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Old 07-29-2012, 05:51 AM   #1
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Unhappy WHAM! Stage 3 Kidney Disease out of the blue - Help Please?!?

I realize this is a pretty long post, but PLEASE stick it out and read… and even better, send along any info, thoughts, whatever, I'm really needing information on what to do now, and what I can expect to go through w Stage 3 KD. So, here I go:

I was rather shocked after picking up my $5 USB medical record that is now offered by Kaiser. I pulled up my "Current Conditions" and next to it, there was a date 2 months old stating a diagnosis of Stage 3 Kidney Disease. Is it really such a "no-big-deal" that my doctor never bothered to tell me when he entered on my chart? I was Pretty ticked off, and called my doctor to ask what in the heck was going on. He was dismissive, but did agree that "maybe" we should run some more tests to check my kidney function and ultra-sound for a quick look. (Almost done with rant part) No explaination of how in the heck I could have this, is it serious, can it be fixed….. (OK, done now)

My Kidney Tests are:

Blood Proteins : Alpha 1 (High) 5.7% (2.0-5.0 norm)
Blood Protein (ALB) 3.7g/dL (4.0-5.0 norm)
Kidney BUN -14mg/dL (7-27 norm)
Kidney Calcium (CA) - 9.3mg/dL (8.5-10.3 norm)
GFR (Low) 54ml/min (>60 norm)
Kidney Creatinine ...bit high (7/24/2009=1.19; 1/12/2010=1.06; 6/7/2011=1.09; 7/18/2012=1.09)< 1.11 mg/dL)
Vitamin D (Low) (8/13/2010= 13; 12/17/2010=20; 6/9/2011=31 (30-100 ng/mL norm)


I guess the main questions I have now are, how did I end up with this, and is it reversible?
I just turned 45, have a steady BP of 104/70, but am very overweight (>30%), and am on a whole slew of pain medications for chronic pain conditions. I've begged Kaiser for alternatives to the drugs, but have been told there isn't anything that would work with my complex and severe pain. My knee is so unbearable that I'm mostly bedridden from the pain. I've had 5 surgeries in last 30 years, and doc refuses knee replacement until I loose the weight- but the pain is so bad … you get the idea)

Before adding Stage 3 Kidney Disease, I've had chronic migraines, Meniere's Disease (a debilitating disorder of the inner ear-I have it in both), Complex Regional Pain Syndrome (aka CRPS; RSDS; Causalgia - RSD), Degenerative Arthritis, Fibromylagia, and Narcolepsy (these hit the main points.) I included my main health issues to explain the heavy-duty medications I'm on: 1.) MS Contin (Oxycontin) 30mg 2-3x daily [for chronic pain + Fibro], 2.) Lyrica 150mg 2x daily [Causalgia & Fibro], 3.) Relafen (Nabumetone) 500mg 2x daily [for Arthritis & Fibro], 4.) Concerta (Methylphenidate 36mg 2x daily [for Narcolepsy & Fibro fatigue] ….PLUS: Demerol 50mg [for break-through pain & migraines], Combo of: Phenergain 25mg + Reglan10mg [for nausea & vomiting from pain].

I'm afraid to even think about the pain medications being the culprit, but I'd like to stick around long enough to see my kids the rest of their way through high school, college, marriages, and finally, grandkids. (I can still dream big!)

Any suggestions, comments ...just anything from this group would be GREATLY appreciated.
Maria

 
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Old 07-29-2012, 06:12 AM   #2
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Re: WHAM! Stage 3 Kidney Disease out of the blue-Help Please?!?

First of all, try to relax. Your labs do not look that bad. Don't get all obsessed with the "stages". You can switch stages, and stay stable at one for a very long time. It took me about 20 years to get from where you are now to dialysis. My cause was diabetes.

It is possible that some of the pain meds have caused the kidney issues. In the meantime, I would cut back on salt and animal protein as these are hard on the kidneys. Talk to the doc about seeing a nephrologist (kidney specialist) and a renal dietitian.

As I said, things can stay stable for a very long time. You have plenty of that. Feel free to ask lots of questions.
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Old 07-30-2012, 06:02 PM   #3
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Unhappy Re: WHAM! Stage 3 Kidney Disease out of the blue-Help Please?!?

Thank you for an objective look at my labs and such. Guess I'm mostly freaked-out that my doctor didn't tell me I had a Kidney problem. I found out by accident, when I happened to look at my medical record and saw the label Stage 3 Kidney Disease. I spoke with my Rheumatology doctor this morning and discussed my kidneys. He agreed with the current plan of re-testing every 4 months and then, if my Kidney Creatinine increases, changing my anti-informatory med.

