has anyone's renal specialist told them how long there kidneys are expected to last mine has told 1 to 2 years 2 specialists have told me this just wondering if anyone else has been told
I have been told that as I am losing function by around 2-3% per year, mine will last around 5 years. It's only a guesstimate. I'm trying to do the best I can by keeping BP under 130/80 and making sure I don't get anaemic. I also watch my protein intake.
Davey, I've never been given a time limit but get told that to try and get my high blood pressure under control or it will accelerate the process.
I don't really understand how anyone can give an expected time limit as it must surely depend on the actual problem with the kidneys that is causing them to deteriorate, plus the fact that everyone's body is different with different lifestyles etc which must have a bearing on the situation. Plus there are some people who when diagnosed with reduced function at whatever stage of CKD, find that they can remain at the same stage for many years before dialysis.
Have you been told the reason for your deteriorating function?
just the way my egfr is down and my creatine is high blood pressure is great now
Hi davey, I'm sitting at 11% function just now and my decline is fairly linear, but it could drop quicker than expected ted. I've also been told how long it could be on my current decline, but other issues such as dehydration or severe bout of diahrrea(sp?) could temporarily drop my function which take me into the danger zone. Just a case of taking each day as it comes for me.
My specialist also told me mine will last one to two years. Well, I think we should stop worry much about our condition.
I think your egfr is better than mine. Mine one about 20-22 currently. You still working? Sickness is our life so just accept it. But life still have to carry on. I have decided back to work full time but not keep worrying at home. Wish You good luck!
Hi,
They can only guess, I was told 18 months-2 yrs and mine lasted 7 months.
Hi Helen
In this 7 months, how much your egfr drop ? From what levels drop to what level?
Hi,
I need to put this in perspective so I was diagnosed at 13 and remained at stage 3 until I was 37. At 37 I started to decline from the April to the Novemeber (when I started dialysis) I dropped from 29% to 6%. I shocked the neph's even they didn't expect me to go down hill so quickly, so with this in mind I would say I am the exception rather than the rule. In my unit I am the strange on, if I have meds and the leaflet says there is a side effect I will have the opposite, for example steroids you gain weight, have a moon face and eat loads, I am the complete opposite of all the side effects lol I don't do it on purpose it just happens this way. Just because my CKD went this way doesn't mean that everyone's will, we are all different. My one piece of advice is to always expect the unexpected, don't take it for granted that you will have the two years on the other hand you may have more. Don't get cross if you are given a plan and it changes three times the next day, its the nature of our disease. On a good note I went through PD without a problem and have had a transplant, that has come with its ups and downs but I feel so much better. You need to live each day and focus on the future, I know better than anyone how hard it is to get through but I promise you will get through it and it is better at the other side. Good luck
Hi Helen even meening to mail you to see how you are after the transplant. Hope all is well.
Helen, good to hear how well you are doing - keep it up!
A very long time ago you recommended Moxonidine to me as I wasn't getting on with so many different BP meds. Well, after 3 months with a 24 hour daily itch, scratching and drawing blood, a skin biopsy has pointed to one of my BP pills. So yet another pill has been stopped! At present doubling up on the dose of the remaining pill, and have a prescription for Moxonidine. Don't like the fact that it's a fairly recently introduced drug nor reading in one NHS article that it is good for all structures of the kidney, and then later in the same article warns not to be used in moderate to severe kidney disease, or in patients with Glaucoma. Well, my eGFR is about 38/39, creatinine 119.......and I have Glaucoma. So I'm holding fire on starting it until I next see the kidney consultant.
Lots of good luck wishes to you - you are a brave and helpful soul to so many others on the sight.
do u have any symtoms to drop so fast from 29 to 6%. but you are really very brave. i hope i can be like you. yes, i am thinking to do PD as well.
Hi,
Thank you for asking yes I am getting there, had a bout of mild rejection about 3 weeks after the transplant but that was sorted with 3 days of IV steroids. The anti rejection meds are a balaencing act and although I told the hospital for 8 weeks that mine were too high they ignorned me then I was back in hospital with tacro toxcicity (they were poising me like I told them) they still insisted it wasn't that but reduced my meds and wrote toxcicity on my discharge papers grrrr. You just have to stand your ground. Its not all bad and I feel so much better I go to bed later than 8.30pm now lol so don't have to rush to get people tea and bathed before a certain time. For me it is not what I expected I was lead to believe that you had a transplant and all would be great, again for me (not everyone) I have encountered these issues that no one thought to warm me about. As a result of this my local hospital (not the transplant hospital who are incompitent) have asked me to give talks to pre dislysis and pre transplant patients, which I think is a good idea. i am lucky that they realise that they may have read the book and taken the exam that they respect the fact that they don't actually know. If I ccan help people I will. How are you keeping ?
