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Just had diagnosis of PKD

(7 Posts)
cyprin Wed 11-May-16 14:28:46

I've been diagnosed with polycycstic kidney disease- stage 2-3- although my kidney function is good.

Riddled with cysts and they are growing- I now have some on my liver too.

They want to rule out an aneurysm (family history) so doing a brain scan in 3 months and have checked liver function today too.

They are talking about a drug called Tolvaptan (a prophylactic) , but have searched contraindications (liver disease- hence today's check) and there are plenty of side effects I do not fancy- chronic constipation, loss of strength and energy, brain fog etc etc.

I want to try to do something naturally - there are lots of accounts of people curing this disease naturally online.

I guess I am looking for someone else in my position who has opted against the drug route, which at best shrinks the cysts and stops new ones forming and at worst prolongs the need for dialysis by 3/4 years, but with much reduced quality of life.

Thoughts ladies?

cyprin Wed 11-May-16 15:26:44

bump

breezydays Wed 11-May-16 20:05:19

Sorry to hear about your pkd diagnosis. I too have been diagnosed with it. However, my kidney function is too low to qualify for tolvaptan so I am unable to help with side effects etc. I did come across a site named daily strength which has a support group for pkd and it has been discussed on there. Also, have you had a look at the pkd charity site?

With regards to people curing this disease by doing something naturally, I am afraid that isn't possible. The important thing seems to be keeping blood pressure down, eating a healthy diet and drinking plenty of water to keep the kidneys functioning as long as possible. I am sure your doctor has told you this though.

cyprin Thu 12-May-16 10:39:54

Thank you breezydays- and I am sorry you also have this diagnosis. How does it affect you in daily life?

I have found the site, thank you. Also joined the FB group- which, by the way, scared the pants off me- pictures of people with very swollen bellies (inflammed organs- makes sense) and huge numbers of people on various drug cocktails.

I know there is no miracle natural cure, but I have been reading about people who manage with lifestyle choices.

I am lucky in the sense that kidney function is still good in spite of other symptoms.

I have recently become vegan, which from what I've read can only be a good thing diet-wise.

There seems to be some conflicting information, but the consultant told me if my kidneys were to fail in 9 years, the drug would give me another 3 healthy years. Charming man.

However, trying to balance the side-effects against the possibility that I might have 3 extra years, against the chance that my kidneys may not fail at all.

I apologise if all this seems a bit insensitive, it's a bit of a minefield.

breezydays Thu 12-May-16 11:55:11

At the moment my day to day life isn't really affected in that I have no pain nor do I suffer from UTI's which I understand are a common problem. As I am at stage 4 now talk of dialysis and transplant has started. Haven't yet seen anyone to discuss these but it will happen soon which is a very scary thought.

I think eating a healthy diet will help with keeping general health good. My blood pressure went very high so I now take blood pressure tablets to keep that within the normal boundaries.

I can understand how you feel about the tolvaptan as of course you don't know if your kidneys will ever fail. I think the problem is that the consultants/doctors don't know what course they are going to take and how quickly. Do you need to make a decision about it soon or do you have time to keep researching. One of the difficulties is that it is new to the uk for pkd treatment.

cyprin Thu 12-May-16 15:31:10

I have until my next meeting with the consultant which is 3 months.

That's great to hear that your life is not too affected, and that you don't have any pain/ UTIs. I used to have have high blood pressure too- but I cut salt, caffeine and spirits and greatly reduced other alcohol and started taking more exercise. It is now within normal range.

I've been suffering with migraine for a few years now, which I believe can be a symptom.

Add to the mix that my DH and I are talking about another baby. Another can of worms. So - questions about whether or not this is a good idea aside- medication would need to be delayed at least another year because PG and BF are both contraindications.

breezydays Thu 12-May-16 19:15:26

Interesting about the migraines. I used to get them sometimes, but since starting on blood pressure meds and also making sure I drink a fair bit of water throughout the day I haven't had one.

It sounds like you need an in depth chat with your consultant about pregnancy and medication. My pkd wasn't discovered until after I had had both our children, so didn't have to be considered at all. I am sure that if you decide to have another baby you will be very closely monitored and well looked after.

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