Has anyone gone backward (stage 3 to stage 1, or even to no further kidney issue)? Thank you everyone who has taken the time to take a look at my post. All feedback or comments are VERY welcome.

Last edited by ALittleLoopy; 07-30-2012 at 06:08 PM. Reason: typo!

 
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Old 07-30-2012, 09:51 PM   #4
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Re: WHAM! Stage 3 Kidney Disease out of the blue-Help Please?!?

In cases of acute kidney failure, it is sometimes possible to reverse damage, and to restore normal levels of kidney function. However, in your case, I would have to say that you are experiencing a chronic state of decreasing kidney function. However, as Cora has correctly pointed out, you can take reasonable measures to slow, even stop, this downward trend in renal function. But you will have to be willing to undergo some lifestyle changes, and the first is loosing weight!
How is your general state of health, at present? Did you feel any symptoms, as in fatigue, increased or decreased urination, etc? Also, vit. D deficiency seems to be tied with CKD, but can be fairly easily controlled. Don't worry too much, you can get a handle on this and not worry for many years. It is very odd that your doctor didn't say anything.

 
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Old 08-01-2012, 05:41 PM   #5
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Post Re: WHAM! Stage 3 Kidney Disease out of the blue-Help Please?!?

My health… well, it’s not very good, and I seem to be collecting a few more disorders every few years. I have several chronic health issues, so here it goes:
Chronic Migraines since I was 5
RSD (aka RSD, CRPS, or Causalgia- causes severe burning sensation, muscular and joint pain symptoms, and changes in bone density) for 30ish years, ago following my 1st of 5 knee surgeries, and have lived in severe chronic pain ever since.
Chronic Pain, Joint Pain
Meniere's Disease - a debilitating disorder of the inner ear & balance system-I have it in both ears) and had to go on permanent disability.
Hearing Loss, Vertigo
Fibromyalgia – extreme “brain fog”, pain so many places- my arms to sensitive for my kids to cuddle up , severe chronic fatigue (it actually hurts, feeling like a purposeful torture of sleep deprivation).
Narcolepsy – Found after a 2-part sleep lab test (a full nighttime test, followed by diagnostic naps the following day). They found I had 0% delta sleep (the restorative period during sleep) in the overnight study. The “napping” study showed I fell asleep between 2-7 minutes each period, and went directly into delta sleep.
Gall Stones (no issues, they just showed up on an Ultra Scan
Vitamin D Deficiency
Stage 3 Kidney Disease – no symptoms that I know of so far…
I also have a high-functioning Autistic son entering high school this fall. It has been a LONG rough, stressful time, with endless work by my son, my husband and I, as well as any support I could get from the school district. (My son worked so hard on his social skills that he finally moved from special-ed to regular classes during middle school, but it is definitely an ongoing family effort to provide support and help him succeed.)

About 4 years ago I lost 76 lbs that had crept on over the years, and was a size 16. I slowly re-gained, by eating when stressed or hit with unbearable pain (the sugar released pleasure endorphins, working better than pain meds. I’ve re-lost 12lbs, but it’s hard. A quick peek at the Kidney diet scared me, as most of my favorite fruits and veggies are listed! Right now I’m going to continue to eat healthy veggies, some fruit, watch my protein, and limit carbs …and NO Sugary Treats (my downfall!). If my next kidney test shows continued Kidney issues, I’ll have to work with a dietician to help me plan long term eating habits I can keep up while choosing Kidney friendly foods.

 
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Old 08-01-2012, 06:05 PM   #6
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Re: WHAM! Stage 3 Kidney Disease out of the blue-Help Please?!?

Don't change your diet unless a renal dietitian tells you too. What you can eat will depend entirely on your labwork and kidney function. Right now you won't have to limit fruits and veggies as potassium and phosphorus issues are virtually unheard of at your level of functioning. Why limit yourself unless you have to.
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Old 08-01-2012, 06:20 PM   #7
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Re: WHAM! Stage 3 Kidney Disease out of the blue - Help Please?!?

I would want to look at your urine test results and see if you are leaking blood or protein in your urine. Also, have you been tested for lupus recently, an autoimmune disease that can cause many of the symptoms you have plus kidney disease. The non steroidal anti-inflammatories are hard on the kidneys, and are usually avoided with CKD. A nephrologist should be consulted, just to get established, discuss prevention and any recommended other tests. Your Dr was amiss at not telling you this. I would look over the rest of your records and see if other abnormals show up on your labs that are a surprise or were not followed up, in case anything else slipped thru the cracks.

 
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