Hi Mrs O,
I used moxonodine for 4 years the last year with GFR 6%. A lot of BP drugs are not good for the kidneys which is quite confucing for us as the kidney patients I agree. I suppose you will just have to do what is best for you in the end and what suits you and makes you feel ok. Candisartan worked well for me but it made my potassium really high so that had to stop. It is a right pain trying to find a meds that helps, doesn't make you feel like crap and does more good than harm. Good idea to wait and discuss with consultant xx
Hi,
Thank yo for your kind words but I am not brave I just get on with it. My friend is brave on the other hand as she risked her life to save mine, now that is what you call a friend. Symptoms now I didn't really have any apart from the usual low iron which was sorted with an infusion and some EPO now and again once I got to about 11% I was breathless and really tired oh and I couldn't eat much to my poor husbands dismay. I couldn't even look at the food without wanting to be sick never mind putting it near my face. I can't tell you much about HD except I visited my local unit spoke to some of the people that did it, I researched it and decided it wasn't for me I was too busy lol. PD was much better I had my life still and I was lucky I had no restrictios food or liquid and no peritonitus if you do exactly what you are told you won't go wrong. If you want any info from my personal experience of it I would be happy to go through it if it helps you to make your decision.
Thanks for replying Helen, on the whole I'm doing ok, I think! Was at 11% a couple of weeks ago, I was diagnosed at 18 and the downward function has been linear since first check. I realise it could drop like a stone. I'm getting out of breath easier and tiered after being out of bed for a few hours, but I try not to let it bother me. Emotions are running wild, sometimes I'm scared, my brother is lined up for a live diner whenever required, docs looking at pre dialysis for op so not too far away. Other days I'm angry, because I still have an appetite, I'm not nauseous ever, I'm not, not well, then I see the specialist and I drop function again. Frustrated best sums it up. Loved reading your reply as I've been told I'll be better after the op but I don't feel unwell. It's good to see/hear real feedback.
how long you from 18% to 11%?
hi my kidney function fluctuate last year since i was around 220-250 since April to Dec. but my last year energy level and this year is totally different. last year i do not have IBS and i do pass quite a amount of urine during day time. but this year i realize though kidney function is about same, but my urine all started aftter 4/5pm, not sure because i keep passing stools during daytime or others reason.
but night time and midnight, i do pee quite a lot.
2nd, i am currently under Iv Cyclo and high dose of steriods, 45mg. and i feel neasea, but i still eat quite a lot and have appetite. just after eating feel bloated and neasea. then my hands and legs do have bit swollen.
but once i raise up my feets, then the next day it will be all right. so i still think this is manageable and i wish to continue to work.
my plan is actually i can work full time this year till Nov , then if started to dialsysis in dec or next year will be the best. though dialysis is something unfortunate, but i hope i can do well in dialysis then also meanwhile working.
and wait for deceased donor kidney.
our waiting time for deceased donor kidney is about 9-10 years.
i scare pain and my vein is very thin( due to lupus and long term steriods 23 years) so i think i probably will do PD. but i have Irregular bowel syntoms. so not sure whether i am suit for PD not. i hope i can do PD.
thank you
yeh
Sorry, misunderstanding. I was diagnosed at the age of 18, I'm 45 now. Since I've been diagnosed I've dropped roughly 3-5% function per year.
Hi,
Glad it helps also glad you are still well that is always great to hear. Regarding your tiredness and breathlessness just get them to see what your iron is and your HB count as at this stage you may benefit from a bit of an iron infusion and a shot of EPO. They like HB to be around 10 or it may be reported as 100, it takes about two weeks to work then you will feel better and you can do the EPO yourself at home, just take aim to your stomach, pinch and stab. Its not so bad lol. It is a very frustrating time I am 100% with you on that. The reason you feel not bad even though there is a drop in function is cos our bodies are wonderful things and each time there is a drop we adapt to the new way we now are so you will notice subtle changes but our body is good at sucking it up, very clever don't you think. You will have a rollercoster ride ahead of you make no mistakes but at each stage in your journey you will feel better, even n dialysis if you have to have it give it 4 weeks and you will feel so much better and when you have your transplant well I can stay up til midnight now if I want woo hoo and when I wake up in the morning I feel like I have actually been to bed. Please keep me posted on your journey is it nice to hear how everyone is getting on and like you said its nice to speak with people who are going on the journey no matter which bit they are at.