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bfoot
04-06-2008, 02:25 PM
Hi There,

I've been reading about SLE in the last few days. My niece told me she has stage 4 with her kidney. She told me in mandarin, so I do not know what that really mean. Can anyone provide a guidance? And how serious it is. Thanks.

wooi

Saysusie
04-07-2008, 07:59 AM
Hi Bfoot;
With chronic kidney disease, the kidneys donít usually fail all at once. Instead, kidney disease often progresses slowly over a period of years. the National Kidney Foundation (NKF) created a guideline to help doctors identify each level of kidney disease. The NKF divided kidney disease into five stages. When the doctor knows what stage of kidney disease a person has they can provide the best care, as each stage calls for different tests and treatments.
Doctors use the Glomerular filtration rate (GFR) to measure the kidney function. The GFR is the number used to figure out a personís stage of kidney disease. A math formula using the personís age, race, gender and their serum creatinine is used to calculate a GFR. A doctor will order a blood test to measure the serum creatinine level. Creatinine is a waste product that comes from muscle activity. When kidneys are working well, they remove creatinine from the blood. As kidney function slows, blood levels of creatinine rise.

Below shows the five stages of Chronic Kidney Disease and GFR for each stage:
Stage 1 with normal or high GFR (GFR > 90 ml/min)
Stage 2 Mild CKD (GFR = 60-89 ml/min)
Stage 3 Moderate CKD (GFR = 30-59 ml/min)
Stage 4 Severe CKD (GFR = 15-29 ml/min)
Stage 5 End Stage CKD (GFR <15 ml/min)

Dialysis or a kidney transplant is usually needed in order to maintain health.

Stage 4 Chronic Kidney Disease (CKD)

A person with Stage 4 CKD has advanced kidney damage with a severe decrease in the GFR to 15-30 ml/min. It is likely someone with Stage 4 CKD will need dialysis or a kidney transplant in the near future.
As kidney function declines, waste products build up in the blood causing a condition known as ďuremia.Ē In Stage 4 CKD, a person is likely to develop complications of kidney disease, such as high blood pressure, anemia (a shortage of red blood cells), bone disease, heart disease and other cardiovascular diseases.
Symptoms that are experienced in Stage 4 CKD include:
* Fatigue: Feeling tired is common for people with CKD and is often caused by anemia.
* Too much fluid: The kidneys may lose their ability to control how much fluid stays in the body. A person may notice swelling (edema) in their lower legs, hands or face around the eyes. With too much fluid someone, could even feel short of breath.
* Urination changes: Urine may be foamy if there is protein in it, or dark orange, brown, tea colored or red if it contains blood. A person may urinate more or less than normal, or get up at night to go to the bathroom.
* Kidney pain: Most people with CKD do not have kidney pain, but with some kinds of kidney problems, such as polycystic kidney disease or infections, they may have pain in their back where the kidneys are located.
* Sleep problems: Some people have trouble falling asleep or staying asleep. Itching, muscle cramps or restless legs can keep them awake.
Nausea: Vomiting or feeling nauseated may occur with CKD.
* Taste changes: Food may not taste like it usually does, or may have a metallic taste.
* Uremic breath: As urea builds up in the blood, it may be detected in the breathing causing bad breath.
* Loss of appetite: People in this stage may not feel like eating, and some people report having a metallic taste in their mouth or bad breath.
* Difficulty in concentrating: Having trouble balancing a checkbook or focusing on reading the newspaper can happen with CKD.
* Nerve problems: Numbness or tingling in your toes or fingers is a symptom of CKD.

