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!