if you feel tired at 20 GFR...?

[Psim]

I'm pre-dialysis and feel fine when my GFR is over 25, but very foggy and tired when it dips down to 22. In another thread I read that dialysis keeps you at about 15% function. Is that the same as 15 GFR?

Does that mean that I will feel this tired all the time on dialysis? I'd love to hear from other people who felt tired at 20 GFR -- is dialysis able to keep you more clear-headed, or do you just feel foggy all the time? I know I can deal with whatever I have to, but it would be good to know.

[stauffenberg]

The GFR is expressed as a percentage of what would be the normal clearance rate per minute for a person of your gender and body surface area.  For males it is 70 mL per minute per square meter of body surface; for females it is 60 mL.  There are a wide variety of ways to measure renal function, including GFR, creatinine level, the quality of the urine multiplied by its volume, etc., so depending on which of these measures was adopted to determine that dialysis replaces only 15% of normal renal function, that value may not be directly comparable with your own GFR percentage.

With respect to the degree of exhaustion you can expect to experience on diaysis, the best answer is that experience varies greatly from one patient to the next.  Younger patients early in the course of their dialysis treatment with no co-morbidities tend to feel much more energetic than older, sicker, long-term veterans of dialysis.  Statistics show that of all dialysis patients in the working age group, only 30% continue working after starting dialysis. 

I had to quit work immediately on beginning dialysis and was not able to return to work until two weeks after a transplant. I was constantly sleepy and bone-weary for the first five years of dialysis, so I simply could not summon myself to do anything.  After five years, when my residual renal function ceased completely, I began to experience difficulty concentrating in addtion to the exhaustion.

[Psim]

Thanks Stauf. It's a pretty grim thing to look forward to, but still it's better to know beforehand and have a chance to adjust my attitude. I guess i better hope one of my live donors is a match (they say The List in BC is a 5 to 10 year wait and I'm type O...).

[Sunny]

Yikes, what a grim reality. I am pre-dialysis with creatinine 2.8. My energy is very low and I gave up work 3 yrs ago. I'd have to agree with you, it is better to know what to expect so we can learn to adjust our attitudes. It is easier to live with that way.

[lola]

ALL of Otto's brothers worked up until there transplants, everyone is diffrent

[staceyand joe92]

I am pre-dialysis also. I began feeling tired around GFR 18. I am now at 14.  My doctor still thinks it is too early for me to be having symptoms or to receive any type of treatment and tells me that  I'm tired because of my hectic lifestyle.

[Psim]

Stacyandjoe, I think your doctor is wrong. When I first started feeling tired, my neph said it was unusual for someone to get symptoms that early, but assured me that it does happen. Then when I asked here on IHD, quite a few people had similar experiences. You are not alone in this, and you're not making it up.

As for treatment, since starting dialysis is opening a huge can of worms, and may or may not improve the fatigue, I've decided to slow down and learn to live with the fatigue, and not start dialysis until my symptoms are unbearable. But this is a decision you and your neph should be making together. That's *YOU* and your neph -- do you feel like your doctor listens to you?

[kidney4traci]

Stacyandjoe - ask your neph if he has ever been a pt.  I love how they project their bs on you.  At 38, you probably do have a full life.  But diminished kidney function will wear you down.  Do listen to your body at those times and take it easy.   But at 14, you are going to feel the effects.  (Can you tell I don't like doctors?)

[KICKSTART]

Been doing capd for 3 yrs ..foggy and tired ..thats me !!

[paris]

I don't understand some doctors!  Of course you will feel side effects at under 20%!  Your body has toxins, you're probably anemic, poor appetite, vomiting, extreme fatigue----what is he thinking!  If you can be listed for a transplant at 20%, why wouldn't he think you would have symptoms?  Sorry--just makes me mad he is not helping you.  I have a very good relationship with my neph and together we will decide when to start dialysis. I am at 15%, with creatinine of 4 and trying to hold on at that level. He says he won't let me get in an emergency situation, and I trust him. In the meantime, he is helping me handle all my symptoms and I am learning to listen to my body.  I try not to push myself and rest as often as I need to. It is an adjustment and sometimes I really hate not being the person I use to be.   It does help for me to know that others feel this way and I am not making things up.

