Hi, I'm getting myself really worked up about getting the lab work back on my 3rd urine sample from Friday. It's been a bit of a roller coaster because at first I was told it could be a reaction to my IB medication (Mirabegron) but a pelvic exam kicked off the ovarian cancer scare, then the scan of my kidneys and ovaries caused howling screaming pain, but cleared me of cancer. Phew, but o So I went back to see the Dr who took another urine test and said it was infected (it was a very odd colour and frothy like beer), and gave me antibiotics and sent the sample away to the lab. Ring tomorrow for the results and we'll change you onto exactly the right antibiotics he said, so I did.
The following day, the receptionist told me the sample had come back normal. I double checked she was looking at the right one, yes she says. What shall I do with the antibiotics? Oh, she says, erm, take them if you like? My mum happens to have a friend who is a hypochondriac and keeps a stash of medical equipment at her house. I provided her with a sample which was looking more like a glass of mild with a foamy head, and having cast a critical eye over it, she dipped it with a testing stick. Immediately it changed to show high levels of protein (off the chart), some blood, and a very high PH (also off the chart). By now I was rather tearful and I went back to the surgery and explained that I wasn't happy with this test result. I got seen quickly (having been in renal failure twice before), but the Dr looked at me like I was a crazy person. He was fairly dismissive and repeated the test results, but when I handed him the latest sample he looked shocked, and said it couldn't be normal. He dipped it, and started talking about referring me to a nephrologist. Because it was Friday afternoon, the tests that he wanted doing on it won't be done on it until at least tomorrow afternoon, so I've had a weekend of wondering what very high levels of protein and frothy urine means. The internet has me very scared as the answer seems to be kidney disease. And because I don't have diabetes or high blood pressure or one of the other illnesses that can cause it, it seems to suggest it will be harder to treat/control. There is also the question mark over Lupus SLE that has so far been excluded by blood tests despite being symptomatic. If this turns out to be Lupus Nephritis (the kidney type) then it's the worst sort to have. I was just wondering if anyone has any experience of kidney problems that aren't so scary that are maybe linked to Fibro, or pain killers or other Fibro drugs or something less sinister that could put my mind at ease a bit? Thanks xxxx
Sending you a big hug.....know where your coming from....ive had challenges, tests up then down, had protiens last week then test went to hosp it was clear, sure its fibro ammune system....dont frighten yourself on internet please, i need talk i do the same.....i have lupus the blood type.....you may find everything is fine, worrying doesnt help, we have a funny system, i know how hard it all is. try to be kind to your self you sound lovely person.lots of love x
Oh Alex, that's tough. I hope sample and appointment get treated properly this time - as if you don't have enough on your plate.
Don't take antibiotics if you don't need them and beware of keeping them, they do have a finite shelf life. and should be treated with caution. Don't keep them just in case there's a use. You will be well aware of that - they may react with what you are taking in the future Unfortunately you can't take them back.
I've had high protein in urine tests before but then realised I'd had a cuddle that morning before the sample. Scared the nurse though!
Try my left shoulder. It's softer and not screaming at the moment
Gentle hugs. I winder if Sian has some fluffies right now.
Funny, she's been quiet today.
As to frothy, I wonder if it's just something you ate or drank. I don't know what could do that and doctor's reaction is beyond me.
Update - after a rather fraught wait the GP finally called me at close of play yesterday and in a rather bored voice told me that despite his test showing 'loads of protein' the sample had come back clear from the lab, so was there anything else in the pipeline I wanted to complain about while I had his attention. I ended up cancelling the appointment I'd made to talk through the results and putting the phone down feeling yet again like I'd been short-changed. I don't know if it's because of my mental health, but I get a definite vibe of being humoured and barely tolerated by my GP!
In Essence it looks like new GP time. I probably didn't help putting the phone down or cancelling apt but from your side it looks like you're being short changed.
Poor you. Gentle hugs. x
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I'm sorry to hear that Alex it must be really worrying as well as frustrating for you. I have felt that feeling a few times myself over the years, disheartened and unheard. I do, however, believe that when you've calmed a little that talking to your GP is important. If you still feel like this after that talk then maybe Mr badger is right and a new GP maybe on order!
I think it will always be difficult when you're dealing with new things like GP's you don't know them and they don't know you. It takes time to build up any kind of relationship. Your GP possibly doesn't understand your fear of going through renal failure again and maybe telling him/her may help to iterate that.
Sending some calming lavender fluffies for you hunny and ask why was there such a level of concern because in my opinion it's your right to ask take care my friend xx
Dear Lipbalmaddict, I have no finite answer for you but I have the same thing going on, loads of blood and protein in urine and it kind of has a "head" on it rather like beer. This is ongoing and has been since my teens, occasionally a GP or specialist gets a bee in their bonnet, and orders up more tests, convinced I'm sure that they will be the one who works it out (big round of applause, paper in the Lancet) Its happened recently at my appt in urugynae I'm now going to have a camera in !my bladder as if I haven't got enough to put up with, I do get frequent infections but blood and protein appear in ALL my tests, regardless. I now know its also the case with my daughter, I only hope she doesn't have to go through what I have! One thing I will say, is after almost 40 years, it hasn't killed me yet!☺.
