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Bad blood

Dembel
Posts: 32
Joined: Jul 2015

It's been a while I've been here.....that's what happens when you live with a RCC partner that acts like an ostrich :-/.

So the summary.....RCC (stage 3, grade 2) and total nephrectomy end of June 2015. NED in October 15 and April 16. However, in April 16 he had a GFR of 62, so urologist recommended a check.
Now in July GFR 48 :-( and also low blood platelets (87). Urologist checked his history and shortly after the nephrectomy he was also at 48 for the GFR, so he said he would not worry too much, but check again after 2-3 weeks.

Our family doctor seemed more worried about the thrombocytopenia but the urologist said all this was not necessarily a sign for malignancy to him.
All great and well, but now I have this ostrich in the house with his head deep in the sand, continuing to bike a lot, but meanwhile being extremely tired (he does hide it very well, but on a 3 day holiday together I couldn't miss it!), and he is waiting for the blood work until he is not so tired anymore (fatigue for him due to very busy times at work).

So, you get the picture I guess.....my question to you, what are your GFR's after total nephrectomy? Is it supposed to get back to the normal values (around 90) that people with 2 kidneys have? Nobody seems to be able to give me an answer.....

And anyone with thrombocytopenia? All I can find is a link with leucemia....

So yes, worried again!

Kidney cancer really is a complex thing!

thanks to all, and all the best to all

Demi

Dembel
Posts: 32
Joined: Jul 2015

Does nobody know which filtration rate (GFR) they have after total nephrectomy? :-/

 

pvob
Posts: 7
Joined: Apr 2011

HI

dont worry with 2 kidneys it about 90.

with one 60 is normal after al its only only one .

as people get older it goes lower thats normal if it goes to 40 it stil works okay but the dokyer can write medication for it on 20 its stil working but it getting more problematic and de dokter can deside to that person on dialyse.

so dont worry the dokter has it under control if you see him he wil proberly take some blood of him to see how the situation is at the moment its also possible it goes up a few points from 48 to 50 or 52.

dont worry dont let it drive you crazy.

regards Peter.

peter

Dembel
Posts: 32
Joined: Jul 2015

thanks for this response.....

About one month after the nephrectomy he had GFR 78, then in April 62, now 48.....reason why the worry came, but you're probably right. Spoke to the doctor on the phone and he basically said the same thing, check again, may vary with some points and anyway with 48 no candidate for dialysis, and also no reason to believe there is some new malignancy here..... The low thrombocytes seems to worry the doctors a bit more, but there also, wait and check and see......

I will do my best to remember your last sentence, don't let it drive you crazy.....I think it 's THE most important thing with RCC but definitely not always easy!

 

ftgtiger
Posts: 9
Joined: Jan 2016

I had a nephrectomy 9 years ago.  Since then, my GFR usually runs around 65-70. A couple of times, it dropped to in the 50's and once in 40's.  Doctor said not to worry unless it was repeatedly low, that being dehydrated could cause it to drop, and that there are other factors besides gfr that indicate kidney function.

 

Allochka's picture
Allochka
Posts: 946
Joined: Nov 2014

You've mentioned link to leukemia, so I guess you had been googling. Please stop immediately! I an a hypochondriac unfortunately, so ai know what an evil Dr.Google can be and what a misery it brings to us! EVERYTHING points to some kind of cancer there :-(

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