Blood results

My dr told me this was half the function as it should be at 90+ and according to the function table here it puts me on level 3b? I'm confused by your response? 

Hi,

You have put your creatinine level at 44 which is good the lower the better, if you mean your GFR (kidney function) is 44 then you are in fact at stage 3b.  Again anything over 60% is considered normal.  If your GFR is 44% then you do have reduced function, I can only go on what is writen, sorry to have confused issues , creatinine and GFR are two completely different things, usually the lower the GFR the higher the creatinine.  With a GFR of 44 your creatinine wont be 44 though it will be higher.  Now we have cleared that up I remained at stage 3b for many years, some people never go from that.  Your kidney problem sounds like it runs in your family like mine.  You could remain at that stage for many years but if you do deline don't be scared things have come on alot.  When I got to around 19% GFR I was told I would be on dialysis within 18 months I lasted 7.  I won't fib even though I have known all my life I would have to have dialysis one day when they actually say its time I was still frightened but once I got my head round that bit of the journey it was ok.  Dislaysis isn't so bad I chose peritoneal dialysis which I did myself at home each night.  It suited my lifestyle as I work full time, have children and also run our business and it wasn't so bad.  I did that for about 2 years this is how long it too the hospital to test my friend for her to give me one of heer kidneys how lucky am I.  They don't tend to start talking about dialysis or transplant (going on the doner list, or live doner options) until you reach about 15% function so you have a long while to go yet all being well.  Even then if you feel ok they don't start dialsysis at this point, I was 6% when I started mine. Some things to look out for in your bloods when you get the results are as discussed your GFR, your creatinine, your potassium levels, your phosphate levels, your iron and haemoglobin levels.  We have already discussed your GFR and creatinine, your potassium should be no higher then 5, if your phosphate is high you will know about this as you will be very itchy (you can have phosphate binders to help this) and for your blood levels they should be no lower than 10 which is recorded as hb100 in your results.  If it goes low you may be asked to take iron tablets but my neph told me if you are on them for 3 months and they haven't helped they are not going to so i had an iron infusion and some EPO this helped. I hope this helps

Thank you Helen for the clarity it is my GFR level, still trying to get head round everything despite my personal experience of family . Can you advice what the next part of process would be re testing etc. is there any chance of it reversing from here? I'm so pleased you got transplant Helen my mum and husband were not so lucky but I guess we are all different. Are you well now? Xx

Hi,

You will just be monitored now more than likely every 6 months at this stage.  I don't know if it will reverse it depends on the cause if it is chronic rather than acute then no it more than likely won't go back up.  Do you know what has caused the decline in your kidney function, have you had a diagnosis on this yet as CKD has many causes it would be helpful to know the cause, is it the sam as your mothers condition?.  The hospital won't do anything other than monitor you until you get to around 19% GFR thats when they will ask you to think about dialysis and start the process of testing you to see if you are suitable to go on the live doner list, you are a long way from this yet though. I do feel better but my creatinine is all over the place at the moment so hopefully that will stabilize soon, but I do feel so much better and yes I am very lucky indeed.

I'm back at docs for bloods rerun tomorrow and will see doctor on Friday for blood pressure and results of bloods so that will be my opportunity to ask questions. My daughter who is 31also has her fathers genetic condition pkd, we are about to have discussion re my granddaughters getting tested now. So this is a blow to the. Family. I am trying to keep positive and hoping for the best but really don't think this is a coincedence that my mother had kidney failure. I have a lot of knowledge about this condition, unfortunately, but just didn't have as much about blood levels etc. thank you so much for your support Helen. And I hope you keep well on your new journey. Xx