I've recently had problems with my kidneys too. Blood and protein in my urine . I've had ct scan , ultrasound and the camera in my bladder. I got myself all worked up too. It turns out I have IGA nephropathy. At the moment my kidneys are working so they won't treat it , but basically there's a bleed somewhere in my kidneys.I can have a biopsy to find out exactly where but they still won't treat as long as my kidneys are coping, but they are going to monitor it.Its not serious , but can make you feel unwell , but my first thought was kidney disease.Just wait and see it might but be as bad as you think
Thanks for replying, sorry to hear you have this problem too. Have they said what has caused this to happen to your kidneys? That's the thing that has me rattled, I don't 'fit' the criteria for people at risk of kidney problems xx
Believe it or not a throat infection I had a few months prior. Apparently that's where this illness starts.
Hopefully you have something similar as is it not life threatening or scary lol but the waiting to find out is a nightmare.There are keep it closely monitored for any deterioration to my kidneys though,so panic over for now good luck . Update us when you get results x x
I will do, thanks. My kidneys first started failing (then were righted with fluids and drugs) when I was in hospital with meningitis, then again about 6 months after and now, so it could be related as still all within the last 2 years xx
Yeh could be, but the internet should be banned for medicinal purposes lol. Everything is a hundred times worse on Google and I swear I've had cancer ten times lol. I know it's hard but try not to panic, and I'm sure whatever it is , have faith that the doctors will sort it out x x
I'm sorry Alex I don't my friend but shall be thinking of you and am sending a basket of fluffies to help you through it
I am so sorry to read that you are having this really stressful problem at this time, and I sincerely hope that you are feeling as well as you possibly can be today?
It is never easy when you have to wait for test results, especially when the issue is potentially serious and very upsetting. I had a kidney problem a few years ago, and although it was easy to clear up, I certainly understand your sense of trepidation and urgency, after your previous kidney problems.
I sincerely hope that the test results are favourable and that you can breathe a sigh of relief. I was wondering, as you said you had a pelvic exam, if there was any chance that internal bruising could be responsible for the majority of the problems? As these things are not pleasant in themselves?
We will all be keeping our fingers crossed for you and thinking good thoughts for you, and offering you our full support. please keep us all up to date with how it goes.
Hi lipbalmaddict, lol love the name. Sorry to hear of your plight. I have had a lot of pain in my bladder over the last few months and although my urine has been cloudy all tests came back negative. So over the last month I've had a scan which showed nothing but then I had a camera inserted into my bladder and I was able to see on a tv screen what the camera was showing. The walls of my bladder was covered in big red blotches and cloudy urine. They have me anti biotics which I'm taking at the moment. I have to go back in two weeks for a follow up camera job. Why then was my urine tests coming back negative? I could have been spared a lot of pain if they had picked up the infection. I have no faith in the NHS anymore and could tell you lots of stories of negligence witnessed by myself over the last couple of years
Hi Alex, I've been in renal failure once and have had many incidents of kidney stones, but nothing like the long term kidney problems you worry about. I only now how painful kidney troubles can be and I really feel for you. I hope that you get a proper diagnosis as a result of your test and hope very much that it is something very treatable.
Foggy x
I too have had a lot of kidney problems ( three infections in 8 weeks). Had the scans on kidneys and bladder but all normal, except they say I don't empty my bladder fully. I had noticed that my urine had a film on it, urologist said it was stale urine and could be in fact the cause of recurrent infections. I will have to see what happens as it's only a matter of weeks since learning this. I do have a TVT (vaginal tape) to support my bladder as I was incontinent, so I don't know whether this has caused it either ( doctor says it's unlikely) but have read some negative comments on line where some have had to have them removed. Hope you can get sorted soon, it's such a worry.
Hi Alex, I'm not sure whether Fibro has anything to do with kidney problems because, like you, I don't fit the "type", whatever that is, for kidney disease, but I have Chronic Kidney Disease. I have apparently had it for a number of years and was found during routine blood and urine tests and I had to ask what CKD was because I had no ill effects, and still don't. I think the others are right, I would consider changing your GP, no doctor has the right to treat you this way, it is worrying enough if you have a problem without having someone who is supposed to be a professional being rude to you. I hope you get this sorted soon, love and hugs, Linda xx
Hi I have a had a kidney infection for 6 weeks now and all the doctors keeps giving me is antibiotics but I'm scared its damaging my kidney I went out and had a couple of drinks last night and now I'm really suffering with my back today what do I do !!!
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