Newly diagnosed with stage 3 kidney disease

Thanks Kath. I am seeing the doctor next week so will mention the symptoms to him & see what he says.

Hi Helen

I was on iron tablets & my iron went up but it's now gone back down. I am permanently on vitamin D & my potassium is 5.2. My blood pressure is around 170/ 115 pulse 110 first thing, at around noon it maybe around 145/97 pulse 94 then the same later on. I am really worried about the bp. I am back to the dr next week so will see what he says. 

 

Hi,

Yes deffo ask for meds for your BP there are loads of different ones so if like me you don't get on with one type ask to change, avoid candisartan as this makes potassium go up so you don't want that even your afternoon bp is too high and you may have to take 2 different types of bp meds to get it down I did but we are all different so ask to try some ramopril gives lots a dry couch but it is more annoying than anything else you can keep changing until you find something that suits.  Do you exerscise as this helps even if you don't feel like it a 30min walk at least 3 times a week.  My pulse was high like yours at around the end of stage 3 begining of stage 4 (even after morphine when it should of been low it was 120 the surgeons were most alarmed lol) Next your potassium it is high they like it around 4 as a rule. I would ask your Dr if you can see a ddietician for advice for a low potassium diet so this is have boiled potatoes but don't use any veg water for gravy etc, no chocolate, no crisps, chips, wedges, hash brows anything like that, not too much milk or yogurt if you have a yogurt have lest milk its a 1/4 cup of milk or a yougurt a day. You can have haribo though every cloud and all that.  I would research high posassium foods as there are loads more its a really unhealthy diet but it shoudl help lower your posassium then you can ask for a repeat blood test and see if it helps you need to be strict and follow it to the letter it is important.  Now your vitamin D you may need a higher dose so ask for a review, vit D effects calcium levels and such so if that is not right I know you can feel like crap, the easiest way I can descibe how I feel when mine goes on one is perminat flu symptoms but without the cold, all my bones and muscles ache its horrible.  If we can get your iron, potassium and Vit D sorted you will feel a lot better that I can promise.  Your kidneys controls all these things believe it or not so if they are off kilt then you feel pants good news is that you can be made to feel better, I would ask for a referral to a renal clinic though as they underrstand the bloods more than a GP and will moniter you better.  Keep me posted x

Hi Helen 

Thanks so much for all your help. I do feel like i've been hit by a truck most days, all the aches & pains are awful & the fatigue is unbelievable. I will talk to my dr & see about a referral as I would just love a day sometime soon when I can do things that I just can't do at the moment.

I do exercises for my back every morning & walk my dog twice a day so I do a fair bit of excercise. Unfortunately I love chocolate crisps, bananas, yoghurt & take my drinks milky so I will have to sort my diet out, also my bp. I did have an incident last year where my hyperparathroid went over but it went back to normal on the next bt the dr took. Is this part of the same connection with the kidneys, I had a feeling it might be. I have also stopped taking ibuprofen which is really hard as this is one thing that helps with the fibromyalgia.

Thanks again for your help Helen, hope you are well at the moment.

Fran

 

Hi,

Banannas are the worst thing for you lol stop it.  It is a really awful and unhealthy diet to follow but it will help you I promise, its hard to do at first but you will get used to eat.  My work colleagues used to say to me that is a cream egg, yes it is, but you are not allowed cholcolate, are you going to take it off me, err no haha.  What about getting some co codamol from boots and taking one paracetamol and one co codamol if paracetamol don't help.  Someone crashed into me and I was advised to do this and it has just a bit more umph its all trial and error and seeing what works for you that wont reduce your GFR.  Some antibiotics can reduce GFR so just be mindful of this if you ever need to take them always question never be affraid to do this you have a right to clarify.  Yes my hyperthyroid is massive and it is due to CKD and low vit D levels another perk of the illness.  If you walk your dogs a couple of times a day its sounds like you are doing what you can cope with at the moment. If you get cramp have a big drink of water a found when I was rudely awoken in the middle of the night after hopping round the bedroon loke a loon a big glass of water helped.  I know this will make you wee more but at least you wont be in pain.  I remember the weeing in the night stage up and down through the night, I hardly wee anymore now I have started dialysis and some people don't wee at all, that would be weird.  I am ok at the moment had a high phosphate moment but back on the binders so not like the rhino who have cake crumbs in her skin at the moment.  We have our pre op tomorrow for our transplant next week I have a hell of a best friend let me tell you so hopefully all will be well.  Like I said do keep me posted how you get on and it will get better x

Thanks again Helen. I will be careful with the diet. The big drink of water for muscle cramps is good, I will do that when I get any spasms. Good luck tomorrow with your pre ops & for next week. Keep in touch.

Fran x

Helen.

Hope your transplant went well and you are recovering nicely

Hi John, 

Have only had the pre op so far, transplant next week.  Thank you for the well wishes though I will let you all know in due course

Excellent response Helen, I agree with you. I have stage 3 CKD which has stayed at around mid 40's for about 5 years now with a few unexplained drops here and there to about 34. I have no pain or obvious symptoms, I would not know about it if it was not for regular diabetic checks! Good luck to Willowby for a good outcome to current symptoms.

Just seen your post re transplant. Can't see an update so wanted to wish you a successful recovery. 

