Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Hey everyone!!
I am mad a bout my clinic I go to, it is free. I go there because I have no income of any kind. I want to say that I am grateful for finding any help. But sometimes they make me mad because I usually see a different doctor everytime I go, I can't seem to get them to tell me what is going on with my disease. The things I know I found out myself. But I am still pretty clueless on a lot of things like how many cysts I have, all the things I should avoid eating,etc.
But the thing that really makes me mad, is that I need to get blood work done at the hospital, and the clinic was suppose to mail me a paper with what type of tests I need done so I can take it with me to give the people at the hospital. I been waiting a month!!! I called once all ready and was told that they would look into it. I need those tests before next month because I have an appointment next month at the clinic. Does anybody else have problems like this? Because I am going crazy.
I am mad a bout my clinic I go to, it is free. I go there because I have no income of any kind. I want to say that I am grateful for finding any help. But sometimes they make me mad because I usually see a different doctor everytime I go, I can't seem to get them to tell me what is going on with my disease. The things I know I found out myself. But I am still pretty clueless on a lot of things like how many cysts I have, all the things I should avoid eating,etc.
But the thing that really makes me mad, is that I need to get blood work done at the hospital, and the clinic was suppose to mail me a paper with what type of tests I need done so I can take it with me to give the people at the hospital. I been waiting a month!!! I called once all ready and was told that they would look into it. I need those tests before next month because I have an appointment next month at the clinic. Does anybody else have problems like this? Because I am going crazy.
It doesn't matter how many cysts you have. You either have them or you don't. The radiologists don't have the time or the abililty to count up all the cysts in a polycystic kidney or liver; there are hundreds if not thousands of them. The only time anyone counts cysts, and even then it's probably a general estimation, is for clinical trials. Once the number of cysts in your kidneys exceed the number needed for a clinical diagnosis or a reasonable number for a radiologist to count, the usual notation on the radiology report is "too numerous to count" or "innumerable". I have NEVER known how many cysts I've had; the number is completely irrelevant to my treatment.
As for diet, unless your doctor(s) have told you to specifically avoid certain food groups or nutrients, then you have no food restrictions and can generally eat whatever you please. Obviously common sense applies, low sodium, low fat, plenty of fresh water, lots of fresh fruits and vegetables, whole grains, protein is a deck of cards, not a 32 ounce steak, etc. Your labs will dictate any dietary restrictions.
Doctors aren't the best people to ask about diet; renal dieticians are better versed in diets and kidney disease. The next time you see any of the doctors, ask for referral to a renal dietician. You can then sit down with the renal dietician and based on your labs, develop a healty eating plan.
I know it's frustrating seeing a different doctor each time you go to the clinic, but many clinics and hospitals operate this way, not only the free ones, but teaching hospitals as well. In addition, not all nephrologists are experts on PKD, which makes it even more challenging for us. Thus we need to learn more about our own disease, keep copies of our own labs and radiology report and become our own advocates. It can be a challenge and a bit more work, but no one has our best interest at heart than we do.
Then when you do have an appointment, once the doctor is in the room, take you chair and place it in front of the door so the doctor can't leave without going through or over you, and ask him/her about what your labs mean and get answers. Write down your questions and concerns, be specific and get the answers you need.
Now, as for those labs, call or stop by the clinic and ask for a copy of your lab slip. Chances are someone forgot in the rush of things to send it to you or give it to you at your last appointment. I'm sure it wasn't intentional; it just got lost in the shuffle. Go get a copy and get your labs and tests done in time for your next appointment.
Gentle hugs and best wishes.