At Stage 4 CKD, it is necessary to see a nephrologist (a doctor who specializes in treating kidney disease). The nephrologist examines the kidney patient and orders lab tests to gather information to recommend treatment.
People in Stage 4 CKD will usually visit their doctor at least every 3 months. Blood tests for creatinine, hemoglobin, calcium and phosphorus levels will be done to see how well the kidneys are working. The doctor will also monitor other conditions such as high blood pressure and diabetes. In addition to helping the patient keep their kidneys working as long as possible, the nephrologist will also help prepare the patient for dialysis or a kidney transplant.
Those with Stage 4 CKD, who will need treatment, should be told about their choices, which are hemodialysis, peritoneal dialysis or a kidney transplant. For those who choose hemodialysis, they will learn about getting a vascular access. The vascular access allows the patientís blood to travel to and from the dialysis machine at a large volume and high speed so that toxins, waste and extra fluid can be removed from the body. The AV (arteriovenous) fistula and AV graft are created surgically and need a few months or so to mature. The nephrologist should inform their Stage 4 patient about the procedure to have the access placed and the advantages of having an AV fistula in place before beginning dialysis.
Someone in Stage 4 may also be referred to a dietitian. Because diet is such an important part of treatment, the dietitian will review a personís lab work results and recommend a meal plan individualized for their needs. Eating a proper diet can help preserve kidney function and overall health.
For Stage 4, a dietitian will usually recommend eating a healthy diet with reduced amounts of protein to help decrease build up of protein waste. Phosphorus may be limited to help keep blood phosphorus or PTH normal and prevent renal bone disease. Controlling phosphorus may also help preserve existing kidney function. Calcium may be limited if blood levels are too high. Potassium may be restricted in Stage 4 CKD if blood levels are above normal. The dietitian will also take into consideration if the patient has diabetes and provide tips on limiting carbohydrates in their diet. They may also recommend a diet low in sodium for those with high blood pressure or fluid retention. Supplementation with water soluble vitamins may be recommended. Vitamin C may be limited to 100 mg per day from supplements. Nutrients like Vitamin A and some minerals may not be recommended because levels can build up in the blood as kidney function declines. The dietitian may recommend avoiding over the counter dietary supplements unless approved by the nephrologist. It is helpful to work with a registered renal dietitian because as the stages of CKD change, so will the diet.

A healthy diet for stage 4 CKD may recommend:
* Including grains, fruits and vegetables, but limiting whole grains and certain fruits and vegetables if blood tests show phosphorus or potassium levels are above normal.
* A diet that is low in saturated fat and cholesterol and moderate in total fats, especially if cholesterol is high or if you have diabetes or heart disease
* Limiting intake of refined and processed foods high in sodium and prepare foods with less salt or high sodium ingredients
* Aiming for a healthy weight by consuming adequate calories and including physical activity each day within your ability
* Limiting protein intake to the level determined by the dietitianís assessment of individual needs.
* Consuming the DRI for the water soluble vitamin B complex and C.
Vitamin D and iron may be tailored to individual requirements
* Limiting phosphorus if blood levels of phosphorus or PTH are above normal
* Limiting calcium if blood levels are above normal
* Limiting potassium if blood levels are above normal

It is recommended that people in Stage 4 keep their blood pressure at a healthy level and those with diabetes keep their glucose level under control. Taking all the medicines as prescribed by the doctor may help prolong kidney function.

In addition to eating right and taking prescribed medicines, exercising regularly and not smoking are helpful in maintaining health. Patients should talk to their doctors about an exercise plan. Doctors can also provide tips on how to stop smoking.

The National Kidney Foundation guidelines recommend starting dialysis when kidney function drops to 15% or less. By doing everything possible to help prolong kidney function and overall health, the goal is to put off dialysis or transplant for as long as possible.

I hope that I've answered your questions. Please let me know if you need anything further!

Peace and Blessings
Saysusie

bfoot
04-07-2008, 08:42 AM
Hi Saysusie,

Thanks for the valuable information. She was first diagnosed with SLE since June or July last year. Is this possible a result of SLE in such a short period of time?

Thanks,
wooi

sick n tired
04-07-2008, 11:38 AM
Hi wooi,

I am so sorry to hear that she is so ill. I know that makes the heart sink. Perhaps she had sle longer than you know she just didn't have it diagnosed. Many of us had it for years before diagnosis because many other common illnesses have the same symptoms.

You and your niece will be in my thoughts and prayers.

Karen

Saysusie, as always you are a wealth of knowlege.

bfoot
04-07-2008, 12:16 PM
My niece is going to get more test result back tomorrow.

She just turned 19 earlier this year :-(

Saysusie
04-08-2008, 08:29 PM
Many of us have determined that we suffered from symptoms of Lupus for years and years before we were diagnosed. It is not unusual to finally get a diagnosis when you are almost critically ill!! So, in answer to your question, yes - it is entirely possible!! :?

You and your niece are both in my prayers. Keep us posted about her test results.

Peace and Blessings
Saysusie

sick n tired
04-08-2008, 08:34 PM
Hey Wooi,

Has your niece called today with the results? I am still praying.

Karen

bfoot
04-09-2008, 06:01 AM
I talked to her sister (my other niece) and has not gotten the complete story about the test result. She is at the stage 4 of the kidney disease, the doc confirms that. I was also told she is tired all the time, she couldn't do much and has to stay in bed for an extended period of time. I'll try calling my brother (her dad) tomorrow evening.

bfoot
04-10-2008, 05:56 AM
She sent me a short email last night, she will start another round of treatment with injection and different type of drugs (she does not know yet what they are). She is taking prednisolone and plaquenil now.

sick n tired
04-10-2008, 08:32 PM
Still keeping your family in my thoughts, wooi.
Hopefully these new drugs will do the trick.


Karen