blizzard2014 Posted October 28, 2018 Report Posted October 28, 2018 I might have discovered the source of my POTS. I don't know how accurate ER testing is, but it shows some really messed up kidneys. I went to the ER last night just to make sure my Gallbladder is not going to rupture or anything before surgery in a few weeks. They listed in my lab results protein in urine, a BUN of 30, Creatinine of 1.71, and an EGFR of 44. That straddles the line between stage 3b kidney disease and stage 4 kidney disease. Coupled with the chronic headaches and all over body muscle and bone pain, it kind of makes sense now. I was so bad yesterday at work that I could not even tolerate standing for 2 hours. Not even with pain meds. My shoulders hurt so bad and muscles in legs I had to keep on returning to my car to sit down. I will be calling off work for a few days to see if this improves. I almost couldn't make it home the 35 miles on the freeway. I thought it was all Gallbladder issues, but now it is problems with kidneys. I had a kidney function test that was sort of abnormal 13 months back in the ER, but my EGFR was barely within normal range. It seems I have lost a lot of function in between the two tests. The doc didn't even tell me about these abnormalities. I read them on my own and looked them up online. Maybe the standing BP surges have gone high enough to damage my kidney function. I think I had POTS surges for many years before taking BP medication. Also, diabetes for almost ten years. So many of these issues can also contribute to CKD. I don't know how many diseases one person can get. It's like I'm getting everything in the medical dictionary. I know I won't be going on dialysis and prolonging things. Just enjoy what time there is left and then move on to the next realm. Maybe I will come and haunt one of your houses. Or haunt the ER lol. I will have to see my doc again and ask what's happening. Thanks for the support. Quote
StayAtHomeMom Posted October 28, 2018 Report Posted October 28, 2018 Diabetes is well known for damage to kidneys. There are things that can be done to save your kidneys I am sure. And if it is your underlying cause then fixing them may alleviate some of your other issues. Good luck at your next doc appt. Quote
firewatcher Posted October 28, 2018 Report Posted October 28, 2018 I've had stage 3A Chronic Kidney Disease for 12 years. It was apparent on my labs (though not ever mentioned) before my POTS dx. I've asked at least 3 POTS specialist doctors (at Vanderbilt and Dallas) and they have assured me that POTS does not cause CKD. I've also talked with enough nephrologists and CKD patients to know that CKD does not cause POTS. With a BUN at 30, it is likely that you were dehydrated (or hypovolemic) or eating a LOT of protein. There are things that you can do that will prolong the function of your kidneys at this level (avoiding certain drugs and eating mostly vegetarian/vegan to lessen the filtration burden.) The "normal" tests for kidney function will not necessarily be accurate for us because of the whole POTS/hypovolemia/blood volume/blood pressure issues. Hypothyroidism can also mimic CKD and is absolutely correctable. Don't let any doctor belittle you, these are your kidneys and are really important. Find a doctor you can trust if you can, and learn everything...but you will likely have to do it all yourself. The thing to remember with kidney function is that it is not based on the results of a single test, but the trend of results over time. Even with CKD, it is very likely that you may have decades left without issue, but your kidneys have "less reserve" than fully functional organs. Quote
MomtoGiuliana Posted October 29, 2018 Report Posted October 29, 2018 So sorry for your scary test results and your symptoms. I would suggest not coming to any conclusions until you can be evaluated by a specialist. Quote
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