Gfr down to 19

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Gfr down to 19

Postby angie100 » Thu Dec 22, 2016 4:48 pm

Hi there..iv had some scary news regarding my latest blood test results.i wonder if anyone has been in the same sort of situation..i have been on this journey of CKD for 25 yrs .due to lupus which hit hard on the kidneys..for the last 3 years iv been a stage 4..gfr has hovered around 22.the test I had today has shown it to decrease to 19.my creatinine just 4 months ago was 215 and now it's up to 246.i have had a bad flu the past week and maybe have not been hydrated enough.my potassium is 4.8..within normal levels.this is a huge set back as I feel scared of the future.has anyone had a sharp rise is creatinine levels and then it's gone back down again?is this a certain decline or should I base it on a second blood test.i still have a slight cough.im increasing my fluid intake.. any advice appreciated..im very worried.thank you
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Re: Gfr down to 19

Postby Tibbs » Thu Dec 22, 2016 9:54 pm

I've had it both pre- and post-transplant.

Get propoerly hydrated and see what it goes back to. Post transplant I've gone from 380 to 220 in less than 12 hours after a period of dehydration. 220 is my post-transplant baseline.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
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Re: Gfr down to 19

Postby angie100 » Fri Dec 23, 2016 1:39 pm

Many thanks Tibbs for your kind reply..i have been drinking a lot more so let's hope it reflects in the result.iv tried to hold on to this function for a while but I guess when it's time I'll have to accept it.iv tried contacting the hospital but no response as of yet.i do feel more tired these days but I had the worst flu..i can see from your results what a huge difference hydration makes to creatinine..il try and have 6-8 glasses..many thanks x
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Re: Gfr down to 19

Postby freddyy » Tue Dec 27, 2016 7:28 am

I have also had a pretty sharp decline in eGFR which was probably caused by an inflammation in the intestines (IBD) which in turn made me less able to absorb liquids through the intestines.

Over a period of half a year I dropped from 12 down to 8%, which was very scary indeed.
I also started feeling much more tired, nauseous and many problems with stomach (daily diarrhea).

But thankfully doctor sent me to a colonoscopy and found an inflammation in the colon (either Crohn's or Ulcerous Colitis, could not classify it). After starting prednisolone (cortisone) treatment my nausea and stomach problems disappeared within 1 day (!), and after that my eGFR raised by a whole % every week for the following 4 weeks, back up to 12% again. Been stable for a while after that.

So it seems other illnesses can indeed make the kidney values worse, and with some luck it can also bounce back after treatment.
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Re: Gfr down to 19

Postby angie100 » Wed Dec 28, 2016 10:06 pm

I agree with you Freddyy..i think when there is inflammation in the body the kidneys take a hit..just scary as it's the fear of the unknown..iv had a terrible cold.i think this has contributed to the gfr decreasing..my cough is lingering and I don't seem to be recovering..i have booked an appointment with the gp..i guess treatment is the key..when your gfr went lower did you have many symptoms?iv also got this painful mouth ulcer..not sure if that's a sign things arnt right..how long has your function at 12% lasted..?have you been doing anything to keep it stable via diet and water intake?
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Re: Gfr down to 19

Postby freddyy » Thu Dec 29, 2016 7:43 am

Yes, the inflammation probably takes it's toll. Looking back, they always said I had a bit elevated inflammation markers in my blood tests, but sadly never investigated that further... But hindsight is 20/20.

It's hard to tell symptoms from lower GFR apart from symptoms of my bowel inflammation. But the problems I had were mostly overwhelming tiredness and nausea. Spent some nights vomiting... but mostly the meds (ondansetron, atarax) helped me to keep it in.
Also some skin rashes, a lot of itching.
The cortisone (prednisolone) temporarily removed most of the tiredness and I felt like a had more energy than in years. As I tapered down on the dosage I have also lost that energy however. Nausea occurs rarely now though.

Other than that, not so many troubles. But I am lucky in that all my other blood values are good (phosphor, potassium, salts, blood cells, iron...). I do eat a low protein diet (0.6g/kg daily ~= 46g/day) with some allowance for cheating days (my dietist said that is ok). I try to drink a few glasses extra of fluid per day when I have stomach problems, but normally I'd drink around 2 liters.
I do not care much about my potassium or phosphor intake because luckily my kidney seems able to still balance them out. Just avoid some extra salts.

