Creatinine level down and GFR increase--any experience?

[malaka]

Recent blood tests (from the same lab always used) showed creatinine level at 3.3 instead of 3.7, with appropriate increase in GFR from 17 to 21.  No new drugs except Norvasc generic.  Still lots of protein in urine (652 of whatever units are used) but ,my question is has anybody been through the down and up cycle before?  I don't feel any different, of course, but my nephro offers no insight into my future except "we'll see--you don't need  dialysis now."

(You should all get your labs -- while most of the acronyms and results mean nothing alone, just count up the number of abnormal findings.  Kind of gives you the idea that yes, you are sick.

[MooseMom]

Oh, sure.  I've been keeping my labs for 7 years now, and my creatinine and egfr have bounced around.  Remember that each lab result is just a photo of that moment on that day that your blood was sampled.  I remember once I had my worst results ever, and the very next set of labs showed my BEST results ever.  What you and your neph should be looking for are trends.

Once my egfr dipped below 20 and my creatinine rose above 3, however, I knew it was time to get my fistula created and to start the pre-transplant party.

[Willis]

My neph told me once that the blood test for creatinine is very time sensitive. If the lab lets it sit around too long then the reading may be higher. Whenever I had a result that seemed too high for the trend, my neph would resubmit a sample and specify "no charge" and "stat" and invariably the result came back within trend.

 

[okarol]

Jenna's situation is a little different as she has a transplant. Her creatinine is lower today: 3.15 with a GFR of 20 - this is the lowest creatinine and highest GFR since her rejection episode 18 months ago. By comparison, last month her creatinine was 3.48, GFR 17.

Her transplanted kidney is still working and given the trends they have seen, the neph said it's possible to get a few more years from it. She is still on very low doses of immunosuppressants.

I know the lab values fluctuate depending on how much fluid she drinks and how active she is. And the doc says you could take labs 3 days in a row and get different results, so its the average value over several months that they look at.

[paris]

I get labs every 2 weeks, 9 months post transplant.  The correlation between my fluid intake and creatinine has been amazing to watch.  I am fascinated with the lab results even more than pre transplant.     We live and breath for our labs, don't we?

[malaka]

Thanks.  I wasn't thinking I was one of the lucky 1/3 who spontaneously remit, but the less-than-one-month improvement was a puzzle to me. I can see, in retrospect, that kidney function must vary as docs are always changing Coumadin and insulin doses despite fairly steady diet, activity and water intake.  While borderline, I'm happy to be staying on the "no dialysis" side of the border.  Next month, who knows? 

[MooseMom]

While borderline, I'm happy to be staying on the "no dialysis" side of the border.  Next month, who knows?

Exactly.  I used to really flip out seeing my egfr and creatinine numbers, but now I realize that it's not worth the aggro as long as the numbers are good enough to keep me off dialysis for a couple more months.  I now tend to pay more attention to phosphorus, potassium and hemoglobin, etc numbers.  I can't do a lot about egfr and creatinine, but I CAN do something about phos, K and anemia if those values are way out of line.  And so can you..

[kristina]

Hello, malaka,

I have been on a kidney function of 10-12% for over two years now.

It always fluctuates between 10% and 12%, except last month,
when it was a little better with 12.3%, which is exactly the same
as it was three years ago on 2nd May 2008. I am very excited about it,
because it seems to indicate my diet is working for me.

I don’t seem to be able to effect a positive change in my Urea- (Bun) level.

I would like to lower my Urea- (Bun) level, but I haven’t found a way of doing so yet.
I have only read that drinking more water and more exercising could lower it.

Like yourself and MooseMom I do as much as I can about my (vegetarian) diet,
to keep Potassium, Sodium etc. regulated without any medicines for it,
and I do hope, I can keep myself pre-Dialysis for as long as possible.

Good luck and best wishes from Kristina.

[malaka]

Nephro visit today.  Referral to vascular surgeron for fistula.  Tell me about it.  Procedure?  Recovery?  Limitations?  GFR at 19, so I don't need it yet, but he suggested it in case I do since I've exhausted
reasonable therapies.

Thanks for any information, tips, cautions, etc.

[MooseMom]

Nephro visit today.  Referral to vascular surgeron for fistula.  Tell me about it.  Procedure?  Recovery?  Limitations?  GFR at 19, so I don't need it yet, but he suggested it in case I do since I've exhausted
reasonable therapies.

Thanks for any information, tips, cautions, etc.

What I will tell you here is just my experience for your guidance.  Every patient and every fistula is a bit different.

Your vascular surgeon will map your arm to find the best place for your fistula.  Many people will tell you that it's best to have your fistula placed in the wrist area so that if it should fail, you can have another created further up the arm.  But for a fair number of patients, particularly those who may be of smaller stature, the veins further up the arm might be more suitable.  That's where my fistula is.  The surgeon will do an ultrasound to find the best place for YOUR access.

