confused about results, and very worried

[hopeful28]

My father got his 24 hour urine analysis results today.
his urine creatinine is in the normal range, 6.18
but the serum creatinine is 7.5
and the urine volume is 1600ml when it should be not more than 1500ml (what does this mean?)
GFR in the report says 10.6%
protein in urine is 2810mg/24 hour

i am very scared and worried. he is 51. he doesn't feel nauseatic , but does have kidney pain, muscle cramps, tiredness etc. chills also. swelling is not much, ankles are only slightly swollen.

he also got a gamma ray test done, (renal scan)
according to this result the eGFR is 23%. why is there such a huge difference? what is causing such high serum creatinine values? he has been to 3 nephrologists and NONE of them are interested to hear his case or give attention to his results. they are always in a hurry. he is not satisfied.

what should he be doing to avoid dialysis for more time ? besides eating a controlled diet, are there any specific things one can do to delay dialysis? what changes in lifestyle, also about the diet, people say one shouldn't eat to much in a single time. how much can one eat? what should he do to feel filled? he is diabetic and has hypertension too.

but recently he has started to feel very dizzy a lot of the time.

I am worried and am not at all sure what is going on, i have been searching the internet out for information for more than a month. everything is very confusing, from diets to blood values to when should dialysis start.

I am also worried about the effects of dialysis on ones life. I am sorry, but how hard is it on the heart? my father is thinking of hemo-dialysis. (in-centre). because there arent many dialysis options in pakistan.. only incentre hemo or peritoneal, and people usually prefer hemo here. don't know why.

I know my post is getting long, but i heard there are cases of deaths during dialysis. what is that about ? it is so scary...

Thank you so much to people who read through my post,
any replies are very much appreciated.

[monrein]

There is so much information on this board about kidney disease and dialysis that it would be a good idea to start reading.  It is scary and there is so much to learn and manage but that is what all of us here are doing since this is our life.  Also try to get your Dad to join us and take charge of what is about to happen to him from the sounds of things.

His creatinine is high because his kidneys are losing their ability to get rid of it.  Serum creatinine is a good indication of kidney function since it is the byproduct of the normal breakdown of muscle in the body and therefore tends to not be a reflection of diet.  A 24 hour urine test is a better indication of percentage of kidney function than is an eGFR which is basically an guesstimate.  People start dialysis at different percentages, 10% being a rule of thumb.  But everyone is different and I started the second time around at 16% since I felt wretched.  Your Dad needs a nephrologist and he needs to keep hunting till he finds one who appears to have time for him.

Diet is extremely important in all stages of kidney disease.  Pre-dialysis requires a low protein diet, salt is seriously to be avoided (contributes to the high blood pressure too)and he might consult with a dietician and also do a search here on pre-dialysis diet.  Since that's where he's at right now that's the place to start.  He will most likely need to watch potassium and phosphorus... there are lists of foods that are high and low.  The diet is complicated and frustrating and difficult to stick to but not watching what we eat can cause more trouble in the long term so we do what we must.

Dialysis has huge effects on our lives, it changes them dramatically BUT it is important to take heart from those of us,  and there are many, who work around dialysis and live well in spite of it.  Your Dad needs to get information about all forms of dialysis, peritoneal and hemo and not be pushed into a modality that makes the most money for a doctor.  Home hemo is a possibility, a very good one for those who can do it, and nocturnal dialysis is probably the best for cleaning the blood.  Some people swear by peritoneal although others have terrible trouble with it.  Each modality has pros and cons. 

There's no point worrying about the people who die on dialysis...of course there are deaths on D, people die all the time for different reasons BUT what is certain is that those of us who reach the point of needing dialysis will definitely die if we don't get it so we must do the best we can to take charge and be prepared with as much information as we can.

Please ask any specific questions you might have...we have so much collected experience here it's incredible.  I'm so sorry that your Dad and your family are facing this but I am glad you found IHD.   

[RichardMEL]

Monrein has covered it all pretty well I think.

I'd only add my opinion that the serium creatanine reflects the waste products running around in his blood (ie: not cleared into the urine by the kidneys) - that high level of toxins would potentially be causing some of the symptoms he is experiencing.

As for the effects of dialysis on the heart - normal dialysis should NOT stress the heart too much - if the flow rate is pushed too high then potentially yes a bit, but I think that proper management of dialysis treatments would avoid anything like that - if his heart is in reasonable shape I don't think that's going to be a big issue - or rather than pushing things too high would put more stress on the access (fistula or graft) before it affects the heart too much.

At the end of the day he will need dialysis at some point and it will probably make him feel better - shouldn't that be a prime consideration for his quality of life? There are risks with everything and certainly dialysis is no walk in the park, but I try to not worry about "what if's?" and concentrate on what IS - you can drive yourself crazy and decide to do nothing if you worry all day about what could go wrong.

I understand this is scary and confusing for you. All I can do is encourage your father to ask as many questions as possible of his treatment team (it sounds like you are a bit removed from the situation as he is in Pakistan and you are in the US?)

cheers,
richard

[Stoday]

I don't understand the creatinine measurement; you don't give the units in which it is measured. In the UK it's measured as micromol/litre whereas in the USA it's measured in milligrams/deciliter. Normal creatinine is 60-120 μmol/l or 0.7 to 1.4 mg/dl.

With an estimated GFR of 23% he's a long way off of dialysis — years rather than weeks, so I can understand the nephs not haviing too much interest.

I guess that the reason for hemodialysis being the mode of choice in Pakistan is the poor water quality for bathing. Peritoneal dialysis is more prone to contamination and hence peritonitis. I worked in Pakistan on three trips and every time I returned to England with a health problem. I got hospitalised for 6 days after one trip. Such a pity because of all the foreign countries I've worked in, Pakistan was the friendliest.

You're right to be worried about his heart. Here in the UK cardiac causes account for over 50% of deaths of dialysis patients. Infection accounts for 20%.