Polycystic Kidney Disease (PKD) Support Group

From all of your posts, it appears that you really need to educate yourself with regard to PKD. Visit the PKD Foundation website: http://www.pkdcure.org/, read all you can and then request a PKD info packet. Order one for your doctor too! You can also visit the National Kidney Foundation Website: http://www.kidney.org/ for information.

If it were me, I'd ask the physician (nicely but firmly) to be referred to a nephrologist who specializes in pre- transplant PKD. You need to be proactive with your care. Your health is too precious to risk with a physician who doesn't have the knowledge to take appropriate care of you (if that indeed is the case).

Good luck as you continue on your PKD journey.

I have visited many, many PKD information sites in the last 2 years nine months, and read all that I can. I'm in the UK so can't really request information packs from US charities! I'm interested in peoples' personal experiences, which is why I asked for input here. My kidney function is regarded as normal, so I don't see a nephrologist. He told me he doesn't need to see me again until my function falls below 50%. I've seen several GPs, and none knows very much at all about PKD. I'm doing the best I can to be proactive with my care, within the confines of the NHS. I shall continue in my search for information, and welcome any one elses's experiences with this.

Chewitt,
You can request a package from the PKD Foundation; they send information around the world and actually have affiliated 'chapters' in France, Japan and Canada. And if they won't send you information directly, most of their material is available for download off their website as PDF files (and if more up-to-date than their written materials).

Your GP seems dreadfull uneducated about kidney disease in general and PKD in particular. There really is nothing magical about PKD, it's a kidney disease with some unique characteristics:

PKD kidneys grow whereas most diseased kidney shrink

PKD kidneys can hurt regardless of size or the presence of infection or not whereas most diseased kidneys only hurt when infected

PKD kidneys continue to produce urine even after kidney failure whereas most diseased kidney cease production of urine when they fail

PKD has extensive extra-renal complications due to the genetic nature of the disease whereas most kidney diseases do not

Otherwise PKD is a kidney disease, a life-threatening one (especially considering many of the extra-renal complications). Your GP, however, seems to think that PKD imbues you with some special powers or unique knowledge and seesm to have forgotten everthing she learned in medical school about kidney disease in general. It is her responsibility to consult with specialists when she has a question, not to have you try to coordinate your care and seek out the answers to some very basic questions.

Wanting to understand your disease and learn what you can about it is understandable and a very pro-active. Get copies of your labs and imaging studies and learn what they mean, and know exactly what your fucntion is and figure out exactly when you hit that 50% mark so you can see a specialist (don't count on your doctor knowing when that is; I'm not so confident she would. BTW, NHS has a policy that you should be seen by a nephrologist as soon as your GFR goes below 60, not 50...they make a huge deal about it in the media about a year ago and it was covered world wide). So ask away and we'll answer what we can.

But make your doctor do her job as well. She shouldn't get a free pass just because not all her patients have PKD. She's a doctor and certainly she learned something in medical school. If not, she needs to be reported to the appropriate authorities and sent back for remedial training or removed from practice all together.

As for your question....Lymphocytes are one of the many types of white blood cells and generally indicate an infection of some sort, past or present. Overall white blood count and then what specific type of white blood cells (neutrophils, lymphocytes, etc.) that are elevated are used to determine what type of infection or disease may be present and what type of action should be taken. Changes in lymphocytes has nothing to do with PKD...and waiting 3 months to check to see if an infection or other problem is still present seems to be a ridicuously long period of time.

Best wishes,
Ruth

hi, glad ya doin ok.been readin ya post..do you see any one at hospital 4 pkd? from bein diagnosed at 18 i visited a nephrologist every 18 months to start then 12, 6, now 3 and a ugologist every 6 months.even if you have normal function at the min they keep a close eye on every thing.when i was pregnant my kidneys stopped workin, i had no pain at that time i just felt extremely ill but couldnt explain why.its hard to explain to a normal gp how ya feel cos we look normal, and its amazin how one day were ok the next were not. ask to be refered , they prob wont do any thing any diff from ya gp at this stage but they know wot to look 4 xxxxx

I don't see a consultant, Lynne, as after the initial diagnosis he said he doesn't need to see me until function falls below 50% (I'm some way off that). My GP has communicated with him once, but he assured her that he doesn't need to see me, so she has accepted that. She monitors me (if I remind her), and I check my own BP. Apart from that, I just get on with things. Since there's nothing really that a consultant could do differently, I guess there's little point in seeing one at this stage. Thanks for your reply.