End Stage Kidney Disease Already?

[renalpenguin]

Wow, how crazy is this? My GFR goes from 30 to 20 in two weeks?! I'm doing everything right (taking my meds, following the diet) but it still happened. I knew it would probably be bad (I've felt terrible lately) but it's still a little shocking that my creatinine jumped from 2.7 to 3.2!!! In two weeks??

I go to my doctor today and I have no clue what will happen. I'm not afraid of dialysis or a transplant; while I'd like neither to ever happen, I'm ready if need be- my biggest question is what to push for. Should I ask to keep doing what I'm doing (same meds) and see if it improves (I was wondering if I just have a flu?) or should I ask about other pre-dialysis treatment options (anyone know anything about plasmapheresis- I'm not sure if that's the spelling, but I heard it can keep some FSGS patients off dialysis for a while). Or should I go ahead and get on a transplant list/get a fistula in place in case I need to go on dialysis while I wait? (My doctor has said before, since I'm so young, we'll try to avoid dialysis altogether if possible- but with my kidneys failing so quickly, I think I may have to go on dialysis for a little while.)

I'm not sure what would be my best move- anyone have any ideas or suggestions? Thanks for any input- I'll let you know what happens later. 

[peleroja]

You said you had been feeling terrible lately.  Define terrible.  Did it really feel like the flu, or are you just trying to rationalize?  The bottom line is, the sicker you are when you finally go on dialysis, the longer it will take for you to feel relatively normal again.  My friend was so fluid overloaded when she finally went on dialysis that they had to dialyze her every day for two weeks!  I don't think you want that.  Have you considered PD?  A lot more flexibility on PD.  Even the transplant list will take you time to do all the pre-tests first, and who knows how long you have to be on the list (unless you have a living donor).  That's all I can come up with.  Hope some of it helps!

[renalpenguin]

Thanks for the input! The only reason I thought it was the flu was because I tested positive for it three weeks ago- sorry I guess I should have put that on my original post! Anyway, my doctor (of all people) keeps telling me "it's just the flu" and that sometimes the flu can drive up creatinine... but you're right, come to think of it, the flu shouldn't drop GFR by ten points! I haven't thought about PD- I think that would be a good idea. I'll ask about that. Thanks again!

[Goofy]

Just one word of advise from someone who has been fighting dialysis for a while now.............When you get to the point where you are eligible to get on the transplant list, do it. 

When I was first told I was eligible for the transplant list, I was in denial that I even had kidney disease! Finally when I got to that point that it was real I registered.  But if I had registered sooner, I would have more time in right now.

The sooner you get on the list, the more time you will accumulate on the list to put you closer to getting called.

People who have seen my posts, please don't laugh at me!!!  I'm the last person to tell someone what to do!!

[tyefly]

My GFR also went up and down in weeks....   but over all the trend was down.... I started dailysis when my GFR was 14 but had been down to 11... And my GFR went down from 33 down to 11 in just a few months ..... and I use to ask why.....  some people  last for years with low GFR... I guess iit is related to what caused your kidney to fail.... some fail from different things.....  I had a hard time deciding to start and to get a fistula and at the same time I was working on the transplant approval..... I just found out in April of this year.... and I have started dialysis a few weeks ago...  I wanted to wait for a transplant  but I really wasnt feeling that great....  now that I have started dialysis   I feel  really great.....  I havent felt like this in over a year.....   I guess I didnt know that i was really that sick.....

