. Creatinines 522 and urea's 30 so they dont think it'll be long till dialysis.Being transferred to adults too which is a bit scary!!!
Just needed a bit of a moan tbh
Lor
Fed up =(
Moderator: administrator
Fed up =(
I'm a bit fed up atm. Been to hospital today with my dad whose giving me one of his kidneys, we know he's a perfect match tests all came back good. But atm my body is untransplantable as the consultant put it. Its a lot dissapointing cos they hoped id have tx before dialysis, but now they've said If my level of protein leakage doesnt drop, Ill have to have a double nephrectomy to stop it alltogether. . Creatinines 522 and urea's 30 so they dont think it'll be long till dialysis.
Being transferred to adults too which is a bit scary!!!
Just needed a bit of a moan tbh
Lor
. Creatinines 522 and urea's 30 so they dont think it'll be long till dialysis.Being transferred to adults too which is a bit scary!!!
Just needed a bit of a moan tbh
Lor
they've said around 10% I hate how you never get a definitive answer out of dr's!!
I've never been a textbook case though, just my luck! They;ve had to bend the rules a lot with parts of my treatment, but they said this is one thing they cant. He did say though if my urea hits about 35-45 i will start feeling like crap and then they cant hold out any longer for protein to drop ill have to start dialysis.
How do you feel, what wiht your gfr bein only 12. Whats your urea?
I've never been a textbook case though, just my luck! They;ve had to bend the rules a lot with parts of my treatment, but they said this is one thing they cant. He did say though if my urea hits about 35-45 i will start feeling like crap and then they cant hold out any longer for protein to drop ill have to start dialysis.
How do you feel, what wiht your gfr bein only 12. Whats your urea?
im not sure what my urea is. i just feel tired and cant be bothered with anything, been feeling sick a bit more often lately too. sometimes i think im just exaggerating but then i think maybe im so used to feeling like this that its just like normal, know what i mean ? im on epo and i dont think its really doing anything for me, my hb was 10 though so i suppose i dont really need the epo so it wouldnt make that much of a difference. maybe im just tired cos i do alot. 
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amanda in CA
- Posts: 1806
- Joined: Fri Apr 23, 2004 5:14 pm
- Location: Georgia, USA
to Helen
If you are pre-dialysis that is the feeling that you get because of the toxins building up in your body. Is there any reason why they haven't started dialysis yet? I suggest that you talk to your neph and tell them that you are feeling this bad, maybe they will start you on dialysis sooner. You will certainly feel much better once you have started and the toxins get cleared from your body.
Lor Lor
Wishing you all very best starting dialysis etc know not easy for you ....
Thanx for txt to Rach, etc you know shes there to help you any way she can etc....... Almost exactly same as Rach was and really hope protein leakage does settle down for you to be ready for transplant etc...Dialysis may also hopefully make you feel better health wise too at moment.
(((hugz))) Elaine & Rach xx
Thanx for txt to Rach, etc you know shes there to help you any way she can etc....... Almost exactly same as Rach was and really hope protein leakage does settle down for you to be ready for transplant etc...Dialysis may also hopefully make you feel better health wise too at moment.
(((hugz))) Elaine & Rach xx
Thanks.
Yea it helps to talk to rach cos she's beens through what im going through now
and lol marier i just get scared of adults, im petrified of one of my consultants on the childrens ward so god knows what ill be like on adults.
Im sure once im adjusted ill be alrite it was just the sudden shock of your leaking to much protein nowt we can do bye bye i was like woah what argh! haha
Yea it helps to talk to rach cos she's beens through what im going through now
and lol marier i just get scared of adults, im petrified of one of my consultants on the childrens ward so god knows what ill be like on adults.
