Hi everyone. I wrote a post a couple of weeks ago about my husband going to the Nephrologist for the first time. At the consultation, his Nephrologist was pretty optimistic but also concerned with the microhematuria.
We both know something is going on but it's becoming clear that getting a proper diagnosis will be complicated. It's leaning toward something genetic. I think it's some sort of tubular injury but who knows...
The good news is, his GFR went up to 80. The only thing he's done is add more fresh fruits & veggies to his diet and lower his meat consumption to once a day at 4 ounces. No red meat and no pork.
I will post his most recent labs below. But I want to include, before the visit to the Nephrologist, his primary care doctor tested him for Wilson's and nothing came out of that but, he his slightly deficient in blood serum copper and slightly over in his urine copper. He went to a eye doctor and found zero evidence of Wilson's or copper build up in his eyes. He does however have persistent lower back pain when standing for long periods.
(His Nephrologist hasn't gotten back to us on his thoughts regarding these tests just yet. )
Here are his labs:
●US Renal & Bladder (ultrasound): no evidence of obstructive uropathy or other acute finding.
●Parathyroid: 32.20 pg/ml *NORMAL *
●Renal function panel:
Sodium: 140
Potassium: 3.9
Chloride: 101
Total C02: 28
Anion Gap: 11
Calcium: 9.5
Glucose level: 95 (no fasting)
BUN: 11
Creatitine: 1.17
Albumin: 5.1
Phosphorus: 2.3 *LOW*
eGFR: 81
●Vitamin D 25 hydroxy: 22.7 *slightly low*
●Uric Acid: 2.0 *VERY LOW*
●Creatitine Kinase: 148
●PT/INR:
PT: 11.8
INR: 1.05
●Creatitine level urine: 59.3
●Protein level urine: 54.1
●Urinalysis:
UA PH: 8.0
UA Spec Grav: 1.012
UA color: colorless
UA appear: cloudy
UA Glucose: Negative
UA ketones: Negative
UA blood: Trace
UA Protein: 2+
UA urobilinogen: Normal
UA bili: Negative
UA nitrite: Negative
UA Leuk est: Negative
UA WBC: value 1
UA RBC: value 2
UA Squam epi: Few
UA mucus: Trace
●Sodium level urine: 104 mmol/L
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Bananas2007
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We are not able to diagnose on this forum, so cannot tell you what his blood work means. . It is good his eGFR went to 81 with diet. Does he have a dietitian to make sure is getting correct nutrients in his diet. His nephrogist should be able to help you also.
Thank you for your reply. So far, he hasn't been set up with a dietitian. I'm assuming his Nephrologist will get with him regarding his test results early next week. We are just a little perplexed as his results seem atypical compared to others with CKD.
I can tell you that most ckd does not cause lower back pain EXCEPT polycystic kidney disease which is genetic (or at least that is what I have been told, not to say someone couldn't experience that). Of course the back pain may be unrelated to his kidney issues. I just thought it was worth mentioning, but surely his nephrologist would know this. It can be easily diagnosed via ultrasound of the kidney. Sometimes it can occur with no family history. In my case one of my grandparents had it but both died of other things so no one knew until some of their children were diagnosed.
His ultrasound came back clear. But his Nephrologist hasn't looked at it yet, that was the radiologist that gave the feedback. What do you think about the amount of protein he's leaking?
Soooo, are you saying that my lower back pain could be caused by my PKD? I've been hurting for a while now and have never figured out what is causing it, whether it's arthritis, some kind of injury that I don't know about, or whatever. It does not feel like muscle pain. Do you have lower back pain with your PKD? Did it cause you lower back and flank pain, I hurt in my right flank as well (hurting as I type this), Also hurts worse if I pick up something that's a tad heavy. And hurts if I sit the wrong way for too long, making it hard to get up out of the chair without pain in my side and abdomen. And it sometimes feels like the pain radiates down the front of my leg a bit. Not sure what's causing that either. I know, you can't diagnose this, neither can I, but after telling my nephrologist, he basically seems to think it comes with the territory of PKD and didn't offer any suggestions other than tylenol. I may see my primary doc and get his thoughts on it. Let me know about your experience with pain and PKD when you have a moment.
