The kidney connection update

[Cobnut]

Hello again

Thought you might like to hear how I got on when I went to see the kidney consultant this week. When I asked why I had never been told that the GCA had affected my kidneys and damaged them, he seemed surprised. After three years I am still slightly shocked. I asked what next, and he said it could come back. I wonder what that means for me. I suppose that as someone described as having a rare kidney disease, they do not know themselves what will happen so cannot answer and that is why I am taking part in research. I have looked up kidney disease on the internet and was surprised to find that some form of it is not unusual as we get older. I also found out that my diet already banned sugar and now salt is banned as well. I also now understand why I take Microphenolate which he admitted has nasty side effects. As my GP has asked why I am taking these, presumably he doesn't know about the kidneys either. When I tried to get an appointment to discuss this, they were all taken for the foreseeable future. This worries me as I live in rural Shropshire where the GPs are not supposed to be overworked.

Well its my birthday next week and we are off to visit friends down south. The consultant told me to enjoy my birthday and said I could have some cake and wine. Does he know something I don't!!

[piglette]

I have been diagnosed with Chronic Kidney Disease. What surprised me was the recommended diet of reduced protein and increased carbohydrates. Also avocado seems to be a no no. My GP said that as we get older our kidneys tend to deteriorate.

[SnazzyD in reply to piglette]

Probably due to the Nitrogen containing by products of protein metabolism which can build up if you can’t excrete it which isnt good.

[PMRpro Ambassador in reply to piglette]

kidneynews.org/kidney-news/...

How advanced is your CKD?

[Cobnut in reply to PMRpro]

All the doctor would say is that it is under control. He was very uncommital and said I looked well, but blood tests now every two months. He did not mention diet. I looked that up myself. I do feel rather lost.

[Cobnut in reply to Cobnut]

He did confirm it was vascillitus of the kidneys and very rare

[piglette in reply to PMRpro]

I haven’t a clue, from what I have discovered on the internet it looks like stage 3. I still have not had any feedback from any of the GPs, it’s just that the diagnosis was updated in my on-line notes. I had a new GP recently who was fantastic and was going to ask her but she has handed in her notice when I wasn’t looking. We now just have four GPs and an ever changing number of various locums.

[PMRpro Ambassador in reply to piglette]

Have you got a few eGFR results to hand?

There is obviously something rotten in your practice - or was the lady tempted by the lump sum payment to go and set up in a deprived area?

[piglette in reply to PMRpro]

Just checked stage 3 CKD was actually on my on line record, I did not work it out! The eGFR results are on there too. I think there is one female doctor who is putting off everyone else. A really good doctor who ran the practice moved to Devon and it all started then. I may be wrong but I am suspicious. Everyone is complaining about the problems there. Doctors arrive who are like breaths of fresh air and they either disappear or become thoroughly depressed and bad tempered. Since getting PMR I have seen eight GPs and seven different nurses.

[PMRpro Ambassador in reply to piglette]

I wondered what the eGFR results were. You'd automatically have it written you have Stage 3a if you had 3 eGFRs of 59 - whereas it would only be Stage 2 with eGFRs of 60. And by 70 the normal is down to 75 anyway.

This lot

davita.com/education/kidney...

don't say low protein/high carb for Stage 3 ...

[piglette in reply to PMRpro]

My last reading was 50 this month. It was 43 a year ago and 67 a year before that. It was updated as stage 3 when the reading was 64 in 2015 two weeks after CKD was updated so perhaps it was lower before.

I cannot remember how I came across the low protein higher carbs, but having read upon diet for CKD it does seem to be quite strange.

[PMRpro Ambassador in reply to piglette]

Um - I think the usual procedure if there is a low reading is to repeat it a month later etc. You need 3 consecutive low readings (not a year apart) to make it to the next step of investigating the GFR properly - blood test and 24 hour urine collection.

I know you have a seriously dodgy practice but for goodness sake!!!!!!

[piglette in reply to PMRpro]

It was just one reading and it looks like it was updated by a receptionist based on the name which I do not recognise. I did not find out for two years about it as I was not on line and nobody mentioned it. I did read somewhere that they got QOF points for CKD.

[PMRpro Ambassador in reply to piglette]

Not acceptable - I'd be complaining officially. It sounds as if someone needs to do something there if what you said before really is the case.

[piglette in reply to PMRpro]

We have got through 4 practice managers in the last five years, as soon as one arrives they disappear again. I think the people who input the info originally have probably all left by now. People have heard from other practices that there is a problem at mine. My friends all seem to be going to Dr Now a private GP set up near us, in frustration. With a chronic problem it can be expensive though.

[PMRpro Ambassador in reply to piglette]

Over their heads then - to the commissioning lot whoever it is these days, Before they kill someone - if they haven't already done so.

[piglette in reply to PMRpro]

I think they have killed some people, one friend was told she had constipation and died of bowel cancer. There are some frightening stories going round. Our local hospital has been in special measures so they have fired the chief executive and it is now under the auspices of some other hospital which has a different computer system which does not seem to be compatible with my GPs’ practice, so they cannot get half the information. Blood test results are a joke among the nurses as they are always saying they have to be redone, we reckon they are just dropping them on the floor!! In all fairness the nurses at the practice in general have been pretty good.

[Daisychain12]

Why do these doctors think it’s ok to keep the most important person ( the patient) in the dark? It’s outrageous.

[piglette in reply to Daisychain12]

By the way Linda Happy Australia Day!

[whitefishbay]

Sounds like you need a second opinion. I hate to say this as my own amateur doctor but I go on the Mayo Clinic website for health info. Good luck. If it was super serious you would get an apt.

[Fimckenz]

Just a query 're AKI warning stage. I have had 2 of these on my last blood tests. GFR 59 both times. GP said he was not concerned just to stay away from ibuprofen etc. I am 59. Should I be concerned?

[piglette in reply to Fimckenz]

My GFR is currently 50. I would not know I had got kidney problems except I signed on to the surgery’s on line service and so found out I had been diagnosed with chronic kidney disease two years earlier. It had been updated to the system but no one told me.

[PMRpro Ambassador in reply to Fimckenz]

The warnings come automatically - they are a bone of contention on the part of renal specialists (it is a long story!). The warning would have been different if the figure had been 60! Do you have any other symptoms?

[Fimckenz in reply to PMRpro]

I presumed the warning was due to it being under 60? Other symptoms which don't seem to be related are nausea and constantly lightheaded.

[PMRpro Ambassador in reply to Fimckenz]

Have those been checked out? Did the nausea coincide with any particular changes?

[Fimckenz]

It started back in June when it was presumed I was having a bout of labyrinthitis. Horrible. The meds made me feel worse. Eased after two weeks then nausea returned fairly regularly with the constant dizziness. Sent to an ENT who found no problems with my ears and also checked for benign positional vertigo and concluded that was not the issue. I am now wondering if I could have issues with my adrenal glands not waking up. Around June, I was down to 5/4 mg a day and now on 2/3. I am dreadfully bad tempered, feel cold constantly and the horrible fatigue is still with me. Miserable!

[PMRpro Ambassador in reply to Fimckenz]

Hmmm - I don't think it would do any harm to have a synacthen test!!! Not that I need low steroid levels to make me bad tempered...