estimated time

just the way my egfr is down and my creatine is high blood pressure is great now

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.

Thanks Helen.  What a minefield this is, what with trying to get high blood pressure down to avoid heart attack/strokes/kidney disease whilst at the same time trusting and praying that the medication itself prescribed to avoid these worrying events won't in fact hasten decline of my sole kidney, and, as you say, make you feel like crap meanwhile - couldn't have put it better myself, Helen!  Go well, Helen.xx  

Hi,

Are you in a different counrty as your kidney function readings are not recorded in a way we have them in the uk?

I will try and answer all of your queries, regarding urination as the kidney's fail you will wee more especailly at nighttime this is a pain as it disturbs your sleep.

You will have nausea and swelling of the limbs due to the steroids, they are well documents side effects sadly.

You plan to work until Novemeber this made me chuckle, in the nicest possible way you can plan all you like but don't expect it to happen how you want it, it rarely does.  Even when your kidney function drops if you have no symptoms they will hold off on dialysis until necessary.  Your kidney's will have the last say in the plan though, no matter how you would like things to happen!

I worked right up to my operation on PD I am lucky my employer have been excellent and very supportive and I repaid them by turning up to work everyday (even with 6%) kidney function.  i consider myself very lucky as I know others are not.

I did PD but also attended metafit (army fitness training) 3 times a week, even though I didn't feel like it at times I made myself go and it always made me feel better.

9-10 years wow that is a while ours is between 3-7 I was on it two years (you have to go on the list even if you have a live doner like I did) in the two years I had one false call.

If you want a more normal life PD is best but only you can make that choice, research both and make your final decision.  As long as you have not had surgery on your stomach you should be ok, but I am not medically trained so that would be up to your medical team.

I'm going back in a few weeks to see the specialist. I'll mention this when I go. Thanks again.

Hi,

I have been on Moxonidine for a few years. I was taking Losartan 100 and Bendroflumiazide and it was added.   No side effects and good control of my blood pressure has been the outcome. Hope yours gets better!

Oh, thanks so much for the reassurance, Lyn - if I do start taking Moxonidine I hope I am as successful as you.  I haven't got a very good track record with blood pressure pills, with so many intolerable side effects, including a couple of them knocking my sole kidney function for six (9 points worse on the eGFR within just a couple of weeks on one).   I must be nearing the end of the whole gamut of brands available!  Glad to hear you're doing well - keep it up!

hi helen

yes i am from singapore. 

my egfr is 20-23 at currently.

so i am not sure how long i still can drag. 

well, just to ask, how long you used to PD and how long we have to rest after the stomach operation and start the dialsysis? 

i just wish to know more and get it done and then cope well to my life and hope do not affect much for my work and life.

then i roughly know more then can plan well for my work ahead first. 

Hi,

20 is ok and hopefully it will take time to drop. I was left until I was 6% before I started dialysis. You wait two weeks for the catheter to heal on week 3 here in the uk you start PD training which is as long or as short as your are comfortable with, mine was about 3 days.  The machine was brought to my house by the unit and I received my first delivery of supplies from Baxter while I was training so it was all ready to start.  They even gave me a nice garden shed to keep the stuff in. I did dialysis for 8 hours a night minium (this depends on how well it works for you, you have tests and they check how well the dialysis is working and amend accordingly) sometimes the machine and your body doesn't play ball so it can be longer than 8 hours. If you are super clean and sterile and do exactly what you are told you should have no issues but you can get peritonitis and this can be fatal if not treated so I was always told if you don't feel right come in as they would rather test and it be ok than leave it.  When you first have the fluid in it feels a bit odd but it doesn't hurt.  i could only have 800ml of fluid and nothing left in during the day but that suited me and worked well, some people have as much as 2.5 litres I am only small though.  When they first drain the fluid out you may get something called drain pain and it feels like a stich that doesn't go if you get this it settles down mine took 3 months to go and involved much leaping out of the bed and hopping round much to hubbies amusment to start with but concern after a few days.  Depending on your bloods and if you have any swelling or fluid retention will depend if you have any fluid or food restrictions I was lucky and did well i even came off all my meds except one bp tablet.  Once you get going with it you do it automatically.  I soon got into a routine I would come home from work and set the machine up then go about the rest of my business it takes about 20 mins to set the machine up then I just worked out what time I needed to go to bed to ensure I had the time to complete the cycle then it takes about 5 mins to clean the machine down and dispose of the empty bags and they on with the day.  Hope this helps

hi helen

thanks for your sharing and it is so detailed.

i hope my nephrologist keep a close watch up to me and also start me on dialyssis if really need it. as i do not wish to have any complication or risk happened.

just to ask, currently i am drinking 2-2.5 litre of fluids per day but i do realize i pee quite a lot. also more than 2 litre. and i lose some weight. like this, will this a big matter. i have force myself to drink quite a bit now, just not sure how come i urine so much during mid night now. and i afraid it may more than my input.

also, if this symtoms do happen, is it mean i have to start dialsysis?

i do feel gas and bloated after i drink and eat. is it a symtoms of kidney failure also? thank

 

Hi yehyeh, is your urine still pale straw coloured? To be honest, I don't monitor my fluid intake but when I'm tiered I realise I've not drank enough. But I do urinate more at night, or first thing in the morning. It may just be your natural rehydration rate during the day, but I've been told there is less strain on your kidneys when you are laying down which makes it easier to work at night. I am currently 11% and still pee often.

hi weeled

yes, my urine still pale straw colour. 

thank for your reply. i have IBS, so i poo quite a lot during day time. i pee usually afternoon 2pm or later. i have to work, my work is from 730-530pm somedays. then somedays i back earlier like 2pm or 3pm. i works as school teacher. 

but i have quite a bit of kidney failure symtoms.like morning neasea, then also bloated, burping after meal and drink. muscle weak. legs weak. hand numbness. i always feel i have something stuck in my throat, not sure due to my Thyroid problem or CKD or lupus.

i do feel tired also, but i try to endure and working full time. i hope i can always keep my works and my life as per usual even i am sick or need dialysiss in future.