different GFR numbers??

[tyefly]

I am concerned about the different GFR numbers that I have had..... last year 3-08 I was at 79 then Feb 09 I was at 18 (had biopsy) then Mar 09 I was at 24 April I was 21 now just got my test back and I am at 19....... The question is is this normal to have different GFR numbers do they go up and down like this...my bun levels go up and down to just like the GFR numbers..... My protein in my urine is the only number that show constanst increasing numbers which is now up to 1560 mg/dl If they dont start you on treatment untill you are a certain number what happens if I am at a number and then the next test is different.... how does or will medicare deal with this.......LOL

[RichardMEL]

yes GFR calculations can vary by a little bit based on your specific lab numbers at any one time going 18 - 24 - 21 - 19 is pretty stable around the 20 mark I would say. The GFR is just a guide really. It is common for it to fluctuate a bit around that range. I experienced something similar.

[Rerun]

Depending on how you feel they will probably start you around 10 GFR. 

If you are feeling nauseated, dizzy, itchy then they may start you sooner.

[tyefly]

I really dont want to start at all....but I dont want to get really toxic and hurt my other organs either....   Yes I am ichy and am trying not to scrach my self....the sore dont heal very fast anymore....  its the anemia   and the ademia   that bothers me the most....  feeling tired, and when I do go out and do things  I get out of breath.....  like a old lady ......lol.... smoker or something....  but its the swelling ,,face, legs, feet.... belly  everywhere.....   I have gained 16 lbs this week..... I have lasix  and I take that each day but for the past couple of months  it has not been working..  I use to urinate alot after I took the pills.... but now I dont really go...that much.... I am going to increase it dosage and see what happens....  I am taking 3  40 mg per day.... I am not even sure if I should take more.... I dont eat salt... in fact   I really dont want to eat anything...  this is a good way to loose some weight.....  but I dont   I just gain it in water....

[Rerun]

Lasix only works of the kidneys are working.  If you have gained 16 pounds this week you need to call your doc.  It is very hard on your heart to push that much extra fluid around.  If you are having a hard time breathing you need to get in right away.  They may put in a temporary catheter in your chest for immediate dialysis.  Don't be scared.  We've all had them. 

                                             

[RichardMEL]

I agree with Rerun - you need to take note of these symptoms and tell the medical staff. Just because your GFR says one thing your body is telling you something else. I would be worried about the fluid gain that isn't being passed, and the effect on your organs and your other symptoms are classic - the itchiness is probably caused by a too high phosphate count, and well you know what causes the other stuff.

Heck NOBODY wants to start dialysis, but you may have to start sooner than you think.. or at least go onto meds like phosphate binders and some form of EPO for your anaemia (if you're not already).

Don't delay - talk to your neph about this stuff! It could be important!!

[Ken Shelmerdine]

I would say you need to start dialysis quickly before you get to a stage which is irreversible. I'm not trying to cause you panic and the thought of dialysis is terrifying but from what you've described you must dialyse before you get to a crisis management situation.

[tyefly]

thx for the replys.....  my phosphorus has been ranging from 3.8 to 5   and the pot has been ranging from  3.4 to 4.9 with both increasing over the past few months.... hemoglobin is 10.1   hematocrit is 30.4 and the RBC is 3.12..... These have decrease as well over the past few months....  As far as the water weight...  I weighied my self this morning and I loss 4 lbs the past few days.....  I took 3   40 mg lasix....  I still need more water weight off....  today I am going to take another 3..... The lasix just doesnt work like it use to ..... I use to pee and pee   and pee..... now  well   seems like it works slower....pee some and then pee alot later in the day..... LOL......  it not like drinking beer.......lol  ( which I dont do any more  LLOL)       Anyway....   my urine protein in up to 1340 mg/dl which doctor say is very high.....  I am not eating hardly anything.....and not even any meat...  just doest sound good to me any more... I do drink a glass of milk every day....  I hope that this protein is not coming from my own muscles........I see the doctor tomorrow with more blood test......  guess we will take a look at those.....     And just think    last year at in Mar  my GFR was 79 and all other blood work was normal.......go figure....

[jbeany]

I have to agree with everyone else - it sounds like it's time to seriously consider starting.  The labs are just guidelines.  There is no hard and fast rule about what your numbers have to be at when you start.  Some people feel fine with very little function.  Some don't.  If you are retaining that much fluid, though, it is time to get serious.  You are damaging your heart.  The muscles are being stretched out like a rubber balloon to accommodate the extra fluid.  If you don't get the fluid removed, the damage just gets worse and worse.

[tyefly]

I got my blood work back and Now I am down to GFR 15 and just a month ago  I was at 21....  my hemogolbin in up to 12 so my Doctor (Neph) says I sould not be sick or tired....  I am still sick and tired... my other doctor (primary) started me on vitamin B12 shots  wants me to start giving my self shots once a week... and tells me that i am loosing feeling in my feet... I think he is right.....compared to last year... I felt alot more than this time when tested....  Neph Doctor says that she will refer me to a transplant class   I have kaiser    I have no idea what that is .....    Should I be getting a fistula now  or do I wait unitll I am either rule in or out for a transplant....Hubby wants to give me one of his kidneys.... but they said I have to do the trans class first and then find out if I can even have a transplant.....    Neph doctor is starting me on another water pill ..... she says this one should do the job  but want to check me in a week or so......I hope it does  as in a week I could gain alot of water weight...

