Stage 4 progressing to Stage 5

[pet675]

Hi all,

I'm new to the forum... I was diagnosed almost 10 years ago with IGA nephropathy. My gfr was hovering around the 23% mark and creatinine was around 250 for most of the 10 years... However my latest blood test has seen it drop down to 18% with 360 creatinine... I thought it may have been the new blood pressure meds the doc put me on so I switch back to my old med and did another blood test 1 /2 weeks later and its down to 17% and 365 creatinine.... I'm so depressed... I eat healthy and nothing really has change in diet of lifestyle... I'm not ready for dialysis... Some days I just feel like dieing...

I really don't know whey after 10 years it's suddenly dropping... I don't feel sick so I don't think it's a virus... what are the chances of my kidney returning back to 23%? Is there anything else that could cause this decline or is it just the nature of my disease?

[hotashel]

Hi,

I am CKD 5 now mine stayed stable for about 20 years since I was diagnosed with some sort of kidney problem when I was 13, then about 2 years ago it started to drop, in April this year I was told in 18 months I would need a transplant and they started to plan, however it dropped further and 7 months later I am on dialysis.
The reality is your kidney function won't go back up but don't be sad as scary as the though of dialysis is its not that bad just a bit of a pain in the arse, however I am grateful as I am alive.
I was 9% before I started and it was all a bit of a rush, I knew I wanted to do PD at home because I can't be doing with being in the hospital all of the time (I am there enough) and I wanted to carry on working etc and have some control. I was quite shocked when I received the call to have the PD catheter inserted as I wasn't expecting it to be so quick, I then sat in the pre op room for 7 hours before they told me I couldn't have it done. I had to really stand my ground and explain I was going nowhere until it was done, there was a bit of a stand off and I won. In the end I had to be booked in through A & E as an emergency or at least that is what they told the computer.
Have a bit of a look at the different types and what they are about and see which you think would suit you best, and remember you can always change if the one you pick turns out not to be for you.
Dont be sad Merry Christmas
x

[wagolynn]

Hi pet675,
There is never a good time to get news like this but all is not lost, life will go on.

Hotashel is correct in suggesting there is unlikely to be a way back to where you were (eGFR is prone to error so a single reading does not mean much it is a trend that matters) but 17% does not warrant any immediate action. No one can predict how rapidly your kidneys will deteriorate but your medical team will be monitoring your progress to decide when it is time to intervene. Dialysis, in any form is a lot better than you imagine it to be.

The only thing to be done at the moment is to get your blood pressure down (high blood pressure kills off kidneys even healthy ones) the target is around 120/80, to this end eliminating added salt in food and drinks, in cooking, and at the table will be a big help. Lo Salt and similar products are not suitable for people with CKD so they cannot be used as a salt substitute.

Other than salt, do not make any diet changes you may read about, they may be necessary later but should only be done under medical supervision, a drift toward five a day (vegetables) would be helpful.

Best wishes.

[pet675]

Thanks for the kind words. I really appreciate it... Today I feel a lot better... Not depressed anymore... I think I've accepted the fact that this is going to happen sooner rather than later... It was the thought of being a burden to my wife and kids... I know its not the case but feels that way...

My blood pressure is good and has been for a while... Diet wise I think I'm pretty healthy... Just need to eat a more vegetables... Salt wise I don't eat that much as the blood test always shows sodium as low... My cholesterol is a tad high so just got to lose 5 kgs or so... My bmi is perfect but my nephrologist wants me to lose a bit of weight...

I'm curious though whether your kidney functions vary through out the day...

[wagolynn]

Hi pet675,
When every thing is working normally, our kidneys work away in the background doing their, very important, stuff. They cannot work effectively if we are dehydrated and they may temporarily stop working if we are in shock. At night we produce a hormone that shuts down or reduces kidney function.

Urea and creatinine output will depend on the amount of physical activity.

Sick kidneys will try to function, at a reduced rate, if at all possible, until, in the end, they stop working altogether, at this point we become totally reliant upon dialysis. Dialysis is usually started around 10% function but other factors may influence just when. The rate of decline vairies from patient to patient so it is difficult to put a time scale on it.

[Jimmy]

Hello Pet,
I am in similar boat to you, my GFR just dropped to 17, I am 65 years old with vascular problems as well as very little use in both my arms. The thought of sitting on a machine 3 times a week keeps me awake at night, along with getting up for a wee 6 or 7 times.

[wagolynn]

Hello Pet,
I am in similar boat to you, my GFR just dropped to 17, I am 65 years old with vascular problems as well as very little use in both my arms. The thought of sitting on a machine 3 times a week keeps me awake at night, along with getting up for a wee 6 or 7 times.

Haemodialysis is nothing like as bad/difficult as you think it will be.

Best wishes

[manohar]

Hi am manohar from India,

I saw your posts in this forum.

I saw that you also have some incresed serum creatinine levels,

please share your exp.

age-33 years,
serum creatinine =1.1 mg/dl
efgr =88
serumuric acid =5.1 mg/dl
serum urea =37.1 mg/dl

I have not undergone kidney biopsy,please guide me how long we can survive still?

[Chris In Trowbridge]

serum creatinine =1.1 mg/dl
efgr =88

Not a doctor but thouse results are in the normal range i think, unless you have kidney problems confirmed, a egfr of 88 is great, and nothing to do with stage 4 going to stage 5.