Posted 08 September 2011 - 02:28 PM
I was talking with a lady yesterday and she was telling me about her renal figures. I was gob smacked and totally amazed and even a tad excited but since then I have thought about it and it is so opposite to all that I thought I knew about renal failure that I figured before I get excited I need some feedback from you girls to see what you think.
I want to believe it all but as I said it just is so opposite to all that I have known and experienced. If there is some truth to it then I have cause to be excited if not then I need to back up some.
My granular filtration rate (GFR) is 25 and I am already symptomatic with all that comes with stage 4 renal failure. I can't do either kind of dialysis and don't qualify for transplant, hence palliative care. This lady told me she was diagnosed at age 14 with kidney failure and had GFR at 25 and lived normally with that until 4 years ago. She is now 41 years old and even had two pregnancies in that time. She said for the past 9 years she has been in end stage renal failure (ESRF) with a GFR of around 10/12. She said she had a fistula built 4 years ago and so far has not needed to use it. She said she is symptom-free except for fatigue. She drinks 3 liters of fluid a day and still works but is in end stage renal failure with GFR 10/12.
After I got over the shock I started to get excited thinking perhaps I do have hope if she can be in ESRF with 10/12 GFR and drink 3 liters of water (with no vomiting either), good blood pressure, and working, and no dialysis at all.
Has anyone heard of this before? Everyone I have met prior to this when in ESRF are just so very sic. If you don't get dialysis, it's the end! But this lady is doing so well, have I got it wrong and it is possible to live well even in ESRF with 10/12 GFR. Should I raise my hopes for a better outcome with such news or should I be suspicious?
I feel guilty questioning her figures as she is such a nice person and I want so desperately to believe her as that does raise my hope. But all that she said goes against all that I thought I knew. If I drank 3 liters of water a day my blood pressure would be so high it would blow my brains out! I'd have constant nausea and brain fog.
I reek of urea can even taste it in my mouth and itchy skin and my GFR is just 25 shes 10/12 and fine?
I am so so so confused. I want to believe her but I'm scared to. I'd really appreciate some input.
Posted 08 September 2011 - 03:55 PM
I'm sorry you're in Stage 4 Kidney Failure and send my best wishes to you.
Please keep in mind that I have no medical training at all, and that Miocean will be a better resource for you than I am, most certainly.
All I can share is some general information, which hopefully isn't too far afield from actual facts.
As I understand it, we are all given a ton of extra lung and kidney capacity, in fact we only need about 10% of functioning capacity of each in order to stay alive. Therefore up to 90% of our lungs or kidneys can be destroyed (from whatever) and we can still function (however with lungs that would probably require supplemental oxygen above that mark.)
But very generally speaking, most people don't start dialysis until they are at 10% or less (I've heard of some people starting dialysis at 7 or 8, for example.) So right now you aren't eligible for dialysis or transplant, simply because your kidney function hasn't declined to the levels that require it -- yet. Interestingly, kidneys (and lungs) can stabilize or even improve a bit at any stage of systemic scleroderma. The natural course of the disease is to worsen -- and then improve. Many times the disease just "burns out" after awhile and existing damage might be left but things quit getting any worse and sometimes people get better -- and sometimes, an awful lot better.
It would not be terribly unusual therefore if you stayed at this general level for many years, perhaps even forever. Not everyone always continues to progress to Stage 5. Of course, the good news is that if or when you hit Stage 5, you'd be eligible for dialysis or transplant and those treatments might make you feel a lot better than you do now. Look at Miocean for example, there's hardly any stopping her now and she's a great example of a light at the end of the tunnel.
Also, the way they calculate GFR can be misleading. It's not necessarily comparing apples to apples that you are doing rather poorly and she is doing considerably better even at a lower GFR. For example, she may not also have scleroderma and even if she does, she may not have it as severely as you do or with the same set of symptoms or length of illness. Age and weight even affect the GFR numbers so unless you are both the same weight and the same age with the same illness, odds are it is not an entirely fair comparison.
Some health habits might help you retain what you can of your kidney function, for as long as possible. Such as avoiding NSAIDs, exercising regularly (as much as you can get away with, at least), eating within kidney care guidelines, and reviewing all your meds for potential bad effects on your kidneys. Those things might also reduce your symptoms even if they don't change your GFR.
It sounds to me like what she reported is possible, yes. However, your own experience might be different than hers, for better or for worse. What's that line someone around here always uses? Ah yes, "It is what it is." That line confounded me for the longest time, but I think I sort of get it, now.
Here are some warm hugs for you, which are guaranteed not to hurt your kidneys in any way whatsoever.
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099
The most important thing in the world to know about scleroderma is sclero.org.
Posted 08 September 2011 - 03:57 PM
GFR stands for glomerular filtration rate, according to Medline Plus:
Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working. Specifically, it estimates how much blood passes through the tiny filters in the kidneys, called glomeruli, each minute.
Have a look at the full article because it gives some details about what falls into normal and abnormal ranges.
What I can tell you is that anything seems to be possible with scleroderma, I have a friend who had a renal crisis at year 3, her family were told to say there farewells whilst she had fits and all the rest. Well 25 years on and she is still alive and kicking, she was on peritoneal dialysis for many years but isn't anymore!
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 08 September 2011 - 03:57 PM
I can understand your apprehensive excitement, and trying to keep a lid on it.
Of course you realise anything we can say is purely on a lay persons perspective. Like you we are mystified by the different ways people react to their condition, as there is so many people who react differently to medications.
Let's see what the others have to say. I will be watching the replies and hope there is some good news for you there.
Will keep posted with great interest
Posted 18 September 2011 - 03:19 PM
At a GFR of 25 you are doing pretty well. My GFR after transplant is 45. It is my understanding that until it drops to 15 there is no need for dialysis. I go to a support group for Dialysis/Transplant candidates and there are several people with diabetes who are holding steady with a GRF like yours.
My nephrologist told me that he pays more attention to the creatine level than GRF for me as a post transplant patient. Mine has been averaging 1.2-1.3. It as 8 when I was on dialysis. Just recently went it jumped to 1.6 , back down then back up to 1.5 again. I had a biopsy and thankfully everything was fine.
I am wishing you the best and always keep asking questions. What is your creatine? Are you spilling protein? Do you have edema? Is your urine foamy?
Keep your spirits up!
Also tagged with one or more of these keywords: scleroderma renal failure, dialysis, kidney transplant
Sclero Forums (MAIN) →