Hello. GFR 6 and medication change

I think that you are very brave to decide not to have dialysis. I don't have any information on how long you have yet- I suspect it depends on so many factors that it's hard to predict.  I do wish you well though, and hope that you see Christmas.

Bert, your bp isn't critical levels. The doctors might be doing damage limitation just now. You K may have been trending high and hence why they took you off meds. One of the side effects of a lot of meds is increased potassium and the only 2 ways to get rid of it is, through the kidneys or dialysis. As your at 6% you may have been more at risk of heart failure with an elevated potassium than kidney failure. As for kidney time left, depends on your decline rate. Hope you well on your journey.

Thank you, weeled and LynQ for your kind words and good wishes. I don't see not going on dialysis as being particularly brave, and I understand from my nephrologist that it it is not uncommon with older patients (I am seventy).

Onwards to Christmas 2017 -- and beyond !

Hello Bert,

Sadly no one can answer then "How long question" that you so desire the answer to. You have more than likely been taken off the BP meds due to the one ending in pril as they can lower kidney function however Amlodopine has never effected my kidney function (we are all different though).  You potassium is within limits at 5 but the levels are between 3-5 ask if you can have a diet sheet to avoid some of the high potassium foods, again only do this under medical advice.  Regarding you HB levels if this drops too low you can have an iron infusion with some EPO, the two have to be done together as EPO on its own will have little or no effect.  Your BP is on the high side but I am sure your dr is aware of this and will take the necessary measures.  I very much hope you are still with us at Christmas that would be lovely but as explained as much as I wish that for you there are no promises.  Good luck and keep us posted 

Hi Bert!

Sorry to hear that you are not feeling well.....just chin up and try to watch your water intake and diet. 

Just sharing my late FIL's experience with you....he was 77 and in jan 2017 was admitted into hospital with eGFR 7, feeling very sick and hardly eating. Since he too declined dialysis and CPR, he was transferred to Palliative care but was released home as he wanted to be home when he cross over. With kidney failure, one must monitor the water intake and watch his diet...something that he just couldn't be bothered with and demands to eat all the most unhealthy type of food for his diabetes and high blood pressure which is the ultimate cause of his renal failure.

To cut the story short...he survived another 4months till mid May where he was re-admitted into Palliative care again. He had so much water retention in his body...he put on 20kg in about 2 months period. He gotten so heavy that his legs could not carry him and he was falling on the bedroom floor when getting out of bed to go to the bathroom. Once in palliative care, he was placed on a cocktail of painkillers, sedatives and breath ease which he needed due to lungs having fluids as well. That put him in sleep mode mostly until he passed due to heart failure. Prior passing, his last blood test had eGFR at 4 and Creatine >900 and yes he was very anaemic too...was getting a weekly injection of aranesp to boost his red blood counts. 

From this experience....I have noticed that diet and water have direct impact on his overall wellbeing. With Stage 5, he was constantly tired, fussy appetite, thirsty mostly and very restless. With the pitting edema....the swelling starts with feet, than it moves upwards.  His testicles also swelled double in size and that made him very uncomfortable to sit, so he started to lie down mostly. Since he was lying down mostly....the swelling went upwards to his tummy and in later stage all the way to the head.When he was admitted..his whole head was so swollen then he could only keep one eye open...the other one was swollen shut. His normal waistline of 34inches went up to 42...all his pants couldn't fit not his disposable diapers. The swelling overall is so intense that he feels very hard to touch and in the last 3 weeks...he began to experience legs weeping...whereby water starts to sip from the skin of his legs...something like heavy sweating. Diuretics were not given as that will compromise his already renal damage. 

Just sharing with you what we went through...it's not intended to scare you...but it's the plainess of what this disease holds and hopefully you would have a better control over your progress. 

God Bless and feel free to chat with me anytime. 

Take Care!

Hi, my husband is now GFR 6 with polycystic kidney disease. Not suitable for transplant and declined dialysis.

He has had a gradual decline over the last year and is now not at all well. His Bp is regularly up to 200/89 despite 5 medications.

We asked the specialist outright what the timeline would be and he said less than 12 months, we are coming up to 12 now and I am pretty sure my husband won't make Christmas.

His age is against him though (80).

if your other readings are stable and not too abnormal you have a good chance. Good luck with everything .