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Kidney Question


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#1 Margaret

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Posted 06 June 2007 - 03:08 PM

Hi Everyone,

Does anyone else have kidney problems with their sclero? I sat down with all of Gareth's blood work from the past year and jotted all the changes. One of the things that caught my attention was his GFR....glomerular filtration system. I was told normal was 60-100. Gareth's was 93 last Sept. and March but dropped to 83 this May. I have since read on the internet that normal is 120-125 and that below 90 is considered 'mild kidney failure'. I asked his rheumatologist about it and haven't gotten a response. His primary care physician said he would 'check into it' and hasn't gotten back. The two of them are so concerned about his weight loss and gastric issues. I know that Gareth had the positve Anti-RNA Polymerase 1/111 twice which is suppose to be an indicater of higher kidney invovlment with scleroderma. My inclination is to take him to a nephrologist on my own......am I being too anxious over nothing?

Take care, Everyone.
Margaret

#2 Sweet

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Posted 06 June 2007 - 04:04 PM

Hi Margaret,

I think if it would settle your mind about Gareth's problem, I would take him on your own to see a Neph. In my book you just can't be too careful. I'm also a firm believer in being your own health advocate.

Here is a link about kidney involvment for you.

Do keep us posted.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Guest_Sherrill_*

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Posted 06 June 2007 - 04:17 PM

Hi Margaret,

I have kidney failure caused by the sclero, and have been on dialysis since Dec. 2000.

Mine was discovered rather by accident in a routine blood test, and although I don't have the record of it, I think my GFR was about 15 or less, as I was put on dialysis about 6 months later. Dialysis is usually initiated at 15 or less.

My GFR 6 months ago was 1.72, and that's about my usual level now. I keep track of all my blood tests etc. on a spread sheet, and have the lab send them to me. The tests I now have for kidney function and dialysis adequacy are specialized, and mainly done only on dialysis patients. I note that in the margin beside my GFR results I have normal as more than 90.

So Gareth's readings are *slightly* low but I don't think enough to really worry about. My 90 year old mother has kidney problems with a GFR of about 28, which is not enough to start dialysis with, and I don't think she'd want that anyway!

But her doctor has her drinking as much fluid as she can, preferably 2 liters or more per day, as it makes the kidneys work better. The down side of course is that she is always in the bathroom! :(

Can you get Gareth to drink more? It doesn't have to be just water. Anything which isn't salty is good, like fruit juice, tea etc. I believe coffee is a diuretic, so maybe steer clear of that.

If kidneys are just *slightly* off it is often recommended that protein in the diet is reduced a bit, as it takes the load of processing this away from the kidneys.

I read recently that we lose about 1% of kidney function per year throughout our life, so I guess my mother isn't far out for her age! :P

If you can't stop worrying, I suggest you do see a nephrologist, though I tend to think at this stage they may say to just keep an eye on his tests. There are many further tests which can be done, but it is probably a bit previous yet.

If I can answer any more questions for you, please ask.

The ISN website has a page on Renal Failure, and also one, which I wrote, on Dialysis. This one has some pictures of my dialysis machine.

Warm hugs,

#4 Joe

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Posted 06 June 2007 - 07:17 PM

I have kidney involvement. Almost lost them about 10 months ago. Hands swelled up 2 months earlier and the Dr. didn't have a clue. I started throwing up for days. Thought I had the flu. Had jaundice and eyes turned yellow. Ended up in the ER with 250/160 BP and it just trashed my kidneys. Nearly had a heart attack. I think the fact that I used to run 3 miles, twice a week saved me there. I was in the step down unit for 3 weeks trying to get my BP under control. Lost 35 Lbs.

My creatinine level was 4.2 at it's worst. I was put on Altace, Benecar and Procardia. Altace, an ace inhibitor is the key drug to heal your kidneys after this kind of damage. My creatinine level is down to 1.7 now. Normal is .4 to 1.4 I think. If you have kidney involvement and are not on Altace, I would start some research and talk to a good Nefro.

I am limited to 4000mg of sodium per day and watch foods with high potassium and phosphates. Keeping your sodium, potassium and phosphates down for the rest of your life is key to survival. It stinks basically. Home cooking is a requirement at this stage.

Hope this helps you,

Joe

#5 Margaret

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Posted 07 June 2007 - 04:33 AM

Hi Pamela and Sherrill ,

Thanks for the advice. Sherrill....I think I will hold off on the Nephr. for a while. You calmed my nerves quite a bit. I didn't realize the numbers would get so low before total failure and dialysis. He has a ways to go and I will wait and discuss it with his rheumatologist the end of July.

Take care, Everyone.
Margaret

#6 Piper

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Posted 07 June 2007 - 08:15 AM

Hi Margaret, My GFR was at 70 when it was first tested and I don't have a diagnosis except my Dr. says I have grumbling autoimmune disease. He has kept a check on it tho, every 6 months to see if it's changing. He told me that it might be normal for me or sometimes the NSAIDS can cause the drop although I don't take that many. I was a little worried at first as well but mine has been stable for a year now.
Take care,
Hugs, Piper

#7 jefa

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Posted 08 June 2007 - 10:36 PM

Hi, Joe

Sorry to hear of your rough luck involving kidneys. What you describe sounds like acute renal failure (ARF) often referred to as Scleroderma Renal Crisis in scleroderma. This is actually more common in sclero than Chronic Renal Failure. The former comes on very fast, as you have experienced, and is very scary and life threatening. The latter comes on slowly with few initial signs. The treatment for Acute Renal Failure is ACE inhibitors and Altace, which was prescribed by your doctors is one of these. There are many though, and Altace may not necessarily be the one of choice for a particular patient.

Here is a link explaining the difference between acute and chronic renal failure, which says about ARF causes:
"Prerenal factors (factors that are primarily outside the kidney and before the blood reaches the kidney) that interfere with renal perfusion (for example: fluid and electrolyte depletion, hemorrhage, severe septic infections, cardiac or liver failure, heat stroke, fluid depletion due to burns)."

With reference to safe daily intake of Sodium, 4000mg per day is not low! This previous link says:
"The National Research Council of the National Academy of Sciences recommends an approximate daily range of 1,100 to 3,300 mg of sodium for adults. For people with high blood pressure, hypertension experts are recommending no more than 2,300 mg of sodium a day. The average sodium intake in the United States is between 4,000 and 5,000 mg per day."

(Thanks to ISN News Guide, Sherrill Knaggs, for her thorough research on this subject.)
Warm wishes,
Jefa

Carrie Maddoux
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#8 Joe

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Posted 18 June 2007 - 06:43 PM

Jefa,

Thanks for the detailed information. I am sure I had ARF. My Nerfrologist gave me the 4000 mg sodium limit but I am way under that on purpose. He said my first symptom of too much sodium for my kidneys to handle would be swolen ankles and feet for several days but I have not had any issues. I would bet I am averaging 1,500 mg of sodium or less daily. 95% of everything I eat is home cooked. I am coping with it and seem to be stable.

Joe

#9 jefa

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Posted 18 June 2007 - 07:52 PM

Glad to hear you are watching it. My husband has hypertension issues, so we also cook everything fresh and watch salt. I don't add salt to anything. Since I have limited his salt intake, he is beginning to 'discover' other tastes. He is particularly enjoying garlic, pepper and chilies.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
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International Scleroderma Network (ISN)