Transplant Patient advice on Glofil

[rimbo74]

I just had my 3 month Glofil test done.

My first test - 1 month I had a creatinine of 1.5 and kidney function of 102%.

Today - 3 months my creatinine was 1.8 and kidney function is 81%.

To me these numbers look like they are sliding and sliding fast.  If you have had a Glofil test done, what kind of numbers are you getting?  I was on a schedule of going every two to three weeks.  Now I'm having to go on a weekly basis again.  Should I be concerned?

[Sluff]

I just had my 3 month Glofil test done.

My first test - 1 month I had a creatinine of 1.5 and kidney function of 102%.

Today - 3 months my creatinine was 1.8 and kidney function is 81%.

To me these numbers look like they are sliding and sliding fast.  If you have had a Glofil test done, what kind of numbers are you getting?  I was on a schedule of going every two to three weeks.  Now I'm having to go on a weekly basis again.  Should I be concerned?

Rimbo I agree with your assessment but don't those numbers move up and down all the time? I'm not sure or familiar with Glofil Testing.

[stauffenberg]

Even in the absence of immunological rejection, all transplanted kidneys suffer from chronic allograft nephropathy, which is a long name for the medical profession saying that the renal function declines and they don't know why it happens.  Various theories to explain why a kidney which, if it stayed with the donor body, should have lasted for ten, twenty, or sixty years, for some reason only lasts for about twenty years maximum after transplantation have been discussed in the medical literature.  Some say that a protein restriction diet helps slow the decline in function; others say lower blood lipid levels help; others point to the importance of maintaining normal blood pressure; and still others blame it all on the toxic effect of the immunosuppressive drugs -- but no one is certain about what to do.

Normal renal function should produce a creatinine value of 0.8 to 1.2.  Perhaps you should discuss with your transplant follow up team whether a protein restriction diet (0.7 gms of protein per kilogram of body weight per day) or switching to some other combination of immunosuppressive drugs is indicated to slow the decline in function.

[waitlisted]

Rimbo, what do the doctors in DTI say about the change? Clearly they have some concern, if they changed you back to weekly visits. Just ask them if you haven't asked yet, they have been very good in explaining all to me if I just ask all the questions, which I always have plenty...

Has your creatinine been stable during last months or has it been raising slowly?

If you have been exercising, your creatinine will increase, but the Glofil should not change. That's what I was told.

I am just about to go to my 1 month test within next week.

[Roxy]

For me, it has changed back and forth a few times, just because the creatinine goes up and down a little. I think it takes a while until it completely stabilizes. A few things to consider are if your medication levels are accurate, if you are hydrated enough ( you can tell this by your BUN), and like waitlisted said if you are exercising.

[Chris]

What's a Glofil test? Never heard of it, but with my experiences with my transplant center, I don' trust them with giving information out or doing the necessary test.

[angela515]

Never heard of that test, but I trust my transplant with every bit of information I get from them. They have always been trustworthy and reliable to me and there for me 24/7. So if you trust yours... ASK. 

[rimbo74]

I have been excerising tons.  I'm training for a 5K in December and I also lift weights now and ride my mountain bike on nice weekends.  My creatinine was stable for a couple months around 1.4-1.5.  Lately it has jumped up and down to 1.8.  The Glofil test is what surprised me the most, going from 102% to 81%.  My BUN is in normal range.  I was probably dehydrated but who knows.  Guess I'll find out on Tuesday.

[okarol]

Jenna has never had a Glofil test. I had never heard of it either so I had to look it up:

An I-125 Glofil (GFR) test is a blood test that measures the Glomerular Filtration Rate of the kidneys. More simply, this is a test that measures kidney function.

This test requires an injection of a radiopharmaceutical, as well as blood samples taken, through an IV catheter. There are no images or pictures taken during this study.

Glofil is the trade name for a substance called 125-I sodium iothalamate. The name was derived from "glomerular filtration," which is a function of the kidneys. The kidneys' major job is to remove toxic waste products from the body. Blood passes through the kidneys and is continuously cleaned and purified. Each kidney contains approximately one million tiny filters called glomeruli. These microscopic filters work by sieving blood, retaining things that the body needs (such as blood cells and protein molecules), and discarding substances that are not needed, such as waste products that accumulate after processing of food. The waste products that are filtered out ultimately make up a large portion of the urine that is excreted from the body.

One way of measuring how well the kidneys work is to give a person a substance that gets filtered out by the glomeruli and excreted in the urine. Glofil is one such substance. It is administered intravenously, and its disappearance from the bloodstream is carefully measured and quantified. Because Glofil contains a tiny amount of radioactivity, the amount of it remaining in the blood can easily be determined by measuring the radioactivity in the body repeatedly over a period of time (usually several hours). The rate at which Glofil disappears allows us to calculate the rate at which glomeruli are filtering it out of the bloodstream, and thus to determine how well the kidneys are working. The amount of radioactivity in a typical dose of Glofil is less than that in a single chest x-ray.

[Chris]

I can honestly say that I have never had that one done.

[Jill D.]

I have never heard of the test nor had it either. If you are excercising that much Rimbo, that could be why your creatinine level is elevated. I also know protein levels in urine will also rise with physical activity.
I think the 81% function is actually excellent. I've only been slightly over 50% function after my transplant. When I asked about it - and whether my sister's function would be that low, I was told it was normal for me, but that my sister's function was probably back up to 100%. That is because her remaining kidney is very healthy and has probably taken over full function, but that the kidney she donated to me, while very healthy, goes through trauma during the transplant process.

[Romona]

I was told that it is hard to get an accurate measure of kidney function for a transplant. Normal limits for a transplant and for the general population is different.

[lola]

Otto stopped having his creatine checked on Mondays if he had been riding all weekend because they said it would go up since he was sweating to much.