Hi,

Right so your condition runs in your family, the likely hood is then being honest yes it will progress.  A lad I work with has the same thing and his Mum, she had a kidney transplant just before me and was only on the list for 2 weeks so that is good, i was on it 2 years and only got one call (you have to go on it even if you have a live doner just in case). Because my condition is genetic I asked about getting my children tested and the nephs said no as it will effect their chances of getting a mortgage when they are older but I don't care about that I had to know if they were ok, my daughter had bloods and urine as she was older and she was ok at the time and my son just had urine tested as he was too little for the blood both look ok (blood and protein are the starting signs in my issue) I will still get them tested as they go along to make sure they are ok I  am their Mum its my job to look after them.  It is especially scary for you at this time as you have seen what can happen and you have lived through it.  Medicine has come on along way you need to hold on to thats.  You will help your kidney function if you keep your bp under good control, avoid salt especially low salt and also ibuprofen.  The only thing that is really safe is paracetamol.  Make sure you have flu and phneumonia jabs and keep an eye on your potasiium and phosphate levels and never change your diet unless you are told to do so as lowering the above levels can be just as dangerous.  Eat healthy and varied and try and do a bit of exercies even if it is a bit of walking or swimming with the gardkids it will help you.  Please keep me updated when you go to the drs to get your results ask what your creatinine is this is accurate where GFR isn't an exact science and is only a best guess and lots of factors can effect it.  Good luck I will look forward to hearing from you when you get your results.  If you need to chat in the meantime let me know, I am not and don't claim to be medically trained or an expert but it is good too have people around you that have been through it.  I made some lovely friends in hospital and we always message each other to ask my wound looks like this is it right what is yours like?  lol it makes it less scary and a little easier to get through xx

Thanks Helen, it does help to link with people who have or are on the same journey, even though we are at different points in that journey. It also helps to talk to someone out with my family that are not linked to my emotions lol. Looking at the blood results the dr gave me I think my creatinine is 117. Janice

Hi,

A creatinine of 117 is ok there is no normal amount as we are all different but anything under 150 is classed as ok, this is after transplant.  Pre transplant they just role with it but keep an eye on it like I have said mine was 600 before I was on dialysis. As your kidney function drops your creatinine will increase it is just how the two things work but at the moment both are not bad I hope this helps slightly.  I agree about the family thing sometimes it is easier to say nothing in order to protect them you are a Mum and this is natural x

Had scan yesterday was told the wall around my kidney was infiltrated, he said they both measured at 8. Said it is more than likely I've inherited a genetic condition from my mum who died from renal failure. I'm at the drs tomorrow for all my results not looking forward to it trying to keep positive but struggling a bit at the moment.

Hello Jan,

Right I know you are very scared due to what happened to your Mum, however in 18 years medicine has come a long way and you have to hold on to that or you will drive yourself potty.

Have you had any results yet and if so what have you been told, it is unusual for a person that carries out a scan to give out such details, they usually remain tight lipped to avoid scaring you.  This does not seem to be the case at your hospital.  I hope you have had good news.  Please let me know the results when you are up to it and for now I will send you a great big internet hug x

Got confirmation of diagnosis stage 3bntoday, gutted. GFR is down 2 points since last week and creatinine is up to 123 from 117, concerned of the dip in one week ...any thoughts?

Hi Jan,

Lots of things can effect your results do you have a cold or any type of infection at the moment? I wouldnt be too concerned about your GFR as it is not accurate. Your creatinine has risen but the rise is less than 10% but you need to get yourself in the mind set that your GFR will drop and your creatinine will rise, it is still quite low.  Are you being seen by a neph now or are you still under your doctor? At this stage you need to be under a neph and I would say because of the rise in creatinine bloods done in 2 weeks then two weeks again to see if things are still on the rise if they are stable go to 3 monthly but if not monthly visits.  It is up to the doctors really this is just how I was monitored and it was amended as needed. It could be (and I don't know for sure, no on does) that you are going to decline again you need to get your head in the right place to deal with this. Keep me posted on your next steps.

Thanks Helen, I've no infection or cold etc. I had a really emotional day when I was told the news, thought I had prepared all week in lead up but the decline in a week worried me, wasn't prepared for that. Bit better now I have lots of positive friends and family boosting my morale and looking at positives. Referred to neph for urgent appointment and bloods scheduled again for two weeks. Xx

Hi,

Each step is scary no matter how much you try and prepare its natural to be scared even if you think you have got your head in the right place.  I am glad you have all your friends and family they will really help you mine did/do.  Glad you have been referred to a neph and you will be having bloods done again in 2 weeks.  You should get a quick neph appointment they don't tend to mess around making people wait for them.  The neph will more than likely get you to do a 24 hour urine collection as this gives a more accurate picture of clearance figures.  Please keep me posted and if you need to speak you know where I am xx

Thank you Helen it is so good having someone who has and is going through this and is not emotionally connected. Will keep in touch if you don't mind. Xxx