Im sure once im adjusted ill be alrite it was just the sudden shock of your leaking to much protein nowt we can do bye bye i was like woah what argh! haha
protein leakage
Hiya, we got informed by Transplant Consultant & Nephrologist that if you keep leaking lots of protein then there is a VERY high risk of losing the transplanted kidney to blood clots etc as the protein is linked with blood and clotting etc too. From a healing point too having a low protein is not ideal and can drop lots depending on the disease.
Really hope adult renal unit will be ok for you Lor Lor, and will welcome you. Sometimes its the unknown that is scarey. Rach quite enjoyed it on adults although like anything there will be differences from paediatrics.
Let us know how you get on Take care Elaine & Rach xx
Really hope adult renal unit will be ok for you Lor Lor, and will welcome you. Sometimes its the unknown that is scarey. Rach quite enjoyed it on adults although like anything there will be differences from paediatrics.
Let us know how you get on Take care Elaine & Rach xx
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Julie
Hi Lor,
You don't say what the cause of your kidney failure is but just to add a bit of information from my experience, there's a school of thought amongst some nephrologists that say it's better to be on dialysis for a period of time than to have a pre-emptive transplant, depending on the cause for your kidney failure, e.g. if it's one of the auto-immune diseases such as FSGS.
They believe the disease needs time to work it's way out of your system and run its course.
This was certainly the viewpoint of my husbands neph. My husband had a very virulent form of FSGS which meant he went from 75% kidney function to 12% and dialysis in just 9 months. It was steroid resistant too, i.e. didn't respond (go into remission) on high doses of prednisolone.
His neph would not have considered a pre-emptive transplant whilst it was clear the disease was still rampant.
3 years on dialysis and he has now had a transplant from his mum in January of this year and so far there is no sign of the FSGS coming back in the transplanted kidney.
At St. Georges hospital where he had the transplant, they told him they had had 3 cases in the previous month of FSGS returning within hours in pre-emptive transplants and were reviewing their policy on allowing pre-emptive transplants for patients with auto-immune kidney diseases.
Makes perfect sense to me.
Good luck with your own kidney journey.
Love
Julie
x
You don't say what the cause of your kidney failure is but just to add a bit of information from my experience, there's a school of thought amongst some nephrologists that say it's better to be on dialysis for a period of time than to have a pre-emptive transplant, depending on the cause for your kidney failure, e.g. if it's one of the auto-immune diseases such as FSGS.
They believe the disease needs time to work it's way out of your system and run its course.
This was certainly the viewpoint of my husbands neph. My husband had a very virulent form of FSGS which meant he went from 75% kidney function to 12% and dialysis in just 9 months. It was steroid resistant too, i.e. didn't respond (go into remission) on high doses of prednisolone.
His neph would not have considered a pre-emptive transplant whilst it was clear the disease was still rampant.
3 years on dialysis and he has now had a transplant from his mum in January of this year and so far there is no sign of the FSGS coming back in the transplanted kidney.
At St. Georges hospital where he had the transplant, they told him they had had 3 cases in the previous month of FSGS returning within hours in pre-emptive transplants and were reviewing their policy on allowing pre-emptive transplants for patients with auto-immune kidney diseases.
Makes perfect sense to me.
Good luck with your own kidney journey.
Love
Julie
x
Hi Julie
Thats my understanding of fsgs too, I'm lucky that it hasn't reoccured and the chance gets less so as time goes on but there's always that chance. Mine wasn't as bad as david's i was losing around 1% a month but steroid resistnat just like his. Was told that tacro is the best anti-rejection drug to prevent it coming back.
Just hope it doesn't but then could reject it at any time too so dont really worry about that.
Hope u are well
Mike
Thats my understanding of fsgs too, I'm lucky that it hasn't reoccured and the chance gets less so as time goes on but there's always that chance. Mine wasn't as bad as david's i was losing around 1% a month but steroid resistnat just like his. Was told that tacro is the best anti-rejection drug to prevent it coming back.
Just hope it doesn't but then could reject it at any time too so dont really worry about that.
Hope u are well
Mike