Pkd

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Nunu
Posts: 4
Joined: Sat Dec 05, 2015 6:32 pm

Pkd

Post by Nunu »

Hi all newly diagnosed with Pkd stage 3 big shook.Dont know which way is up at the moment waiting for appointment with renal consultant,any advise would be greatly appreciated
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Pkd

Post by wagolynn »

Hello Nunu,
Sorry to read about your recent diagnosis of PKD, it is a bit of a shock but we never know what is waiting for us around that metaphorical corner. Perhaps it's best that way...

The KPG website will get you started on looking for information - http://www.kidneypatientguide.org.uk/most.php
And I find this one reliable if a little more technical - http://www.edren.org/pages/edreninfo/po ... ys-pkd.php
Otherwise you will find all sorts of 'information' on the web but unfortunately a lot is rubbish and dangerous.
The more you understand your condition the more comfortable you will be.

What happens next? - well, not a lot, you will have tests and an ultrasound scan to confirm the diagnosis. They will be interested in your family history, PKD is usually inherited but some times it happens spontaneously. Steps will be taken to get your blood pressure down (BP), high BP destroys kidneys.

After that you will be monitored (blood tests) to keep an eye on the progress of the condition, and that is about it for a while.
The length of 'while' is unknown, everyone progresses at a different rate.

There is not a 'cure', so we wait until we are bad enough to need a transplant, and or dialysis or both.
Dialysis is meant to keep patients healthy until a transplant is available.

Try not to worry, it will not change the situation...

If you read something that it is a bit confusing, ask on here or better still ask your consultant, you will find most consultants will be very helpful.

Best wishes.
Nunu
Posts: 4
Joined: Sat Dec 05, 2015 6:32 pm

Re: Pkd

Post by Nunu »

Thank you had scan in hospital saw a consultant while in there but only had a 15 min talk with him when he delivered the bad news I had no idea.Like you say will feel better when I get to see the renal people in clinic.
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Pkd

Post by wagolynn »

Hi Nunu,
If you have had the ultrasound scan, that is the clincher, welcome to the community.

It is very likely that your parents or grandparents showed symptoms of failing kidneys, there is a 50/50 chance that you will pass it on to your offspring. There is steady progress in the renal field but I think the next steps forward are a few years off yet.

I suggest, you swat-up on PKD, and this will enable you to go to your next clinic with a written list of questions. I think, most people find it best to write down questions, otherwise in the clinic we tend to forget some.

As to life, work etc. I worked for about 12 years after diagnosis, until I retired age 69, by then I was in trouble with lack of energy but I did not go onto dialysis for about 2 more years.

Depending on your blood results, they will set up wappointments for clinics, ranging from 1 per month, to 1 per year, until your kidney function declines.
Sometimes (not often) cysts can become infected, antibiotics usually sorts that out.

As the number of cysts increases causing your kidney function to drop, your immune system becomes depressed, leaving you less able to overcome minor ailments.

You may also have a drop in your red blood cell count, this makes you feel very tired, Iron infusions and/or EPO injections gets things back to normal.
EPO is a hormone, produced by healthy kidneys, that signals more red cells are required.

That is what the regular blood test are about, to keep an eye in these things.

Food - healthy eating (5-a-day) helps to support your general health, until you are on dialysis ignore all the stuff you will find about Phosphate and Potassium, try to get any added salt out of your diet, this helps to keep blood pressure down. You will most likely be encouraged to drink more.

Good luck.
Nunu
Posts: 4
Joined: Sat Dec 05, 2015 6:32 pm

Re: Pkd

Post by Nunu »

Just got latest blood results creatinine 450 gfr 9 what does this mean don't see the consultant till the 22nd.Feeling a bit worried
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Pkd

Post by wagolynn »

Hi Nunu,
Looks as though your eGFR is getting low but it is only an estimate (unless your blood data actually says GFR), eGFR is prone to errors. I think, consultants tend to look at the trend, and how the patient feels.

How do you feel?
Nunu
Posts: 4
Joined: Sat Dec 05, 2015 6:32 pm

Re: Pkd

Post by Nunu »

Hi I feel fine just a bit tired but not in pain,no loss of appetite so all this has come as a complete shook.Only went to the doctors cos I was getting cramps in my ankles at night.
Good I found this site don't feel so alone now thanks for your advice will see what the consultant has to say.
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