Are you aware of Renal Patient View?

[eddyg]

[Silv]

Yes I find it a very useful tool.

[eddyg]

I have just enrolled after finding out from the PKD Charity but if I looked closely on all my letters from the hospital it was right there in small print, almost as if they did not want me to find out about it!!!

[Kldpkd]

No- I have no idea what this is. I have been a renal outpatient for 15 years since diagnosis and currently am being treated for the second time for large cysts causing a lot of pain and discomfort - aspiration awaited. I have had several bouts of severe infections and been hospitalised during this time. Strong family history- many on dialysis and some had transplants.

Should I know about this? Thanks.

[eddyg in reply to Kldpkd]

Check that your hospital is operating this, go to the renal patient view website and see if your hospital is on the list. I am interested in why you have been offered aspiration, my renal unit have said no to this.

[Kldpkd in reply to eddyg]

Thanks I will do - I am under Canterbury I guess i am lucky they are willing to try again. I had good (albeit short term gain) results last time as the large ones drained were obviously the culprits in pain and swelling/uncomfortableness.

Its quite painful but I felt worth it. Maybe try asking again - or ask for reasons why they wont try it at least once? Good luck.

Regards - Kim

[PKDC-Admin Partner in reply to Kldpkd]

Which hospital/renal clinic do you attend?

[eddyg]

Check that your hospital is operating this, go to the renal patient view website and see if your hospital is on the list. I am interested in why you have been offered aspiration, my renal unit have said no to this.

[Hidden]

It is very good for accessing blood test results and reliable advice. The system for emailing your consultant could be much better though and is not confidential or direct to your consultant.

[Hidden]

Yes it is very good. Have used it since 2009. The only thing that could be better is the ability to email your consultant. It should go to him automatically and be secured.

[PKDUK]

I'm reposting this in several threads hoping it will help others who may not be aware how to self-manage the condition:

I am very annoyed with the NHS. The information they have given me is outdated and wrong. They have done nothing to help me out of this disease - and my NHS is suppose to be the best in the country...

Surgery has a 98% success rate for this condition. Except the surgery done in the UK for cysts seem to be from the dark ages and is done wrong (outdated), and does nothing to resolve the problems. I am saving money to go abroad for surgery. The problem with the surgery in the UK is that they don't do the right procedure to stop the cysts from filling up again like they do in other countries, needed to resolve the problem.

I've been really, really sick from this condition with severe back pains, kidney pains, massive water retention and swelling, feeling tired all the time, very high bp and so on, and have now managed to find a method to reduce the worse effects from it and go back to functioning somewhat well:

I highly recommend you being very careful with high acidity food and drink. You can find a lot of information on the internet on high acid versus alkaline food. Acidity is an absolute enemy to those of us with this condition. When things get really bad (I should do it daily before sleep actually), I drink a glass of water with 2 spoons of sodium bicarbonate. It brings down acidity levels real fast and has been a life savior for me with both kidney and liver cysts.

I've tried medicines but I now stay away from them. All they do is conceal the problems and symptoms, making it worse, and add further burdens on the kidneys and liver. You will have a better effect with strict dietary changes and sodium bicarbonate. And if you've overdone the food and start feeling really bad, drink water with sodium bicarbonate [*not on an empty stomach or you'll have cramps!] and go on a strict fast for a few days with simple food without spices, oils, butter, etc. When I was at my worse I had oatmeal, simple veggie soups with no salt or spices - more plain food. That resolved the problems so when we get really sick, its the food that's causing it.

A low acid diet (vegan is necessary) is a must or it gets very uncomfortable, painful, the swelling gets out of control and the bp gets really high. Low acid (alkaline) diets will help to keep the swelling down and reduce the production of more cysts.

I'd also recommend you to stay away from consuming too many nuts or protein. I noticed that protein does really bad on me. I went on a nut-binge before Christmas, and believe me, my crap turned white (!) in color and I really thought it would be the last day for me. I past out several times and felt like I was dying. I was sooo sick for two weeks until I observed a super strict and mild diet! My kidney's and liver just couldn't process all the protein from the nuts.

I highly recommend Dr Robert Young's recommendations on low acid diets. There are several good videos on this you can view on YouTube, but he's the best! Researcher on the subject for many years.

If you change your dietary habits things will become much easier and you will win some time before you (may) decide on surgery.

Hope this helps.