It was about 2 months ago since my GFR bounced back up. It was actually quite a relief, because I am currently waiting for my brother to finish assessment as a kidney donor, and expecting a transplant sometime in February/March probably. I was worried I would need to start dialysis treatment before transplant, but now it looks like I won't need that.
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Re: Gfr down to 19

Postby angie100 » Thu Dec 29, 2016 10:36 pm

Thank you Freddyy for sharing your experience..i relate to a lot of what you've mentioned..with my initial diagnosis of lupus an auto immune disease,I was getting a lot of symptoms,flu ,sensitivity to light..it took the doctors a year to find out the cause..my blood pressure was elevated bearing in mind I was only 13 years old at the time..so within that year my kidneys took a battering and I was left with less than half my kidney function..im now 40yrs and have been trying my best to maintain what was left.i think due to the scarring the function will decrease eventually..im just trying to keep well for as long as possible..here in the UK at this time there are lots of infections hence this problem.i turned vegetarian 6yrs back.i eat vegetarian diet but it can get limited..im finding it hard to motivate myself..iv not got any proper symptoms yet like nausea vomiting or swelling..i guess this is an internal thing..u can't always tell..i am worried about dialysis as it will be a life changing moment..its great that you have a chance to get a transplant..it will be a new lease of life..hope everything goes as planned.in the meantime well done for maintaining your function..i shall try and drink a bit more..hopefully that will stabilise the position.. Will be nice to keep in touch..best wishes
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Re: Gfr down to 19

Postby Notso » Fri Dec 30, 2016 2:58 am

I had much the same thing in November. Dropped from 29 to 17 in 3 months. The neph took me off irbesartin for a week and retested. In a week I came back to 24 and was put on a half dose of irbesartin. A week off the irbesartin had my BP way up though.
I will get bloods done again shortly to see how I'm travelling.
The neph and renal nurse told me that illness and/or dehydration can easily bring your number down temporarily.
So I know how you feel but hopefully your next bloods will show improvement.
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Re: Gfr down to 19

Postby angie100 » Sat Dec 31, 2016 9:41 pm

Hi Notso..thank you for your kind response..i can see we have had similar experiences regarding a drop in GFR..its hard to cope sometimes with a lower kidney function..i dread each blood test..always touch and go..im trying to get rid of my flu so I can get a true reading..and drink..its true some of the drugs we have to combat other areas affect the kidney..its a tricky balance..i hope ur results are stable too..wish you a happy New year..
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Re: Gfr down to 19

Postby Notso » Tue Feb 07, 2017 1:37 am

Hey Angie,

been wondering how you ended up. It looks like mine is a permanent drop. The last 2 egfr numbers were 24 then 21. My neph thinks I will settle in around the low 20's so I'm still kicking.
There's nothing I can do about it but try to stay as healthy as possible. For me, low 20's is better than the 17 I had a few months ago.

Hope you're doing OK.
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Re: Gfr down to 19

Postby angie100 » Fri Feb 17, 2017 12:34 pm

Hi Notso

Good to hear from you..thank you for asking after me..i had my blood tests at the end of Jan.. the creatinine levels have come down to 221..so like yourself my gfr is hovering around 21/22..it is scary when there is a drop..i did have an infection at the time so maybe the reason..you're doing the right thing keeping healthy..i think a positive attitude helps..we have to hold out for as long as possible..im due to have my tests repeated in March so let's see..im still stuck with my diet..it gets a bit limited..any ideas on what works for you ?hope ur well..take care angie
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Re: Gfr down to 19

Postby wagolynn » Fri Feb 17, 2017 4:26 pm

Hi angie100,

I am surprised that at your eGFR you are on a diet, has this been organised by your consultant?

The diet usually only applies to patents on dialysis to make up for dialysis not being very good at removing Phosphate, and Potassium.

Until on dialysis the best strategy is to get as close as you can to 'five a day', to improve, and maintain your general health, unless advised otherwise by your consultant/dietician.

You should be eliminating any added salt to reduce blood pressure, try pepper as a substitute, Low salt, and similar are high in phosphate so are not suitable.

Look out for salt in soft drinks, and energy drinks.

There is some information here: http://www.kidneypatientguide.org.uk/recipes.php
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Re: Gfr down to 19

Postby diannemr » Fri Feb 17, 2017 9:04 pm

I agree that illness of any kind adds an additional burden on the kidneys. Were you taking any medication for the flu? Many kinds of medications increase creatinine. Makes sense to get a second test to verify where you're at. I've been there, done that, on the scary spikes in creatinine. Take care of yourself, and for your own peace of mind, get re-tested.
All the best,
Dianne
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Re: Gfr down to 19

Postby Notso » Thu Feb 23, 2017 7:53 am

Just out of interest, as soon as I hit Stage 5 I was told to watch my diet. Avoid the potassium, phosphorus and of course sodium. There must be differing schools of thought with regard to the treatment of CKD I suppose.
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Re: Gfr down to 19

Postby wagolynn » Thu Feb 23, 2017 4:28 pm

Notso wrote:Just out of interest, as soon as I hit Stage 5 I was told to watch my diet. Avoid the potassium, phosphorus and of course sodium. There must be differing schools of thought with regard to the treatment of CKD I suppose.


Did you get an appointment with a dietician, certainly as kidneys fail they stop controlling Potassium, and Phosphate, Sodium I would expect to be eliminated from your diet long before stage 5.

The problem with Potassium, and Phosphate is, dialysis is not very good at removing/controlling them but both, at the correct level, are essential to life.

In this area of the UK. they tend to leave them alone until the patient is on dialysis or blood results suggest action needs to be taken, in either case diet is supervised by a dietician. Perhaps, supervised is a bit strong, the intention is that the patient and dietician work together to get the patients levels within safe limits.
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