Ged

[Ged9251]

Hi my name is Ged I am currently at CKD 4 gfr 23. I am receiving regular blood tests as the gfr is up and down...it was stable over the last few months in the high 30s. I have no symptoms, am 66 male, reasonably fit...walk 2 big dogs for 2 hours daily, train karate twice a week...I am frightened!!

[jaykay777]

Ged -- I think we were all frightened when we learned the diagnosis. Like you, I'm over 65, which -- at least here in the U.S. -- is considered by some doctors to be an age past which transplants are not an option because they prefer to give kidneys to people with a longer life expectancy. I read that one U.S. study found that dialysis is not helpful to people over 65. I am 86 and was diagnosed two years ago. I am under the care of a nephrologist who orders regular lab tests and tells me the results. I also consulted a renal nutritionist and recommend that or reading book on diets for kidney disease. So far my condition is stable. Keep up your dog walking and karate training. Are you in the U.S. or U.K. or elsewhere?

[jillab]

Hi Ged, I'm also stage 4 Egfr. 28 but has been down to 23, It is scary when you first find out, by the way I'm female aged 74, I had no idea until just over 4 years ago, that anything was wrong with my kidneys, I have been told for more years than I can remember that I had I.B.S. and was on pills for that, eventually 10 years ago we moved to Somerset (England, I don't know where you are). and that meant changing Dr.s well they just carried on with the notes from previous Drs. eventually after a lot of pain I said I felt things were different and the Drs.words of ` I'll prove to you it's IBS and send you for a colonoscopy (dreadful tests) anyway to cut a very long story a little shorter it didn't do that, I landed up with needing my left kidney removed urgently and being told the right one was only working at less than 25%. It was all a heck of a shock but I'm still here, and determined I will be for a lot longer yet. You are doing very well if you have no symptoms yet and it's great you are exercising etc. keep it going, my worst thing is getting tired quickly, but I keep going and push through it and the feeling goes off. Mind you I am lucky hubby won't let me overdo it. Best of luck to you and I hope you keep stable.

[Melirm]

Hi Ged, hope your feeling ok. I am a 44 year old lady with CKD stage 5. I completely understand why your frightened. I know I was. I have other medical conditions (lupus) that caused kidney problems and so was seeing a rheumatologist and renal dr at a combined clinic. They always said I had some damage to my kidneys but it was stable and not to worry. Then after a few weeks of chronic tummy problems I was admitted to hospital and was asked by the various consultants about my kidneys. When I have my next clinic appointment I asked what was actually wrong with my kidneys and the renal dr did a lot of looking up results and then put in a grave face and said we need to have a serious conversation and started talking long term plans and potential dialysis/transplant. Shock and horror. .... I am currently waiting to go on the transplant list and have a gfr of 13. What got me through is having some amazing friends to talk to. When I say talk I mean message to. I found it really hard to say the words but easier to write them and I have two amazing friends that I can share my thoughts with, complain to on bad days and know that I don't have to talk to them about it. We all find our own way of coping and you will find yours. It's really not as scary as it first seems once you understand what is happening. Although I still have a long way to go I have come to terms with it.

Good luck and remember your not alone in this. Take good care of yourself. X

[Bunkin in reply to Melirm]

I am in the same boat as you at GFR 13! I go between being positive and crying all day. Hoping eventually that will pass. I too am trying to get on list although without a living donor I will never get a kidney until I go on dialysis. My doctor just told me that yesterday. Then the wait can be over 6 years if it ever comes. Trying to just live in the present and be grateful I feel as good as I do. Prayers for all. God can do anything!

[Melirm in reply to Bunkin]

Hi Bunkin, I know what you mean about trying to be positive and crying!! I spent an entire consultant appointment crying about how I can't stop crying! My dr's have said that I should be able to go on the registers, but I have a high number of antibodies so a match is unlikely. My wonderful brother was tested as my living donor but unfortunately is not a match, but is going on the swap register with me (fingers crossed surgeon appointment next month for final OK).

My mum was a great believer in fate and always said things happen for a reason, sometimes it just takes a while for us to work out what for. Good luck to you. Xx

[Bunkin in reply to Melirm]

Yeah my doctor told me yesterday that since I'm not on dialysis, the chance for me to get a kidney is about zero unless I can find a living donor, which I can't even find someone to be tested much less a match, so I just try to concentrate on making the most of the time I have left. Still sometimes it just gets to you, doesn't it. Will keep you in my prayers, hope you do the same😀

[LaureenD in reply to Bunkin]

I will keep you in my prayers too Bunkin...

[Nicolala]

Hi Ged

I understand your fears. Being reasonably fit will help stand you in good stead for whatever may come. I'm 46 and been on dialysis for 26 years. I work and walk my big dog daily. Just wanted you to know that the future, whatever it may hold, can be a positive one. Take care.

[Melirm in reply to Nicolala]

Nicolala, how do you cope with dialysis and every day life? I still work full time (office work) but I am struggling. I'm determined to stay at work for as long as I can and save some money for when I really need time off, but I fear those days are coming sooner then I thought. I guess I just need to know it's possible to carry on to help me through my down days.

[Nicolala in reply to Melirm]

Hi melirm

I'd be lying if I said it was always easy. I work in school so at least get decent holidays to recharge my batteries. I dialyse overnight which helps.

I too am determined to work for as long as possible. Mostly for financial reasons, but working makes me feel 'normal'. In my head I'm not a kidney patient when I'm working.

I do sometimes wonder when I'll have to slow down- I'm suffering from a few symptoms of long term dialysis now. For me-life is all about being myself, doing things I enjoy with those I love and being positive. I do need to just rest and do nothing sometimes. More often than not lately. It's not a crime.

So just take it steady and don't be hard on yourself. We dialyse so we can have a life. It's that simple really. Being tired is better than being dead! And yes you can carry on. Live day to day and enjoy the little things. X

[Bunkin in reply to Nicolala]

You are an inspiration!

[Nicolala in reply to Bunkin]

If you meant that comment for me, I'm really not. I've been lucky. I'm not diabetic and until fairly recently, didn't have any other serious health concerns. I had a son on dialysis, he gave me a reason to keep going. I have good friends and family around me. As each year ticks by, I'm glad I'm still here. I want to make a difference to the kids I work with. I want to see my son and nieces grow into adults. That's it really. That's my motivation. X

[Bunkin in reply to Nicolala]

I don't have other issues either, other than bp, so I guess that's how I've managed. It's good to hear others stories as it motivates me to try a little harder😀

[Nicolala in reply to Bunkin]

I just read your posts. When are you due to start dialysis?

[toeragthecat21]

HI GED DONT WORRY..IV RECENTELY HAD A KIDNEY TRANSPLANT AFTER 52 YEARS OF PROBLEMS...THE GFR OF 30 PERCENT LASTED ME TEN OR MORE YEARS..KEEP POSITIVE ..EAT WELL ..LOW FAT FOOD TO HELP KIDNEYS..DRINK WATER!...not tea or coffee ..ALL THE BEST TAKE CARE CHRIS

[momof_four]

I am sorry to hear that. This is extremely scary stuff. Like you said there are no real symptoms so I never know if I am worse or better. Every time my doctor orders labs I am holding my breath to get the results. What drugs Are you on and do they know what you have, why you got sick? Thanks for writing.