[staceyand joe92]

Thanks to all for the encouragement.  I do feel like sometimes my neph thought I was making it all up.  I was relieved to read on IHD that I was not crazy and that I was actually having real symptoms.  I will be moving to AZ (Tucson) area next month and I will be a little more selective with my neph this time.

[paris]

Now you are armed with so much information, you will beable to make a great choice in doctors when you move. Don't overwork yourself during the move. Stop and rest and be good to yourself

[kidney4traci]

My brother in law is a chiropractor in Tuscon - let me know if you need to look him up.  We almost moved there, it is a nice town.  Grown alot in the last 13 years since we were there I'm sure!

[kidney4traci]

I must ammend my last statement about doctors - that is I love my chiropractors!  (My husband included of course) That is the best doctor for me!   

[devon]

When I read the creatinine levels here, I get a bit anxious. My level last week was 5.7. Should I be more worried than I am? I try to keep up with work and take care of my kid and all that a single parent has to do. I thought THAT's why I was so exhausted!

In the lab last week, the tech said, "I have to draw blood again. These numbers are too high." She did and they were the same. She took them to the manager. The lab manager who knows my case said, "OH! Those aren't high. Those are Devon's!" I guess we're no longer shocked at the numbers any more. 

I have no clue what my GFR might be. If that's percent of kidney function, it's at about 12-14 percent at last calculation.

-Devon

[BASSMAN]

My 2 cents,

I live a perfectly normal life style and work.  My kidney function is at 27 percent and I feel it.  More tired some days than others and I have heartburn more frequently. 

[oleboy]

Watching the numbers is fine , but your body will start to tell you you are getting sicker,each of us is differnt what makes me tired may not you. My Neph told me I would tell him when I was ready for dialysis and I did after I reached GFR of 1o I slide down hill was pretty qiuck. Trust your self enough to know when you are ready and if your Neph dosn't understand time for a new Opinion from another Neph.

[skuch65]

My GFR is at 20 and I do feel the effects of it.  I deliver mail and on the houses that have all the steps or the walking relays that are on hills i am sucking for air.  Lunch time i'm like a zombie just totally tired. I am really beat when I get home at night.  I get dizzy,confused, and headaches.  Not to mention the god awful leg cramps at night I get them in my feet, calves, and my thighs.  Some times both legs at the same time my wife has learned a few more swear words.  My nephrologist  wants me to get an inside job as a clerk but I enjoy being outside.

[paddbear0000]

My GFR is 20 too. I feel very tired a lot. I sleep about 8 hours at night, then end up going back to bed after my husband leaves for work for a few more hours because I just can't stay awake. I also noticed a new problem last night. In class, I was standing for a good hour, watching a demonstration of a printing press. By the end of the first half hour, I was feeling very tired and weak. That's new for me. I used to be able to stand at my job last year for hours on end and be fine.

[lola]

I am pre-dialysis also. I began feeling tired around GFR 18. I am now at 14.  My doctor still thinks it is too early for me to be having symptoms or to receive any type of treatment and tells me that  I'm tired because of my hectic lifestyle.

Your Dr needs a 

[Bajanne]

When my kidney was failing (and I had no idea what was going on) my life was just fatigue.   I don't know how I made it from day to day.  Then when I started dialysis, I felt a bit better, but not just after the session.  Just after the session, I was totally lethargic and unable to do anything.  However, the last two years, I have felt better and better.  When I leave dialysis now, I am able to run down the steps to my car and then go straight to work and work for five hours and feel as fine as punch.

I am so glad that you will have to opportunity to have another neph.  Please go as an 'informed patient' as our vascular surgeon says that I am (and this is due to IHD!)