New lady

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New lady

Postby Mandypink » Wed Nov 16, 2016 6:19 pm

Hi everyone I am new on here I am mandypink from Brighton and just had my 50th birthday and only found out I have pkd three weeks ago still waitng for a hospital appoiment to see a kidney consultant in the meantime I only knew about this by going on google the hospital didn't explain a lot to me so I was shocked and upset comming to terms with having this I am hoping people out there can tell me a bit more or help me find out any more info as feeling anixous :(
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Re: New lady

Postby Johnylefox » Wed Nov 16, 2016 9:01 pm

Lots of great people here and on various Facebook sites.
You are certainly not alone.
PKD is not my illness, I am more of an IGA man.
Take care.
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Re: New lady

Postby Dixie1 » Thu Nov 17, 2016 2:16 pm

Hi Mandypink

Welcome to the group. This must have come as quite a shock to you. I also have PKD but am fortunate enough (if that is the right expression!?!) that it runs in my family and so, not only have I known that I have had it for 30 years (I am 51), but I also already knew quite a lot about it when I was diagnosed. Watching my Grandfather, father and Uncle deal with the disease in really positive ways (they continued to live life to the full with plenty of travel etc) helped.

It is bound to take you a while to adjust but, once you have, you will learn that this is not a death sentence, it's a bump in the road and you still have lots of living ahead of you, it just maybe slightly more complicated! :D Ask lots of questions when you see the consultant (write them all down before you go). In the meantime, if there is anything you'd like to know specifically then just let me know and I will do my best to answer. Good luck! :D
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Re: New lady

Postby wagolynn » Thu Nov 17, 2016 4:33 pm

Hi Mandypink,

This link should help with the basics,, whilst PKD is a specific condition the resultant kidney failure , and it's consequences are pretty much the same.

Some common questions answered: - It is not possible to predict just when your kidneys will fail or even if they actually will.

There is no such thing as a, 'kidney diet', until you are actually on dialysis, the only useful diet is the one pushed by the medical world, i.e. 'five a day' - five portions of fruit or vegetables per day, along with a portion of first class protein (usually meat/fish).
This should keep you healthy.

You will find there is a common misunderstanding about diet, the diet mentioned is for patients on dialysis, because dialysis doe's not remove Potassium and Phosphates very well.
To counter this dialysis patents have to take over one of the kidneys functions, controlling the levels of Potassium and Phosphate in the body. Most of our normal foods have both these elements in them to differing levels, so when on dialysis, we have to pick and choose the foods we eat to keep them at safe levels.

If you make changes to your diet you must remember to tell your nephrologist/dietician about it.

Calcium - the kidneys are involved in the control of calcium, again our 'normal' foods tend to supply more than is needed, as the condition progresses it may become necessary to reduce calcium intake, usually by cutting out cheese, and reducing milk.

If any dietary adjustments are required your nephrologist will tell you.

There has been research going on looking for a cure, the result to date is a drug said to slow down the progress of PKD in some patients, however NICE has said the benefits do not justify the cost so it is not in use at the moment in the UK.

As the condition progresses, you can become anaemic (low haemoglobin or low red cell count) due to the kidneys not producing a hormone called EPO (short name), this should be dealt with, usually by iron infusions, and/or EPO injections, over the counter iron pills are a waste of money.

Blood Pressure (PB) - this needs to be kept down as high PB destroys kidneys, target is 120/80.

Take care with anything you find on the internet, there is a lot of dangerous rubbish out there.

Best wishes.
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Re: New lady

Postby sanela » Fri Nov 18, 2016 1:47 pm

hello Mandypink,

I too have PKD (I’m also 50 :), have been through all the stages and now transplanted since 2009. As Dixie1 said, it's not the end of the world. Take your time to let it sink in, learn as much as you can about it (so you can ask questions when you see the nephrologist,) or as much as you want to - plenty people out there don't really want to know too much (and this is OK too).
You don't mention if anybody in your family has PKD or if you are the first, or what stage of the disease are doesn't matter really, PKD will take its path regardless. Worth keeping in mind that not everybody’s kidneys will fail, I think the ratio is 60% of people will end up in failure. Every patient is different and it varies greatly even within families. My mother’s PKD was very different to mine – my kidneys failed at 43, hers at 59.
I can recommend the PKD charity for more information and support. Also, there is/are facebook groups, if facebook is your thing (it’s not mine hence I don’t if it’s just the one) there is a yahoo group too, not very active but there is a core of good people who will always help with info and advice.
Here in London, there is a group of patients are various stages of PKD, me including, who meet every couple of months for support, friendship, just a chat over coffee or tea, lunch etc. You are welcome to come along, if you want more details send me a private message and I’ll respond to that.

Finally, Wagolyn has given good sensible advice, I just want to correct one thing. The medication, Tolvaptan, that slows down the growth of the cysts, is actually licenced by NICE. There are many people who have been prescribed this medication bu,t I don’t know what the criteria is to qualify. This is best discussed with your nephrologist.

all the best, Sanela
Walter, 15 september 2009
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Location: London

Re: New lady

Postby Zennor » Wed Nov 23, 2016 2:53 pm


Saw your post. I was living in Brighton when I found out that I had PKD following a scan for a kidney stone. I went through all the stages over a 15 year period and was transplanted in January 2009. I agree with the advice already give. My experience of the RSCH kidney unit was all good.

One of the issues that all consultants have is that some patients want all the detail and others are scared by it, so they have to learn what level you want.

I found out from early on that (in some horrible buzzword) that I wanted to take ownership of my disease so I learnt all I could (though be very careful with the internet, especially sites based in the USA)

With PKD the only thing that mattered for me was BP control so that will probably be your first lesson.

When I was at the Brighton unit there was a renal nurse counselor - your first point of call for information and advise between appointments.

So here is my (incomplete) list in no particular order, of what I found from experience

1/ Never go to an appointment alone, have someone in with you as you will only hear half of what you are being told
2/ If you have questions to raise before the appointment make notes otherwise you will forget
3/ Avoid all salt but remember that there is a lot of salt in processed food (and loads in bread)
4/ If you can make an early appointment you can be in and out without paying for on-street parking
5/ In my time Tony was the receptionist who handled bookings. The nicest most helpful person you could hope to meet (in fact the opposite of my current GP's gatekeeper)
6/ Sign up for Patientview- ask at the kidney unit

I recently spoke to my new consultant about Tolvaptan and he said that it slowed down the progression of PKD by several years though would not be used at least until Stage 2.

regards and good luck
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Re: New lady

Postby wagolynn » Thu Nov 24, 2016 6:38 pm

Re Bread and salt - I use a bread making machine, with a little experimentation bred can be made with very low or no salt(I make bread with 70% wholemeal, and 30% white, bread making flour, plus 1/4 teaspoon salt).
Vitamin C helps the yeast, (about 1/8th of a tea spoon more does no harm) adding gluten (about 1%) helps but tends to make the bread taste sweet.
With modern dried yeast sugar is not really needed, make sure you get dried yeast for bread machines.

These tweaks are to compensate for the missing salt, the salt helps in the development of the gluten.

With bread machines you will find they are sensitive to the amount of water, each batch of flour will be slightly different.

The clues are - If at the mixing stage you can hear the dough rolling around the tin, add a table spoon of water.
The idea is for the dough to stick to the tin and the mixing paddle then stretches bits of it as it goes round, the dough still moves around but slower than the paddle.
A baked loaf, when cut, that has a lot of bubbles bigger than peas was on the wet side.

Or you could make it by hand, I'm too lazy.
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