[RichardMEL]

It worries me that your neph says you shouldn't be "sick or tired" but you say you are. I got the impression from what you wrote that the neph has dismissed that??? WHY?? It's your body just because the numbers say one thing.. that's just part of the story!! Your body is telling you what is up by feeling sick and tired... just because the numbers say you "shouldn't" - that's just a stupid thing anyway because everyone's different and the numbers are just a guide. Perhaps I read something into your post that wasn't there but that alone worries me.

In some ways I see the dilema about getting a fistula worked up given how you are feeling and the rate your function seems to be falling (have they done a 24 hour urine test? that will give a better idea of the function level) vs a transplant work up which may bypass the need for dialysis. Definitely discuss it with your neph because getting a fistula sooner rather than later is always a smart idea so it has time to mature even if you don't use it for a year (and hopefully never if you can get a kidney from your hubby).

good luck.

[tyefly]

I have not done a 24 hr urine...but I have done three spot urines which they say works about the same....  my first two months ago was protein was 1240  then 1360 and now its 1790 and my creatinine urine was 97  and then 130 and now it 210....   Doctor says I am spilliing alot of protein..... I hardly eat anything....      I think she cant believe that my numbers are going down so fast and she thinks that they may be down so low because of the fluid that I have and that I need to take the fluid off....  she thinks maybe the lasix is causing my to have low numbers,,,,but the lasix is not working very well...  not like it use to.... I dont go to the bathroom much...   Maybe I should measure what I drink and measure why I expell for a few days...... 

[monrein]

I'm just echoing others when I say that it really sounds as though you need to start D soon.   

[kellyt]

You might also want to consider a new Nephrologist?   Maybe?   

I hope that's not the case.  If you feel she dismisses your feelings of being "sick and tired" then please consider it.  This is YOUR life.  Remember that everyone feels different and the different stages of this disease.  My GFR was at 7 when I transplanted and I was doing quite well overall.  Tired due to low iron, but otherwise doing well.  Both my potassium and Phosphorus levels were high (just above the range) and my creatinine was at 5.7 (but was as high as 8 over the summer).

Take care of yourself!   Keep us informed.

[tyefly]

Thx for all the comments......  I do feel bad....somedays worst than others....seems like when my weight goes up due to too much fluid and then I will take a bunch of lasix and I will get rid of some of the fluid... my blood pressure goes thur the roof when I retain too much water..... I am thinking that I should not drink anything.....  or maybe reduce the fluid level down to just a glass ..... maybe this will help.... I am pretty thirsty at times....this stuff is really crazy.....  tomorrow I am going to a pre kinny class.... this class is suppose to teach me how to eat to save my kidney function...  then I have to go to learn how to give myself vitamin B12 shots.....  The needles that they gave me look really  really long.... and I hear you have to put into muscle.....  I am wondering how I will deal with that ..... I am not afraid of needles but then someone else has been doing that...... I have a hard time sometimes just poking my finger to check my blood.... I hate pain.....  you all are so brave...  Sometimes I think I am not going to do well with all of this and I think that I really need to get my affairs in order........

[Wenchie58]

tyefly..
 Take a breath and you'll get through it.  I never thought I would be able to inject myself with anything, but after the first jab it's no biggie.  In the past 6 months I have done insulin, B12 and Arenesp injections...not a problem.  I groan about it, but it's over so fast.  Now.....sticking myself for dialysis...ehhhh I dunno, but if ever put in that situation I'm sure I would fumble through that too. 
  My doc told me a couple of years ago it was time to "get my affairs in order"...she didnt know me very well...."order" doesn't fit into my agenda. 

[tyefly]

Ok   I did it   .... I gave my self my first shot of vit B12......  WAS NOT A PROBLEM.......  boy I sure make a big deal out of things in my mind....  I thought it was really going to hurt and I could not even think that I would be able to do it....  Heck   giving myself a poke to test for blood sugar makes be nervous.....  but  Hey   that hurts   and the skinny needle that I used for the b12   was no pain... I love it....  I wish now that I had one of those needles that would hurt so much..... hey  maybe I should start testing on my leg..... maybe its my fingers that hurt.......   now thats a thought....
    I am going to the next class to get info on the access points.... hemo and Pd.... and also to a transplant class.....  the end of this month I am getting my belly botton hernia fixed again.....  heck that is how I found out about all this kidney stuff.... I simple wanted to go in and get the hernia repaired and my blood work came out funny ..... in Feb this year.... so now that I know I am headed to transplant or dailysis....  I thought I better get my hernia repaired..... tired of looking pregant.....LOL....