At 30% function, I'm borderline stage 3/4 so would also be interested in hearing more about managing stage 4. I read about a man who took six years to go from 20% to 10% function. His doctors predicted a much faster decline. Mine are suggesting that I can expect a decline rate of around 6% per year now, if I follow the trend of my graph recently, so we'll see.

I recently went to an education class on dialysis choices and the instructor said they see anywhere from months to years. She mentioned one patient that was prepped for dialysis and after 5 years still hasn't needed it. It make me wonder about the stories of others in stage 4

I'm at stage 4. My GFR is 15 and creatinine is 2.4. I feel very, very tired 24/7. Foggy brained, itchy, drowsiness. I have constant pain.

Unfortunately, no one seems to concerned about my condition, so I just exist each day in this state. I figure at some point, sometimes attention grabbing will happen and they'll stop telling me that PKD doesn't cause pain and 15 GFR is finw, they don't even begin to talk about transplant until I'm 6-10 GFR. I don't know what to do next and honestly, I'm so tired that I just let it happen.

Thanks for the reply. I understand the pain and some of the tiredness I was having a lot of pain especially when cyst were bursting, but mainly daily pain from my kidneys I used to drink at least 2-3 sodas a day and was bad about grabbing caffeine as soon as I woke up. I cut back on sodas and eliminates all dark colas. It took about 3 weeks, but the daily pain did improve. My kidneys don't feel as achy as before and this is the only thing I changed.
As far as being tired I have had thyroid issues for years so I've learned to deal with always having some sort of energy issue. I just keep reminding myself that this is what I have to work with and try and find something good in each day. I wish you the best, I know it's hard but keep trying different things and maybe you'll find something that works for you.

Careful pacing has a great aprt to play in the management of pain and fatigue. The skill is in taking time to rest well before you reach the point of no return.

Live2tell, well done in giving up those fizzy drinks. Remember to drink plenty of water now.

I have been told that discussions about renal replacement therapy begin once an eGfr of 20 is reached. If dialysis is planned, fistulas etc need to be put in place 6 months before they will be needed. By the time your eGfr is 6-10 you should be actually beggining treatment or having your transplant. There is also treatment available for itching. Can you find someone to be your advocate if you don't have the energy to fight for yourself? Perhaps you need to see another doctor Likethata.

I've been in Stage 4 for several years. Creatinine recently jumped from 2.8 to 3.1. so I have to get rechecked in a month - hoping for an anomaly, but, I have no pain, sometimes discomfort after riding in a car for several hours. Kidneys at 15 and 16 centimeters (don't know the volume). My nephrologists do not speak in percentages. If I had a different kidney disorder, I'd be on the transplant list, strictly because of my GRF, however, the rest of my labs are okay-ish. Because my Pth is getting out of wack, I must take Vitamin D. If it's hot outside, I have to take it easy - just cannot handle heat. If it's cold, I have twice the energy. My only real trouble now is my squished stomach and the attractive pregnant look. My family has type II and nobody has lived long enough to go on dialysis or get a transplant (strokes - would not take their BP meds). I'm 65.
Likethatandthat - How are your phosphorous, potassium, calcium, Pth, Vit D, anemia marker levels? Those can be treated. Are you on the EPO shot yet? My neph said itching is caused by too much phosphorous and a phosphorous binder can help with that (the cheap way, if your calcium is normal, is Tums).
Having a nephrologist with knowledge of PKD is really important.

My creatinine just jumped from 2.44 to 3.1 since February
They want to recheck it in a month. I'm so confused. I feel good other then getting tired easily, but I always recover. My levels such as iron, vitamins and potassium and so on are all at somewhat normal range. I you have any advise I'd appreciate it.

LHanly, I'm totally opposite on the heat and cold thing. If I get even the slightest bit cold I tense up and when it's warm at I relax.

Live2tell - they probably hope that the jump was an anomaly and not a sign of rapid failure. This has happened to me. As you know, creatinine is simply a measurement of un-eliminated muscle by- product, so, eating a big steak the day before a lab test can skew the results. So can lifting weights, or, not being adequately hydrated. I hope your next results (and mine!) are better. How to cope? I don't think about it. What's the point? Right now, there's nothing to prepare for (fistulas, donors etc) so just take it easy and live life!!! BTW, one of my docs said he had twins with PKD and one made it to creatinine of 15 before needing dialysis.

I just had blood tests and my eGfr is at 29 now. It's inching down a little each time. My minerals are fine but last time my potassium was a bit high. I reduced the amount of potassium rich food I was eating (turns out my diet was full of potassium) and now it's normal. I have been taking iron for about 10 weeks and my iron stores have improved but my Haemoglobin is largely unchanged. This fits the pattern of anaemia of chronic disease but my consultant maintains that unlike with other kidney diseases, this doesn't happen in PKD. I'll see what he says next week.

As for temperature, I don't function well in the heat and tense up when it's cold, making pain worse. I basically operate in a narrow range of temperatures; good thing I live in England!

Good luck for your blood checks next month Live2tell and Lhanly.

Chewitt, Re-iron and hemoglobin, can you explain more about what exactly do they mean by not fitting the pattern?

Usually, people with ESRD show anaemia because their damaged kidneys don't make enough erythropoietin (EPO). Interestingly, the degree of anaemia is significantly lower in APDKD patients with ESRD supposedly because EPO production is less affected. There is a recent study of how this happens:

http://www.jci.org/articles/view/114280/pdf/render

Anaemia of chronic disease is common in people with conditions such as rheumatoid arthritis, cancer and kidney disease (not PKD apparently because of the EPO thing). The body has enough iron but does not make it available to red blood cells when high levels of inflammation are detected because iron feeds bacteria and cancer cells. Of course, not all inflammation is caused by bacteria or cancer.

Quite often I have diffuse pain in my abdomen and I have read that this stems from the massively enlarged organs, particularly the liver as it expands, irritating the peritoneum (abdominal lining). This then causes pain and soreness. Surely this inflammation might explain my normal iron/low Hb situation. I think sometimes doctors focus on their one area of interest eg the kidneys and do not take the whole picture into consideration before making their proclamations. Anyway, it seems in anaemia of chronic disease the Hb stays at a lowish but not dramatically low level so I guess I can live with that. I just like to know what's going on. Also, iron supplement are not recommended in these situations, since low iron is not the problem and adding iron might result in iron levels becoming too high. Mine are far from being too high but this could make for an interesting discussion with my consultant next week.

Chewitt - thanks for the link and thank goodness for abstracts and discussion so the layman can make some sense of the paper.! My neph said it doesn't matter if I take iron because my body can't utilize it (to make red blood cells), but, as long as my levels aren't high, it won't hurt me. Since my iron is low and my iron binding capacity is even lower, I'll keep taking the pills because I want to see if my hair stops thinning out!

My hair has been falling out by the bucket load for nearly three months. I'm hoping it will stop soon. Luckily I started with thick hair so it hasn't yet been as devastating as it might have been.

We can live with a lot, but losing hair? It's like adding insult to injury!