You will need both a urologist and a nephrologist. The urologist is the one who will be doing the surgeries and any aspirations or deroofing or other procedures. There is also the vascular doc who will also be involved.

I hope you can have better luck with the nephrologist than the urologist, but they should work together.

We are lucky my husband has great urology and nephrology teams.

Hi Dixie,

The hospital visit must have been very frustrating indeed. I have had some annoying experiences, too, and have come to expect nothing in order to minimise disappoinmtent. Last time I saw the renal consultant he ordered more blood tests for various things and told me to go to the GP for results. The GP agreed I was anaemic but decided not to treat as it was mild (no dietary advice); she couldn't find the thyroid test results and didn't understand the others so ignored them! It's 6 months between renal clinic visits, which is a long time to wait for blood test results.

The urologist or nephrologist can tell you from the scan results whether you have PKD. I was seen first by a Urologist, who then referred me on to the nephrologist. These were private consultations, though as you say, you need a referral from your GP. I would make an appointment with your GP and ask for a referral letter to be produced for you that day. They don't have to pay, so don't normally hesitate.

I know that this is a difficult time, but be somewhat reassured by your good function 3 months ago. The NHS can move very slowly (I have a pain clinic appoinment tomorrow for which I've waited 6 months!) but you'll get there in the end. As for the renogram, I think it looks at how well the kidney drains, but haven't heard anyone mention it before.

I hope you manage to resolve your problems soon. We're always ready to listen here.

Take care,

Chewitt

Thanks pkdspouse and chewitt. It s reassuring to know that the system can work well. I hope i can eventually get a good team to help me. Its just exhausting pushing it along, isn't it? The GP surgery confirmed yesterday that they had received a letter from the consultant who ordered the CT (undertaken at a private hospital but on the nhs) advising THREE referrals-urologist, nephrologist and neurologist (not sure why I need that one). The renogram is able to measure the function of each kidney independently. I'm having this done because I think they are worried that the atrophic kidney has packed up altogether. If it has, the other kidney is doing a grand job at the moment! The urologist said there would be no point treating the kidney stone in that kidney if its non-functioning anyway.
Chewitt, your GP sounds about as useless as mine! I hope your appointment with the pain clinic goes well.

I don't know about a urologist, maybe that's a guy thing, but any nephrologist with a decent image can determine if you have PKD. Be happy that you made it this long before anything showed up. At your age, function above 60, is quite normal, from what my neph says. I know it's hard not to panic, and rightly so. Cysts will be obvious on a simple ultrasound. On mine it looked like big black circles, and my kidneys took up half the space on either side. If you are lucky, you will be one of the 50% who has very little problems with PKD. The thing is, like Forrest says, PKD is like a box of chocolates, you never know what you're going to get. Keep your blood pressure under control, maybe limit protein and see your doctor regularly. Your GP should refer you to a PKD expert. PKD foundation has a great site with lots of info. and so do the posts on this page. Let us know what happens and good luck.

Hey thanks deedles. Hope you are doing okay and thanks for the advice. My BP is low (always has been) and other tests are all 'normal' at the mo. Its just so frustrating that the GB NHS doesn't seem (well in my admittedly very recent and limited experience) to take pkd seriously. My GP was content to send me away for a year then do a blood test. No dietary advice, nothing. I've spent today searching
for a private consultation with a nephrologist and drawn a blank. Tried the 3 private hospitals in my area (within an hour's radius) and it seems private nephs are few and far between. I did come across a facility in London that offers consultation, any type of scan, blood and urine tests, all results and follow up advice within the same day! Sounds like heaven:)

Hi Dixie,

Where in the UK are you? I might be able to help find a nephrologist. Also, if you have private health insurance, they may be able to give you the names of renal consultants at your nearest hospitals who are already on their books. You may have to find your nearest regional transplant centre, which is where the specilaists hang out. I had to travel 100 miles (one way) to see a liver consultant. With a function of 68% I think the protocol is annual reviews by the GP. Six years post diagnosis and I've never been given any advice about managing the PKD at all from the NHS. Today for the first time I've been offered the opportunity to talk to someone about the ramifications of dealing with chronic pain - but there's a wait of over three months. My life could be in bits by then.

Good luck,

Chewitt

Hi chewitt, thanks for your message. Having to wait months for someone to offer advice about pain relief is disgraceful. I am in the north west. I have tried 4 Spire hospitals (Liverpool, Wirral, Warrington and Manchester) now and only been given the name of one nephrologist who runs private consultations. And he doesn't answer his phone! I have received a urology appointment today to follow up the renogram I am having next Friday. The appointment is the end of March, so about 7 weeks after the renogram. Crazy! I have just had a sort of stand up fisticuffs on the phone with my GP's secretary because he still hasn't done my referral to the nephrologist. I insisted on seeing him today, so I am going in this afternoon. If you could recommend a good nephrologist I am happy to pay privately and travel. I know the protocol is annual reviews because I am very lucky to be in good shape at the moment. I just want to talk to someone who can look at the CT scan and interpret it for me. Many thanks

Nephrology appointment FINALLY booked for 18th Feb. Its a relief just to know its not long now to wait until I can speak to someone who knows what they're talking about. Its remarkable that this pkd is so common, but even experienced GPs don't seem to have much of an understanding.

I know exactly how u feel having been thru the similar experience here in states. If u can get the digital copy of ur test get it. The request copies of evry test so u have ur own set so u always have the info the dr needs to review at each apt. This site has been a great help to me as far as providing info on what tests shd b done, a place to come to freak out about results and then get feedback that calms u. Each case is different. That is the most important thing to remember. Second most important thing to remember is u r ur most important advocate- u have the right to insist the dr order tests, decline tests or treatment- it is tough to do but it is the only way to avoid the mistakes. It can b hard and very scary. We r all here for u

That's good advice. Thanks. I have started a file of my medical history, family history and all these medical appointments. I am asking for copies of referrals and so on, as doctors seem to lose things!!

You do not take ibuprofen for pain, right? Sde effect is cyst development just in case no one has told you.Stay away from Torredol - a non-narcotic painkiller - very bad. that's what my dr thinks turned on my pkd gene!

Hi, thanks for that. I had read that ibuprofen/nsaids is a definite no-no. I have used ibuprofen over the years for headaches, as paracetemol does nothing for me. I never used it regularly, so I hope it didn't do too much damage! Its absolutely crazy that the docs don't give us any of this information - no advice about diet or medication until the harm has been done!

Hi Dixie,

Glad to hear you have an appointment lined up. If you have imaging studies done privately, they should always give you copies for you to keep. I have several discs of MRI scans that I've had along the way, and take them with me to new appointments. NHS scans are a different matter of course!

Have your questions for the nephrologist written down before you go; that way you won't forget anything at what can be a emotional time. My husband came with me subscribing to the theory that two sets of ears would less likely to miss something. It also gave him an opportunity to ask questions.

Have you had the renogram yet? Good luck with that.

Best wishes,

Chewitt

Renogram tomorrow:) I don't think they need the CT scan or anything, they are just testing the throughput of each kidney to determine whether the stone (or the cysts) has caused the left one to give up the ghost altogether. I only got the nephrology appointment sorted out because I told the GP's secretary I was coming into the surgery and blocking the door until he did the referral! Was told to go straight in, saw the GP and hey presto referral done. The CT scan was done at a private hospital but under the NHS, which is why I guess the Spire told me the scan is NHS property. Anyway, I'm dropping in on them tomorrow and will insist they give me a copy. I have someone attending the nephrology appointment with me, in case I have a senior moment and forget whet I need to ask! I just hope I get a nephrologist who knows what they're talking about