Worried

[barbs188]

Just back from clinic apt hubby told his creatinine level has risen from 297 to 361 and his level has dropped from 19 to 15.

This is end stage

[Mgt8]

Hello Barbs,

It does hit you hard when you suddenly realise you're at end stage....... that was several months ago for me.....

I'm now egfr 8 creatinine 509 and still not yet on dialysis. The wheels are in motion and the systems ready to support me when the time comes..... but not yet. I'm determined to have one more holiday, dialysis free and my consultant says it's all about how you feel. 

At egfr 15 your husband may well have many weeks or months yet before dialysis is needed. Is he on the transplant list too? I've just finished the work up and am waiting for the result of those tests. 

It's an old saying but taking each day one at a time really helps...... and a positive approach to life helps me greatly.

Wishing you well

Margaret

[barbs188 in reply to Mgt8]

Hi Margaret 

Thank you so much for your reply has put us both at ease a little more. 

We had a good talk last night and a chat with the specialist nurse this morning and are a lot clearer now with the process etc. 

God bless you and I wish you all the luck in the world x

[rabbit01]

Sorry to hear that. It must have been a huge shock for you both but think positive as he might pick up a bit yet. Funny old things the kidneys and I find even getting a cold can knock me for six for a couple of weeks and no doubt during that time my egfr would be very low if I had a blood test.  I know people that have gone from lower than 15% and bounced back to 20% or so. Remember the e in egfr stands for "estimated" and it is not an exact science. Can I ask how long was he at 19%. I am currently at 18% and have been since being diagnosed this time last year.

[barbs188 in reply to rabbit01]

He has been stable for 6 years he was 21 then dropped to 19 and once to 17 but came back. Illness or stress does seem to effect the results so we're hoping he can bounce back. Speaking to the nurse this morning she's advised is that as its the first real downwards spike they are putting him On the register for transplant. 

Good luck with your journey I wish you all the best x

[Marion1]

It is a blow when you know that dialysis is looming large. I am on PD and the transplant list and remember so well the last 6 months or so before I started dialysis. It is so important to stay positive and know your renal team will look after your husband well. It seems such a life changing thing but you and he will be surprised how much you can achieve once the 'dust' settles. Good luck 

[sylla123]

Hi Barbs .... my husband started Dialysis at 6,  12 months ago ..   he was first diagnosed 2003 .. and his team kept him going until last year ...   everything concerning the dialysis was going smoothly and we had become to accept the different life style ..    that was until he developed Discitis  in his spine , so from then on life has become a nightmare .. his spine infection is now down  , but he is still in a lot of pain ...   see my post from two days ago for further info on that ..   Your husband could go on for quite a time at 15 ..  and it could shoot back up again , lets hope so !

[barbs188 in reply to sylla123]

Thank you so much for your reply. It is a worry when someone you love is in pain. 

I will read your posts. 

Hope all goes well for your husband. Sending best wishes to you both x

[patty48]

Hi all. Hate to sound dumb about all this. New and trying to get as much info as possible.  U speak about 'levels' what are they or is there a link someone can perhaps send me.

[Sezyboss in reply to patty48]

Hey patty, it's not a dumb question at all. The levels being talked about is the creatinine and eGFR, these measure the kidney function. The higher the creatinine, the less your kidney are working but the lower the eGFR is. Here is a link that will explain it a little better, hope it helps nhs.uk/Conditions/Kidney-di...