(You may want to check the credentials of the surgeon.  Once you meet with him/her, don't be afraid to ask about his experience.  This is an important surgery that has long lasting consequences, so you want someone who knows what he/she is doing.)

Once it is decided what sort of fistula is best for you, get some information on what kind it is (ie, which vein/artery will be joined) and do some research on it.  Just google it, and you can read about how exactly it will work.  That might be too much information for you (I didn't do this and still don't know exactly which vein is connect it to which artery, but once I find out, I'm gonna learn more about it), but if you are so inclined, there are all sorts of articles online about AV fistulas.

You can also look at www.fistulafirst.org for more really good information.

As for the procedure, well, you'll be knocked out to some degree.  I asked for full sedation as I really just didn't want to know.  Others have a shoulder block.  I'm a weenie.

Afterwards, you will be given instructions about how to care for your fistula, how to keep it safe and how to strengthen it.  You have to be careful to specifically protect the area where the vein joins the artery.

I experienced some numbness in my arm along with all sorts of lightning-like sensations.  It was very weird, and I freaked out about it from time to time.  But I was assured that this was normal, so I just lived with it.  As with any surgery, as time goes on, post-op discomfort wanes.  You will hopefully begin feeling the higher volume of blood flowing, and as bizarre as that feels, it means that things are going well.

It is terrific that you are giving yourself time for your fistula to mature before you will probably need it.  Mine is well over a year old; I've not had to use it yet, but I know it is ready to go when I do.  I wanted to avoid a cath at all costs.

Keep us posted on what your surgeon has to say, OK?  Just make sure you have faith in his/her abilities and experience.

[Willis]

Nephro visit today.  Referral to vascular surgeron for fistula.  Tell me about it.  Procedure?  Recovery?  Limitations?  GFR at 19, so I don't need it yet, but he suggested it in case I do since I've exhausted
reasonable therapies.

Thanks for any information, tips, cautions, etc.

Even though I chose PD, I did get the AV fistula. I had the surgery one day under general anesthesia and was up on my feet exercising the next day and back to work the day after that.. I didn't find it a problem at all. They do make a substantial incision that for me took about three months to heal completely, but after about a week I was able to remove the bandage for good. Make sure to get the fistula on your NON-dominant arm if at all possible, i.e., I'm right-handed so I got it on my upper left arm. The vascular surgeon may want the arm that is easiest for HIM, but unless there is something seriously wrong with your non-dominant arm be insistent. It's your arm!

I found the fistula surgery a piece-of-cake compared to the PD surgery for a catheter. I had that on May 10th this year and it's still not completely healed. I was in MUCH pain for more than a week and couldn't do much of anything (including work) for more than two weeks after the surgery.

 

[okarol]

Have you been evaluated for a transplant? Once your GFR is below 20 you can be wait listed. Has anyone discussed this with you? Even if you don't have a family donor you could still get a deceased donor kidney,

[malaka]

That evaluation is next. Probably at the facility where my"second opinion" practices from as they do lots of transplants there.  My problem with family donors is that nobody knows what causes membranous nephritis (my disease) but recent research is pointing to a genetic component.  With that uncertainty, I'm not too wild about the idea of getting a kidney from one of my kids and 20 years from now the kid ends up with the condition and it progresses rapidly since that kid only has one kidney.   My nephro really had no answer to that concern except to agree that it was a valid concern.  Since I'm 58 years old and working for myself (but not controlling my own schedule) dialysis will probably mean retirement / SSD until I'm 62; and Medicare whatever that will be in the future. The local wait list is about 4 years long, so....... que sera', sera'.

I'm going to inquire into PD, but I've had two abdominal surgeries in the past, so I may not be a prime candidate due to scarring, adhesions, etc. 

[malaka]

One more thing.  Moosemom--they are REALLY worried about you in the "family" section.  You might want to let the numerous "inquiring minds" over there know you are alive, well, and kickin'.   

[malaka]

Going for transplant evaluation October 4.  Strangely, in two months, creatinine has gone from 4.5 to 3.8.  No new meds, no new diet.  So I'm sort of out of the danger zone which is a good thing since my AV fistula needs some work. 

[Deanne]

Good news all around! 

I hope your evaluation goes smoothly. I thought mine was pretty simple. It was a day & a half of "stuff." A class, meeting with dietitian, social worker, surgeon, EKG, ultrasound, x-ray, blood draw, and vaccines. Then a couple of additional appointments for another small blood draw, more vaccines, and another scan because the ultrasound picked up some cysts that needed a closer look.

[kellyt]

Before transplant (never on D) my creatine level would fluctuate all the time, but mostly it would find a level and stay there for months and months.  I remember being at 2.7 for years.  I was diagnosed in 93 or 94 and I transplanted in late 2008, but my creatining didn't get into the 3's until probably 2004 or 2005.  I never discussed my GFR with my neph until 2007 when I was testing to get on the list.  I hope you can avoid D for as long as possible!