Hi,

Thank you for asking about me.  Mmm where to start, when you are on dialysis or awaiting transplant you are made to believe that once you have a transplant everything will go back to normal and all will be rosey.  The reality has been very different.  I feel a lot better, within 3 weeks of transplant I had an acute rejection episode (the best type to have so I am told) which was treated and all was well. The thing now is I am still on high levels of anti rejection drugs which are now effecting my liver blood results they are twice what they should be as my liver can't process or cope with the amounts.  My transplant hospital is useless considering it is supposed to be a specialist transplant hospital.  I have been splitting my visits between there and my local hospital who I trust even they are concerned but they can't alter my meds until I am fully with them in December they have raised concerns with my transplant hospital but no reply.  I won't phone them direct as I have no faith in them it has been one bad thing after another,  The operation was ok but the after care is a disgrace there are three people I see and they all tell me different things to each other even going as far to say who out ranks who they are all a joke I don't care who the boss is or who wants to be the boss.  The main thing is I feel so much better and will be better again when I am back with my hospital.  I have so much more energy its brilliant and I am happy despite having to deal with idiots lol.  My hospital has asked me to go and give talks to pre dialysis and pre transplant patients as they agree with me that people are not told how it really is.

Great to hear from you, well done you for getting through this. I guess there has to be a trade off and a balance but I hope you get to enjoy a better quality of life and your liver does not deteriorate any further. You come across as a very stalwart lady, your posts are factual without seeking pity, I am sure many people with CKD will be encouraged by your journey. Keep us updated ok? 

Its a shame that treatment can be negatively affected in less efficient hospitals, when you have serious issues such as you do, continuity of care is the key, I wish you all the very best once you get back under the wing of your local hospital. 

Hi Helen

Sorry to hear about your problems with the transplant. I know what you mean about doctors & who wants to be the biggest boss it is very annoying. I hope you get back with your local hospital soon it is much better when you have confidence in your consultants & specialist nurses. It's great you have more energy. From how you help people (including me) on here I think you will be great giving talks at the hospital. Look after yourself & keep getting better. Fran x

Hi Fran,

Hope you are well.  My ALT (liver bloods) have come down again, I have asked my own hospital and they have explained why so they had a meting about it as there are lots of people with the same issue as me and the reason is when you are in surgery they give you a massive dose on IV anti rejection drug and then again 4 days after surgery they you start taking the anti rejection drugs orally after surgery and they build up and it effects certain bloods the liver results being some of them.  They can also lower your white blood count mine is quite low but no too bad.  This is all a massive learning curve looking at blood results and seeing which are ok and which need careful monitoring it is quite an art.  Hopefully things will start to settle down a bit now but it is all a balancing act and things need to get into their own little rythem.  Take care and thank you for asking after me x

Hi Helen

Good to hear from you. It does sound like some learning curve. Hope you keep on keeping on getting better. I'm having trouble with my bp I'm on Ramipril 5mg which is not taking it down much so they have put me up to 7.5mg now. Had to see the doctor today because i keep getting dizzy spells & my white of one eye was completely red, the doc said it was my bp. Having a blood test tomorrow & seeing the doc again on the 8th so just hope I can get it down. x

Hi, Helen,

As I read so many discussion I found your vast knowledge and experience can help me understand my concerns.

I'm 30 years old man, Asian. I had very high blood pressure 245/150 last June, creatinine was 2.15

At the moment blood pressure is 120/80 (under medication) creatinine is 1.67 uric acid 6.5 (medicine going on) and protein creatinine ratio in urine is 0.2 and urine protein is 57.1 and urine creatinine is 31.1 , I'm 175 cm tall and weight Is 75 kg.

the biopsy report

diagnosis: suboptimal biopsy, however features consistent with IgA nephropathy associated with benign nephrosclerosis .

In that,

Iga - strong positive, mesangium

C3 - moderate positive, granular, mesangium. Are highlighted.

I would like to know, how long does it take to get end stage? Is there any restriction/recommendation in dietary guidelines and exercise? If you try to reply me I would be grateful to you.

Thanks🙏🏼

Hi,

The main thing is to keep you bp under control which you have and the numbers are much better I have to say.  If you have IGA it will be a progressive disease, but your creatinine is ok at the moment, a little high but not alarmingly so at this time and the fact that it has come down is a good thing.  

You have had a biopsy and a diagnosis which is a good thing as now you know what you are dealing with.

Your question how long to end stage, I can only answer that with how long is a random piece of string.  Everyone is different and we all progress at different rates, sadly no one, not even the doctors can answer that question for you.

I would not change your diet drastically unless you are told to do so as it can be dangerous, if your potassium and phosphate levels are ok and you reduce these you can make them too low and this will have the same really bad outcome as them being too high.  You can avoid ready meals, salt, low salt and ibuprofen - poorly kidneys don't like these things.  A lot of information on the internet states low protien but as we leak protien anyway lowering protien does nothing (this is what my neph told me, don't alter how much you eat as it makes no difference) I trust my neph over what I read on the internet as it is not always accurate.  If you excersise this will help keep your blood pressure  under control.  I did HIT (high intensity training, the soldiers do it in army training) at least 3 times a week and this was when I was on dialysis. This helped my bp, my heart rate and my wellbing really.  Research different sites for IGA, I am sure there are people on here with that particular diagnosis so they will be able to give you their experience and also ask your doctor to explain it to you in more detail then you also have a medical view.  Good luck with everything.