I know. Sometimes I think that I can't cope with any ailments on top of all that goes with the PKD (and there are a lot of knock-on effects which might not seem to be connected but are). Obviously, we can have other illnesses, just like the general population, but it just seems like a step too far sometimes. At the moment I have hayfever and the only medication I can take is the one that doesn't work. This may seem trivial but it wears me down when piled on everything else.

I saw a dietitian today and really learned nothing. She told me I could change some of my dietary habits, but it wouldn't improve my function.
Why would a doctor refer you to a dietitian if diet plays no part in PKD? She told me to restrict my sodium, watch my potassium and phosphorus intake, but nothing would change my lab reports.
Does anyone have any dietary advice?

Live2tell,

That sounds like a pretty useless dietician. I have reduced the amount of potassium in my diet and my serum potassium figure fell: a direct result. The same happened with my phosphorous. I have kept my sodium low for years and this is reflected in the fact that I still take only the very minimum dose of BP medication. It's so low that nobody else takes this dose and the pharmacist has to order it specially. None of this may improve function but it can limit damage being done elsewhere in the body, reduce itching if you have that problem and make you feel better. I think her attitude is poor. Which things do your lab reports indicate need attention?

My labs look great other then phosphorus being slightly elevated and creattinne going from 2.44 to 3.1 over a few months.

There is some evidence that restricted protein intake can reduce the rate of decline in eGfr. In addition, protein foods are generally high in phosphorous. You may find this useful:

http://apjcn.nhri.org.tw/server/info/books-phds/books/foodfacts/html/data/data5f.html

If you eat a high protein meal prior to blood tests and are somewhat dehydrated, this will put your creatinine level up.

Found this today, very interesting (get a new dietician, Live2tell). Here is the understandable part. I'll copy the link after. I always thought my sister was crazy for saying that lemons are alkaline and good for kidneys; turns out she's right!!
"Food intake can affect the bodys acidbase balance through supply of acid precursors (i.e., noncarbonic acids, such as sulfuric acid) or base precursors (i.e., alkali salts from organic acids [OAs], such as citrate and bicarbonate). In general, meat, fish, cheese, grain products, and rice are relatively strong net acidifying foods, which are also high in phosphate, whereas fruit (apples, peaches, and raisins), legumes, vegetables (spinach and cauliflower), and potatoes are relatively strong net alkalinizing foods, and foods low in acid, such as potassium, are potentially renal-protective. Our contemporary Western diets are shifting from relatively alkalinizing toward more acidifying. The consequence of high DAL is a state of metabolic acidosis, which is a common complication of advanced CKD.14 Our findings suggest that high DAL plays a role in the progression of kidney disease. They reinforce the findings of earlier studies that have shown beneficial effects of alkali supplementation in slowing the progression of kidney disease7,8 and studies documenting the association of metabolic acidosis with CKD progression.15,16

We noted an association of DAL and progression to ESRD for participants with albuminuria. Our findings are in accordance with previous studies that have shown high consumption of meat food groups (i.e., each serving per day greater intake of the sum of red meat, processed meat, poultry, and fish) to be positively associated with albuminuria.17,18 By contrast, a dietary pattern characterized by high consumption of fruits and vegetables (i.e., each serving per day greater intake of the sum of fruits, fruit juice, vegetables, nuts, and legumes) was inversely associated with albuminuria. Because albuminuria is a major risk factor for ESRD progression, our data suggest that higher DAL may lead to kidney injury, which may portend progression to ESRD."
http://jasn.asnjournals.org/content/early/2015/02/11/ASN.2014040332.full

Thanks for all the information. I'm learning so much from your answers. BTW Lhanley, I for some strange reason have been craving warm lemon water. I've never been much on lemon so I found it strange, funny you mentioned lemons.

Thanks for this Lhanley. You might like this:

http://www.pkdiet.com/pages/diet/dietpkd.htm

The only trouble is, once your potassium levels start to rise (with declining function), it's largely the alkaline foods that have to go. That leaves nothing to eat at all!

Chewitt - and then we can finally lose that last five pounds!

Hey Live2 -- It's been years for me in Stage IV... (I don't remember exactly, but from GFR 42 to 17 has been about 8 years). I do seem to be progressing faster now (Creatinine 4.1 and GFR 17) vs. in the past. I've heard it's like a set of tires - at first they don't wear down as fast, but the more bald they get, they actually wear down even faster because each revolution doesn't 'go as far'. For the kidneys, if they're already doing extra work, the worse off they get, the remaining 'working bits' have to do even more work than before, wearing the good parts out faster.

Overall - not too shabby. I do have light pain most of the time if I stop and think about it, but it's what I'd call "non-disruptive" pain. It doesn't keep me from concentrating at work, etc... Just kind of there. (Cyst ruptures are the exception to this pain rule. I've had blood in urine maybe 15 times over the years but only a couple have come with bad pain)

Bending/twisting certain ways is a no-go for me now. Kidneys around 20cm each, and I think maybe they are starting to encroach on other organs (i.e. stomach).

Overall, for me the symptoms have been way better than described.

Double-nephrectomy and simultaneous starting of hemo on the other hand, might be a little less fun. But it's part of the plan. It's all good...

Thanks for the update I LikeBacon. This is my second go at replying, as the "send" button wouldn't work last time. As you say, bending and twisting are definitely to be avoided, if indeed those actions are even possible with an enormous abdomen! I think we become good at adapting with this disease - we have no choice. Good luck with the plan.

GFR 27. I am frequently urinating at night and it is really screwing up my sleep cycle and energy level. From what I've read about Stage 4, this is to be expected. Is anyone else experiencing this, and if so, any suggestions?

Never mind a feature of stage 4 (my eGrfr is 28), I've been getting up during the night for years. I think the frequency of nocturnal bathroom trips has increased - at least two and sometimes four! As you say, it's very disruptive to sleep and causes day time tiredness. I used to avoid drinking anything after about 8pm but now I'm just too thirsty for that so I've resingned myself to the disturbed sleep. I'm thirsty each time I wake, but I just have a sip of water and try to go back to sleep. I'm pretty sure more comes out than goes in! I don't think there is any solution to this. My husband often says as we put out the light, "See you in the morning and several times in between".

I am 42 years old been diagnosed with PKD for almost 3 years now. Kidney function is 20%. I went to Dr today but saw his PA. Less just say when I left she had me crying. She asked was I tired? YES all the time. She asked was I nauseous or vomiting? YES most of time. She asked did I have back pain? I said YES and it has this pulsating feeling to it. She then told me I must be depressed cause ppl with 20% kidney function don't feel as bad as I do?? She never her of back pain like that. I really felt like I was crazy by end. Am I only person that feels this bad?? Is this in my head?? I feel like I'm losing my mind. I am not depressed at all. I've also gained about 50lbs that I can't get off?? Any advice would be greatly appreciated.

Hi Blessed74,
First of all welcome to the group. I hope you'll feel a little better after exploring some of the posts here. No, this is not all in your head. My function is 28% and my consultant says I can can expect to experience the fatigue and pain that you describe. Some people have nausea, too, for various reasons. I have everything that you list, too. Over the years, I've seen that a number of people have doctors who believe PKD does not cause pain. They are very wrong. Your kidney function is at the level which requires you to start thinking about renal replace therapy options. Refuse to see your doctor's PA again. Ask to see your doctor, or see another doctor. You deserve better. You may also benefit from seeing a renal dietician. Let us know how things go.