How low can you go?

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How low can you go?

Postby marier » Thu May 24, 2012 2:15 pm

Hi All. I'm at 490 creatine, 8% eGFR and I'm feeling sort of okay. I get tired very easily and could nicely fall asleep at around 2pm each day, but I dont feel ill. I am doing silly things tho, like getting in the shower, washing and conditioning my hair and then realising when getting dried that I have forgotten to wash my body! Also, this hot weather is making my ankes swell up. How low did your eGFR get to without dialysis and how did you feel?
Dont let a little thing like kidney disease hold you back
Tranplant November 24th 2012. Thank you so much, donor family.
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Joined: Mon Sep 25, 2006 11:40 am

Re: How low can you go?

Postby Tibbs » Thu May 24, 2012 3:20 pm

Hmm good question - I'm at about the same Creatinine level as you (but 14% eGFR because a. I'm a bloke and b. I'm a big fat bloke) and feel almost exactly the same as I did at 17%.

Some of us are lucky I guess. I know what you mean about the sleeping. If I don't get my 9 hours, I'm useless the next day. I went out on the pop properly for the first time in ages last Friday, and it took me until Tuesday to get over it!
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: How low can you go?

Postby Rachael Turner » Thu May 24, 2012 5:39 pm

I was down to egfr 13% in April 2012. My egfr dropped considerably at Christmas, so I was asked to look for living donors. Fortunately for me, my husband was an almost exact match and I received his Kidney on 30 April. Even the day after the op, I hadn't realised quite how ill I was, and even today, it is still sinking in how much I coped with life.
If you are anything like me, I am a mum, work full time, and just kept going with life - I think that's sort of what you do.
Now I have had the transplant I feel different. I am no longer out of breath, tired, lethargic. Don't get me wrong, I thought I was 'normal' before I had the transplant, but it is not till you are sort of forced into either dialysis or lucky enough to have a transplant, that you realise quite how much you coped with life previously.
I do hope you are lucky and continue to be of good health, but for me, I was and am still a little scared, but I can see the future, and hopefully it is bright, and I will soon be able to play with my daughter, enjoy time with the family in general.
Good luck x
Rachael Turner
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Joined: Sat Jul 02, 2011 8:04 pm

Re: How low can you go?

Postby dirverd » Thu May 24, 2012 6:49 pm

I started PD at eGFR 9.

Like you I didn't feel too bad and kept working and managed to keep running (albeit slowly and cycling at weekends).

They normal range to start dialysis ranges from around eGFR 13 down to as low as 6 in some cases but this quite rare.

One thing I would say is, when I started dialysis I actually felt bit better. Plus it's not just how you feel, dialysis will help your other blood results. Before dialysis my potassium was high (dangerous for the heart) and my phosphate level was high too ( can cause bone problems if high for too long)

Swollen ankles are sanother common sign of CKD, dialysis will also help with this.

I don't mean to scare you but there are other things to take into consideration, as well as how you feel.

The Drs will be well aware of your blood results and if any of these are high they will know.

Let us know how you get on. Good luck.
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Re: How low can you go?

Postby Chris66 » Thu May 24, 2012 7:16 pm

I have recently started dialysis and my createnine is 1250 (bloods done a few days ago) and im supposed to be at 3 % and even with dialysis i still feel like shit most of the time,if my numbers are not significantly improved tomorrow it will be a neckline and some HD for me i have been told,im hoping it will get better as i get more established on it (CAPD)
I was working up until i had my cath fitted last week and i was at around 8% then and i felt like i wanted to crawl in a hole and die.Not a nice feeling at all.
Diagnosed 2006 at stage 3
ESRF May 2012
APD May /Sept
Home Heamo,AV Fistula
Waiting for that call one day.
Never argue with an idiot,they will drag you down to their level then beat you with experience.
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Joined: Wed Feb 15, 2012 9:30 pm
Location: West Midlands

Re: How low can you go?

Postby jan4alan » Thu May 24, 2012 8:01 pm

My eGFR and creatinine are the same as yours at 8% and around the 500 mark. Earlier this year I started PD but after loads of problems and 3 ops it has been considered a failure and the last of the catheters has been removed. Now I am waiting for a fistula, HD hopefully at home in time. It's important to watch your diet carefully and to exercise daily if you can. Fortunately I don't have to work now but I am involved with various charity jobs, including Kidney Research UK. I'm full of admiration for those who carry on at work as it is so tiring and harder to concentrate.
Good luck.
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Joined: Thu Mar 29, 2012 7:08 pm

Re: How low can you go?

Postby cazpi » Fri May 25, 2012 9:51 am

I have met someone who has been around 6% with no dialysis for some time, and doesn't feel too bad. She takes things at a leisurely pace, but lives apretty normal life.

I had a phase of doing very forgetful or daft things, and thought i was going a bit mad for a while, with hindsight I now blame anaemia.
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Re: How low can you go?