[texasstyle]

I'm certainly no expert on kidney disease as much husband has only been on dialysis for over 2 years now. I can when he first went to his Neph he was about 25-50% functioning. He was put on blood pressure meds to possibility ward off dialysis for a while. 6 months later he was on the dialysis. Please keep in mind that husband didn't care of himself either. He was very sick by the time they started dialysis. Once he started there was a big improvement at first. He does 2x a week but I feel he should be doing 3. In my mind I'm thinking that once the kidneys get near, or into end stage, it would be hard to keep them functioning to any degree for much longer. If you feel along with your Dr. that you are nearing dialysis I would certainly talk about getting a fistula in place. They take some time of healing before using. A temporary cath could be put in the chest if there is an emergency but it's best to not have to do that as it could increase your chance of infection.  You have a lot going on and I'm sure you feel overwhelmed. Talk with your Dr. about all your questions. Write them on paper if you need too. Also, my father at 78 got off Cellcept/pred ofter a year. It didn't help with the syndrome. His GFR last year was 47% and has gone lower (don't know the number). I see you were on these too. Did it help for any length of time? Thanks. Take a deep breath, one day at a time.

[lizabee]

Mine went downhill fast when it started to get bad.  I think the lower the GFR the quicker it goes....sorry!

[*kana*]

Are you taking Linsinipril by chance?  That will crash your kindney function once your renal functions starts to decline. 

Also the flu will dehydrate you and that will cause your labs to be worse. 

[RightSide]

My kidneys failed quite quickly.

I was first diagnosed with Chronic Kidney Disease, Stage III, in July 2008.
Four months later, by November 2008, I had progressed to Stage V (ESRD)--and I started dialysis.

[renalpenguin]

Thank you so much for your replies everyone! 

I talked to my doctor yesterday- he is going to call the transplant team to get me started on the transplant process. We're going to try to find a living donor (a lot of people I know want to be tested- I'm so thankful for people who are willing to do something so wonderful for me!)

In the mean time, I'm not going on dialysis yet... I feel extremely tired a lot, but my urine output is still decent and I'm managing okay. If my GFR drops to 15, I'll start temporary dialysis until I find a transplant.

Thanks again for everyone's kind words of advice! 

[silverhead]

Quote: I feel extremely tired a lot, but my urine output is still decent .

As the Kidney's fail, it is quite common for them to output urine in normal amounts, the problem is that the Kidneys are no longer filtering and concentrating the toxins, just removing fluid. Sharon was putting out so much that on the machine they were only removing the rinse back amount for over a year until her ureters finally scar tissued up so much that they blocked output and the Kidneys failed completely. You have to pay attention to the Creat and GFR (however unreliable and indicator) to know when to start....
Tom

[zona]

Kana, I got chills when I read what you said about Lisinopril! My gfr was at 30 when my neph. started me on it then crashed to 15 within days. Why would she prescribe this medicine to me ? I am so angry right now!

[Deanne]

Lisinopril is thought to have a protective influence on the kidneys to a point. I've been on it for years. My kidney function also took a downward spiral a few months ago and my potassium increased about a year ago, too. My neph started reducing my lisiinopril dose to try to keep the protective benefits while getting my potassium level and creatinine levels back in line. I was on a 40 mg dose and now on 2.5 mg. I'll find out tomorrow if I need to discontinue lisinorpril altogether.

I guess what I'm trying to say is that it doesn't mean you have a bad neph because you're on lisinopril. I think it's a pretty standard medication they use for us, but eventually the dose might need to be reduced or it might need to be eliminated, depending on your lab results.

[hurlock1]

Kana, I got chills when I read what you said about Lisinopril! My gfr was at 30 when my neph. started me on it then crashed to 15 within days. Why would she prescribe this medicine to me ? I am so angry right now!

There are all kinds of reasons for the kidneys to fail. I haven't been told, but I think that the reasons my kidneys failed was the excesses of my youth. I was on a blood pressure medicine for years called Lotrel. Since I have been on dialysis they changed to Lisinopril. Kidney failure is caused by genes and or wretched excesses. I knew a guy that had 1 bad kidney and got kicked in the other by a horse. The probability is that, through one reason or another, like it or not your kidneys are failing. No reason to get mad. There is no one to blame.  Lisinopril is the medicine that they give to patients with bad kidneys Half full, Half empty, it's your choice.