Chronic Kidney Disease Stage 2
I don't know why this most recent diagnosis is getting to me so much, but it is. My blood work came back indicating kidney issues, and my primary care doctor sent me to a nephrologist. He looked over my labs and said he's diagnosing it for now as Chronic Kidney Disease Stage 2. He took more blood, a urine sample, and I'm having a kidney ultrasound on Friday. He reassured me that I'm nowhere near needing dialysis or anything, but I do need to be cautious about how much ibuprofen I'm using. He said I can take some, but be thoughtful about it. I'm afraid to take any now!!
When I was working (until March 28th of this year), I had to take 800mg two or three times a day just to get through. Since I've been off, I only take it when I have errands to run or need to clean. Otherwise I just go to bed.
Do any of you have this diagnosis? How have you coped with it? Has it meant any major changes for you? He said if it gets any worse, I will have to limit my protein intake, and I so don't want to do that. I love fish, and I feel stronger when I have protein!!
I guess I'm just pouting too because I've given up my career, gave up my church because illness made it impossible to continue to volunteer and meet my obligations there. I just gave up fostering dogs over the weekend, which is really hard. I quit drinking pop/soda in January, I quit eating ice cream last month. I'm just so tired of having to let go of so much all the time.
I can't offer any advice, just hugs.
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We all have to give up what we have to give up. It is not easy. It is very hard, but through time you adjust pretty well to most of what you have to give up. Hang in there.
Just a reminder of how lucky you are. My dr. never picked up on my kidney disease until stage 4, I had to do chemotherapy and lots of steroids I gained 40 lbs! So pay attention to your body and be grateful that it is not worse. You will have to give up alot more if it gets worse.
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Such a coincidence that you posted this..I am in the middle of the same situation. I am at stage 3 right now and no one but me is freaking out!
I have been assured that there is nothing to "do" right now. I do not take ANY pain meds anymore-they don't work anyway!
So we are just waiting...Such a frustration with SLE that I always feel like I am waiting to see which organ will fail next...but we press on.
I understand your frustration and I'm sorry this has taken so much from you.
Last edited by Divamomof5; 07-27-2014 at 07:52 PM.
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Thank you all so much for your posts. I know that we all have to give up a lot over the course of our lives, especially with lupus and other autoimmune diseases. I guess I was whining because it felt like too much all at once. But I also realize how fortunate I am to still have as much as I do.
Divamomof5, I'm sorry you're going through this too, but I'm so glad you s hared that you're in the same situation!! My labs show it should be considered Stage 3, but my nephrologist is calling it Stage 2 until the results of the ultrasound and labs are back. I haven't taken any pain meds in over a week now, and I had to spend a few days completely in bed, but I'm learning to adjust. I know exactly what you mean about waiting to see what comes next!! But I'm trying to use this time to rest, get stronger, and consider what I might still be able to do that would be useful somehow.
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First off I'm gonna apologize if this sounds a bit jumbled, suffering from a bad respiratory infection atm & my brains foggier than usual lol
I have stage two ckd, I think as with anything it all depends person to person. What I'm gonna relay is what I've dealt with /figured out along the way. When I was dx I had no idea what it really meant, so maybe it can help you in some way.
First thing I was told (which I already knew) was starting with fluids. For me it means I'm really prone to dehydration, in fact at times i have to go in to get fluids. There is a happy balance though between too little & too much. The basic part of this are things like this: don't over exert yourself. Especially when it's hot. It's a big no no. If you're working out, sweating a lot, etc make sure you stay hydrated. I have made this mistake soooo many times myself-I get this "I'm an unstoppable big bad a--" and I'm not lol if you start feeling dizzy, light headed, etc it's a pretty good indication you've gone past your limit. Sweat-that's important too. If you notice a decrease in sweat or have stopped all together (I've actually reached this point a few times) it's probably a good idea to contact your doctor.
Food-here's something that's all based on you. For me, i eventually underwent a dietary kidney assessment (not the technical term) it was about an hour or so questionnaire about my dietary habits. Salt, I think for majority of ppl with ckd is a bad thing if you over do it. It also assessed my purines & protein consumption.
I'm breaking food up into a couple parts--after said evaluation everything was conveyed with a reg urinalysis, speciality blood work & several 24 hr urine collections. What this does is correlate everything into one nice neat little stack of information. For me, I spill calcium & protein. My Uric acid levels are also really high which means I also form uric stones. Some people have other higher levels that make them prone to form other types of stones (oxalate being the more common kind). Another good rule of thumb for drinks: if you can't see through it, it's not kidney friendly. Not things like cranberry juice, but things like dark sodas. I learned this early in, when I was in the hospital & I was prohibited from ordering anything dark. I could have sprite, 7up, even Mountain Dew...but absolutely no Pepsi/coke/coffee etc. as I've been continually encouraged to avoid it & do for the most part-I have definitely noticed a difference when I don't (like when I'm dying for a fountain coke/Pepsi) I can't finish half of it without being whammed with horrible kidney pain.
The third part of the food is this-I've learned that any GOOD nephrologist will always take a urine sample at every appointment. To which they will not only quickly test it for hematuria (blood in the urine) but also for those pesky calcium, key tones, proteins etc. this makes your appointments soooo much more beneficial & helps keep doc in the loop for a quick up to date look at your kidney function.
Medications: again this is all dependent on where & what your levels are. Some of the medicines I'm on are things like citric acid, hydrochlorothizide (not for my bp, thankfully that has stayed low!) & uloric--allopurinol is another variety of this medicine, but if you have seizures like me it can induce/encourage them. Also, I've learned this the hard way: if some medicines are effecting you weird/or making you ill--ask your doctor about how they're metabolized by your body. Some medicines (for me it was some hospital grade pain killers--my kidneys do not remove them fast enough/well enough which means they stay in my system longer/I build up to toxic level) are actually metabolized by your kidneys/excrete waste from the drugs. This can alter the effects of them & some can be down right hard on your kidneys. If you also have things like gross hematuria, blood thinners like Motrin, naproxen, etc might have to be avoided (again talk to your doctor) especially after any sort of procedure (like cystos/lithos/etc).
Some medications, like uloric or allopurinol you have to avoid certain foods-like foods that are high in vitamin k, or high in purines like spinach.
This may all sound impossible to maintain, but for a spinach lover like me, rest assured it isn't.
Other things to look for (some I might have mentioned above) is swelling, high bp, etc. gout could also raise its ugly head, if you notice symptoms I'd advise cueing in your nephrologist.
It's a broad topic to cover, and I'm sure I've not covered the tip of the iceberg. But hopefully some of what I've said can give you some insight. And again, I'm no doctor, these are just things I've learned from years of dealing with ckd myself. The best thing you can do is to inform yourself-whether it's research online, checking out the chronic kidney disease sites, or hitting up the local book store. Some of it might sound overwhelming or scary. While its not something to take lightly, worrying yourself to death isn't going to do you much good. Write down questions or concerns & discuss them with your doctor-they can give you a more personal understanding of what ckd means for you. P.s.sorry such a lengthy response
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