Getting more information on PKD

[Christine501]

Dear All,

This is my first post, but I follow the posts with interest. I am female, 64, and have known that I had PKD for 30 years . In those days there was not as much knowledge and support as now, and I believe that those of us who have this condition will have much better opportunities to deal with it, and communities like this to turn to for information.

My EGFR is 15, and I have been assessed for Transplant and dialysis, but am making every attempt to put off the day when I need to start. What I have found extremely useful, is 'Patient View' which my Nephrologist enrolled me into. Within hours, my blood results are loaded onto the NHS computer, and I am able to see exactly where there have been changes; my recent bloods showed an increase in Phosphates, and now having done some research, I am attempting to reduce my intake. There are explanations of all the tests on the blood, which enables you to see what some results mean in relation to others. If your Hospital has this option, it is certainly of value. In addition, all your Renal letters are on the website which is useful if you are away from home and need some information.

Another thing which might provide some support, is to attend a PKD Information & Support Conference, organised by the PKD Charity. I attended one a few years ago but my EGFR was above 30; now that I am at EGFR15, I have different questions to ask. The next one I will attend is on 10 Feb 18 in Edinburgh. I recommend attendance, as it gives patients and carers the opportunity to be updated on current medical advancements, and it gives those new to the disease an opportunity to meet other sufferers, and to link in with any local help groups.

All the best for a Happy and Healthy 2019!

[phillen]

Yes my husbands had ckd for many years & they never told you anything! he only found out what stage he was at when we moved areas & the consultant & gp were excellent sadly he went downhill very quickly stage 3 to 5 & on dialysis within less than 1 year! & we never had chance to attend any of the informative meetings on dialysis he chose Pd to start with as it suited our lifestyle used to take it all on hols with us over 5 years that lasted now hes on HD 18 months which he hates as its very much more restricting! he's 62 still waiting to go on transplant list heart problems (another story) patient view is excellent but wait for them to tell you to change your diet there are phosphate binders that you can be given to help bloods can change dramatically my hubby will more or less eat & drink the same but one months bloods can be very different from the next they look for a trend in the run up to dialysis then it gives the dietitians a good basis for them to advice you as sadly many of the things high in phosphate you need as they contain protein which my hubby was low on hence the need for his high doses of phosphate binders! hope i havnt rattled on too much good luck with every thing x

[newbie1956 in reply to phillen]

I appreciate your experience. Rant on, phillin

[Bunkin]

Thanks for your input. I too have PKD and GFR 11. Have recently strayed from my diet but getting back on track in 2018. You are in my prayers. God can do anything!!

[newbie1956]

I agree...Knowledge is KEY to success. Thank you for sharing.

[Christine501]

Hi - Thanks for comments and shared experiences. I agree with Newbie - the more information you have, the better able you are to deal with what lies ahead.