound. They said, "Sure, OK." After a few minutes they gave me a CD. I'm not sure your hospital would have this service but it is worth a try.

I don't know what those test you had were about, but I know this; for PKD the main tests are blood and urine. Hemoglobin, creatine clearance, sodium, and protein need to be in acceptable ranges.

Not eating is not acceptable either. The body needs a certain amount of salt and protein. More water is also needed to flush the kidneys. If you don't like the taste of just drinking water, make tea. Actually, drinking hot or warm liquids is better for the body and also helps boost your metabolism. Beware too much caffeine.

Are you sure you don't have a kidney stone? I had 1 major and 2 minor stones, that had consistant pain until it tried to leave the kidney which causes major pain.

If I can help it, I don't take pain killers. How can you describe a pain to a doctor if its been killed? Less drugs is better.

I have a machine that has a band on it. You wrap a band around your waist(or whereever you want it) and turn on the machine. It shakes the band at a high speed giving you a massage of the area. I think this is the same as your friend hit your back. It causes an increase in blood circulation that temporarily eases pain. You can also use a heating pad to produce the same result.

At least you have a family history, I found out from my geneticist that I'm in the 5%-10% mutation. In fact, I'm a new mutant! I have a gene that they've never seen to beoome PKD. Lucky me!...

I think your "PKD specialist" is stupid! He/She should be asking WHY you feel this way. Some doctor are either lazy or don't have the answers, but pride gets in the way and they'll say, "You're young, don't worry about it." Do you realize how many young lives could have been saved?

I'm 36. By the time I reach 60, I'll need either dialysis or a kidney transplant or I could die. In other words, I'm already past my half life so I'm already part geezer.

I know that I the US, health care sucks. If you want answers for anything you have to go looking for them. You also need to ask the right questions of yourself and your doctors. Everyone plays the victim card for a while, but it will lead you in circles. As for your doctors; ask a 5th opinion, don't like the non-answer. Ask a 6th opinion. I read about someone go to number 12 until a doctor took him seriously and gave concise answers.

Peeing every 15 min is normal if you are drinking more. If not, you may be hurting your kidneys because the pee has to come from somewhere. They may be pulling water from your body. I read it in a biology book that if you drink too much water, the kidney will restrict the amount of water that makes urine. If you drink too little water, fluids are exracted to create a hyper dense urine. The extraction is hard on the kidney and must be worse for PKDers. In other words, the body works 24/7 whether you feed it or not.

Have you heard the expression "hope floats", but you don't see the guy treading water underneath pushing it up! What so silly about asking for help?

I have tried the whole, can I have a copy please. I have forgotten how many places I've been to. There is supposid laws in the us stating that they can't hide imformation from you but, a lot of good that does.

and yes I have kidney stones that have come and gone with out pain.

I know it says to be positive,but I think I've finially come to accept that I shall never know. That my years of feeling great are over, and yes, eating will always be something I will have to force myself to do.

water rat your 36 if you were dianosed 3 years ago, makes you still older then I was when I was when i found out.

my sister was almost 30, my neice is 3, my grandma was about 67, my mom 46. What didn't help with dianosis was the fact at the time my mom, sister, and neice had yet to show symptoms.

because of my issues getting information, and how abruptly my health changed, they refuse to see a doctor.

PS: It's not procratination, it's just the feeling of a mac truck running over me

I have found a lot of reluctance for doctors to except this too ...I guess the only thing to do is try and find a doctor who will listen ...and who will help ...you need to know and you need suport ..kep trying til you find some one ...

I m not sure there is much they can do about this disease. I have seen a urologist he just gave me an estamate of when i would start dialysis 3 to 5 years, that was 2 years ago.
my family doctor keeps me in blood pressure and colestoral meds, and suggest i go back to the urologist. seem like a waste of time and money to me.
so what i do is just live life like nothing is wrong, and visit th restroom alot. hope they find a cure.

I know exactly how you are feeling right now and I went through the same thing. I am now 36 years old and was diagnosed last October, not what I was expecting them to find I actually went in with severe dizziness and back pain an ultrasound found multiple cysts and the kidney enlarged. I had to make several requests for my Primary care physician to refer me out to a specialist for a 2nd opinion, I do recommend to really stand your ground and request this of your doctor and if your current doctor is not helpful to try another doctor. I am now experiencing a gall bladder problem due to my kidney being so large its pressing on my intestines, liver, and gall bladder causing severe pain and my doctor has been very helpful with the understanding I do not want to live on pain meds and gives me very good advise for alternative pain treatment (massage therapy and heat). My right kidney is the problem one and its function is down to 40% right now and my creatine levels are good.

I was a very outgoing active person and now I sleep alot and plan my life around a bathroom. It is very hard to stay hopeful especially on the days when I am in alot of pain. I stay hopeful and positive through very supportive family and friends and educating myself on what is normal and what to expect. I have also started my bucket list, a list of things you want to accomplish before you die, and I have already done one thing and have added 10 but it gives me something to plan for and keeps me positive for the future.

I do hope you feel better soon :)