Yes it definitely could be due to your PKD (but that is not to say you don't have something else going on or another reason for your pain, only a Dr could tell you). Most people with PKD have pain, esp if your kidneys are very large. I was very fortunate not to have unbearable pain most of the time, just a lot of discomfort, even though my kidneys have been enlarged since at least age 13 and continued to get bigger over time. Maybe I was just used to it since my kidneys grew large very fast at a young age. I did however suffer from extreme pain when I would have a cyst become bothersome or rupture. Sometimes I would have to go to the ER because Tylenol was not enough. The reason why your nephrologist says to take Tylenol is because all nsaids (ibuprofen, Advil, Aleve, etc) are filtered through the kidney and you will damage your kidneys if you take them. I wish I could offer you some better help in this area, but I mostly just dealt with it because I don't like to take more medication than I have to.
Hey, I'm totally with you about not taking medication. I've sorta just been putting up with the pain for about 2 years, more so since I had a cyst burst last November and another one in January. I did take one Percocet pill for that second one since tylenol just wasn't doing the job. Didn't go to the ER, but sure felt like I should. It quieted down by the end of the day which probably prevented me from an ER visit. Yeah, I know about nsaids, which is a bummer. I don't take Tylenol regularly, just every few weeks if the pain is fairly bothersome. But this helps me to know that the pain could be PKD related, so at least I have an idea of the source and that this is not unusual. (wonder what it is that exactly hurts in there). I will bring this up with my GP since my neph just didn't seem interested when I told him about the pain. Soooo. the big question is... does the pain go away after Transplant? and can you take nsaids once your on dialysis before transplant?
You can't take NSAIDS after a kidney transplant, I assume you probably wouldn't want to on dialysis either bc dialysis only keeps your egfr around 30 or so I believe, so it's just harder on your body to have more to have to filter out. Even my kidney donor was told not to take NSAIDS now. As far as the pain, I think it's different for everyone. Most people's kidneys with PKD reduce in size after a kidney transplant, I don't know how long that takes, but I think that should help with the pain. I still have occasional pain, but I'm only 7 weeks post transplant so I guess time will tell! Since I still have both my native kidneys with cysts I assume it's possible to have a cyst rupture as well, plus I have cysts on my enlarged liver. Right now I have not had any serious pain.
If it is not broke don't try to fix it. Don't go looking for a problem that they cannot do anything about except what you are doing now. Someone posted about their biopsy the other day and basically something was nicked during the procedure and they were in a bad way. With a gfr of 80, stay blessed and do what you are doing now.
I totally agree. But if it is something that will cause a decline in his kidney health, we would like to know. There are some rare genetic syndromes that are treatable, especially if found early.
Does your husband sit at a desk for work? I had intermittent lower back pain on the right side about 2 inches below my waist (felt kind of like sciatica). Because of this pain, my doctor ordered a kidney scan and it turns out my right kidney is smaller than the left and when they did the blood flow scan they discovered about 60% blockage in that kidney. No one really knows if that is what caused the pain (I do sit at a desk all day which I am certain is part of the problem) but it has since gone away, perhaps because I get up and move around during the day.
Hi Peacan, my husband works in a warehouse and stands on concrete floors all day. His back is probably hurting due to those conditions as his back doesn't hurt too much on the weekends, even when he's up and moving constantly.
Honestly our big concern right now is his protein leakage. If we can figure out what's causing it, I am hopeful we can stabilize his kidneys.
The concrete floor can definitely cause the back pain. Good shoes are the answer. As for the protein leakage, hopefully it will be a temporary condition.
Hi Bananas, I can't speak for the protein leakage, I have that too, big time, due to diabetes and BP meds and a diuretics'. But, lower back pain I can. What kind of shoes does he wear? Do they provide good support? Do they cushion the feet on the concrete? A good exercise to do for that is to stand up straight, hands on your hips and bend backwards as far as possible, head back, return to upright then bend over from the waist, just a bit and tighten the abs. Do a few each way, in the morning, mid day and at night. If you're into yoga, imagine cobra and cat cow positions.
Usually CKD does not cause back pain. Chances are that is something unrelated. Kidneys on their own do not cause pain. No blockage was found in his US.Protein in his urine - some of us, even me, who had a transplant has some protein. My last labs and urine showed I had <5. Normal for my lab is <12.
Your nephrologist is the kidney expert, ask him questions regarding protein in his urine.
Thank you. Unfortunately, he's showed protein the last few urinalyses test. This is just the first one w/ his neph. The last couple were from his primary care doc.
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