Hi all. I have just been to a renal consultation and wanted to ask my DR about something my radiologist said when I had my kidneys scanned. The radiologist mentioned one of my kidneys had a blockage but it was ok because it hadn't got any worse than it was at my last check. What blockage? No one had told me about this. It turns out that when I had a large stone removed several years ago damage was done during one of the sessions of "nibbling" away at the stone. That kidney has now shrunk due to it being more or less useless. As this means I now only have one properly functioning kidney I am surprised that I wasn't told. I am also surprised that it hasn't been checked more often. I now have two 1cm stones in it. I have now asked to have it scanned regularly to check that my tablets do their job and dissolve them. A passing comment by the radiologist led me to finding this out, I can't help wondering what else the Dr's don't bother to tell me.
ok rant over. hope you are all having the best day you can
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suzannah16
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FFS is all I can say (sorry)....RANT some more...seems like some doctors don't realise organs are fairly fundamental to life...GRRRR....at least you have a canine on alert, can she learn to detect kidney stone growth? (stupid question, a dog's nose is 4 million times more sensitive than a human's, and they have EMPATHY)....stomps off.. XOX
thanks pal. this was supposed to be one of the good docs. feel too tired to be angry.
who needs Dr's when I have everyone on here? As for Mandy the only thing she can smell is meat cooking. I think she can tell i'm not 100% because she is giving me pitying looks as I pant so much when out walking. she will be offering me a piggyback next :). blood results will be in tomorrow morning. Oh sugar, no time to check them because of early podiatrist appointment. may go in my pj's. why give me such an early time? I will message you tomorrow evening.
Lots of Mandy hugs, of course they can tell and they worry....podiatrist in PJ's is perfectly fine...just don't go to Sainsbury's, they'll throw you out xxx
You could sit down with my daughter and have an almost identical conversation. She is utterly pee'd off after her THIRD stent to try to rescue the kidney, Had the urologist done things properly originally he'd have done the surgery he is now pushing her to have, just after starting a new job and university course, which will require at least 4-6 weeks sick leave. She is not a happy bunny and ranting too.
It took 6 or 7 lots of surgery to get the one large stone out. in and out of hospital every other week. it totally drained me. if they knew it was likely to damage the kidney why waste so much time having me in and out of hospital? each visit I had anesthetic for between 5 and 6 hours. I wish they had just cut the kidney open and taken the stone out. but to not tell me it was so damaged as to be useless that is just not right. my muscles had wasted during the months I had the procedures so I was left wiped out at the end.
Grrrr this is terrible Susannah - I’m really pretty disgusted on your behalf. Hope Pjs in Morrisons did the job. Hugs, TT x
thanks TT. can you believe it took 5 hours yesterday to Dundee and back plus waiting for parking and late running consultant. ended up stuck in rush hour traffic. then up early this morning for podiatrist. I need to sleep for a week
Oh my gosh this is awful! What a terrible time you have had. Can you ask to have copies of the letters that (eventually) go between the consultants and your GP? For some reason I seem to get these even though I haven't asked for them, otherwise I wouldn't have a clue as no one seems to have the time to explain anything. Sorry I don't think it works retrospectively, but you could ring the consultant's secretary and ask? You have the right to see the letters I think. Look after yourself and that good kidney!
nothing was mentioned in those letters other than that I have kidney function problems. nothing to say how bad or that it was permanent. thank goodness for chatty radiologists or i'd be none the wiser.
Wow! That's even worse, poor you. I did see over my GP's shoulder that on her copy the consultant added bits on "for her eyes only" but I am surprised no one told you, that is really bad.
info seems to be available only if I ask the right questions and without all the facts how can I ask the questions?
I think in your shoes I would phone the complaints and feedback team and tell them what you’ve told us. Nothing about this kind of paternalism will ever improve if we don’t complain although I know it’s hard work.
But what if you were going abroad and needed health insurance and didn’t know one of your kidneys was defunct for example?
The thing is that they shouldn’t be able to have “for your eyes only” to GPs. But when I wrote to the non executive director on board of NHS Tayside in charge of person centred care - to object to the policy of only receiving cc of our clinic letters via a GP - the response was rather pathetic.
He agreed that in principle everyone should be included in this kind of information and receive copies of all letters in an ideal world. But in reality he said some people and their families aren’t able to cope or don’t want to know this sort of thing and would panic If they received letters and information pertaining to their conditions.
But he then added that the objective was for the default to be that we are included in this information - rather than the other way around as it seems to be at present!
I can’t believe our rheum didn’t tell you though? Do you think they have you down as too anxious to handle this information yourself perhaps? I’m often wondering if they withhold a lot about me now because they think I’m too informed and have “heightened health awareness”?! X
rheumy has never discussed my kidneys, I hope they don't have me down as a worrier although none of my Dr's seems to offer info about anything unless I ask the right question. got rheumy mid june next so i'm going to try to be more direct and ask if there is anything i'm not being told. plus she is going to be quizzed on my neck x-ray results. as for being too anxious one Dr said I was stoic so probably not.
I just asked about anxious as it’s such a strange thing not to be told?
GPs don’t usually volunteer much unless we bother to ask them for info first in my experience. Mine are also very shruggy but I think this is just because they are falling apart as a practice just now - I was even told I couldn’t book a follow up appointment with anyone yesterday because they aren’t booking ahead due to GPs being off with stress, sickness and annual leave. Eek - comes to something when stress and ill health of GPs gets so bad can’t even book a month ahead as GP requested I do?!
I thought our rheumy might mention to you given that Lupus can cause kidney involvement. I guess she thinks you know. X
could be. I was only told kidneys were not functioning at full capacity. found out about stage 3b kidney from papers requested from GP. I had no idea one was defunct or as good as until yesterday. XX
Hi Suzannah16 so sorry you are going through this. I went for
a routine check of my medications and was asked by my doctor how I was managing with my oesteoarthritus in my hips I didn't even know I had this ailment apparently I'd had it for over 2 years before they told me. It was picked up on am MRI i'd had done for a collapsed disc in my lower back but no one thought to tell me this was 10 years ago Ive since had one hip replaced and waiting for my other to be done when my haemoglobin levels are up and stable. Like you say how many more things do they not tell you we are not mind readers just tell us the truth as soon as you can 🌻
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xxx
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