Postby marier » Fri May 25, 2012 10:49 am

Thanks for your input. Yes, I still work full time, albeit a desk job. I walk the dog twice each day, that's my daily exercise, but poor thing doesnt get too far these days, its just as well he's got short legs and doesnt need a lot of exercise!. I know my blood must be 'dirty' that's why I am a bit worried about the memory and concentration lapses. Even though I dont feel ill, I dont think I'll last out much longer without dialysis that's why I asked the question originally.
Dont let a little thing like kidney disease hold you back
Tranplant November 24th 2012. Thank you so much, donor family.
Posts: 179
Joined: Mon Sep 25, 2006 11:40 am

Re: How low can you go?

Postby lainiepop » Fri May 25, 2012 8:13 pm

Hi I've been at gfr 10 the last 9 Mths had a drop to 8 a couple mths ago but 2 weeks ago was 10 again. I feel fine & am not on dialysis as I'm having a transplant next week, they said they Wouldn't put me on it unless I felt ill or if my sodium or potassium Levels were abnormal. it's different for everyone tho!
1982 - born with one imperfect kidney, no bladder
1984 - urostomy op
1990 - bladder built out of colon op
2007 - birth son, gfr drop 30% to 26%
July2011 - birth prem daughter, gfr 17%
August2011 - gfr 10%
Now - gfr 8.8% transplant from dad 29th May2012!
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Joined: Thu Mar 29, 2012 5:42 pm

Re: How low can you go?

Postby Getting_stronger » Thu Oct 06, 2016 7:00 am

Hi. I have just joined KPG after being admted into Fairfield General in GM with suspect DVT leg and ancle swelling after being diagnosed previously with Reial Failure to discover my GFR is 10. Although I feel comleteley normal. I'm a bit fed up as was going on a rock n roll weekender my hobby that I actively participate rock n roll swing type dancing. Which they say doing for an hour is like circuit running for 5 miles and I dance for 4 hours then with an GFR of I thought 17.
So today after an usual night of no sleep and anemia I'm having an ultra sound scan. I kind of feel a bit better after reading that other folk on here are at the same level as me and some even lower, but still a bit anxious.
Thanks for reading. Any comments appreciated.
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Joined: Thu Oct 06, 2016 6:40 am

Re: How low can you go?

Postby rheaybou » Thu Oct 06, 2016 12:09 pm

What you will find is that with a steady decline in renal function is that you don't feel becomes your natural normal level.

Keeping fit and healthy in the past will no doubt help you as you move forward to possible dialysis and transplant, I have no doubt that being fit before starting dialysis saved my life. Keep enjoying your life and don't let renal failure beat you !
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

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Location: Doncaster

Re: How low can you go?

Postby ibby » Fri Oct 14, 2016 10:24 am

I can certainly confirm rheaybou's take on the steady decline. I was diagnosed with Alports Syndrome in Feb 2015 with an eGFR of 9 and a Creatinine level at around 600. I was generally feeling well and only had my blood tests done because I thought I had some kind of infection at the time...

Since there didn't seem to be any effects from my failing kidneys, I didn't start PD until I had an eGFR hovering around 4-5 and a Creatinine at 1600. The numbers were very alarming, but apart from feeling tired in the day, I was still active. I only started PD because my Renal Consultant told me that the Creatinine levels were dangerous and it could start affecting my mental capacity.

So I guess the true answer is, it depends on the individual. If you're generally feeling ok then you could probably go on with dialysis. But it's your choice and I would recommend heeding the advice of your doctors because they know what they're doing. At the end of the day, it's your body and you know it best especially with how you're feeling so as long as you stay logical and listen to advice, you should be fine.
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Re: How low can you go?

Postby UF2.0 » Thu Jul 11, 2019 11:58 pm

Diagnosed with end stage kidney failure at age 17 in 1991. I had felt awful for at least 2 years prior to diagnosis. I was so tired, exhausted, very swollen up, my entire appearance had changed from a lovely little girl to a big bloated girl, my weight ballooned to over 3 stone of fluid. I was breathless, itching and being sick after meals. My periods had stopped by this stage even though they had never been normal and by age 15 had turned brown.
I was terrified and believed I had cancer and when I was finally diagnosed with kidney failure at 17 I was naively very happy!
26 years later I have my kidney.
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Joined: Thu Jul 11, 2019 11:38 pm

Re: How low can you go?

Postby UF2.0 » Fri Jul 12, 2019 12:00 am

A seriously under estimated horrific disease that is mis understood.
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Re: How low can you go?

Postby UF2.0 » Fri Jul 12, 2019 12:04 am

I read accounts of people with end stage kidney failure and they don't feel any different or they feel fine etc.
This baffles me so much I just cannot understand it as I felt so awful.
I do understand that people don't realise. Wow.
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Joined: Thu Jul 11, 2019 11:38 pm


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