Soletry kidney, stage 4 , pre diabetic

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Hi , my husband has just been diagnosed stage 4. Also only has the 1 kidney. We have known he has kidney disease for 2 years . His been told his also pre diabetic . We have 5 young children and I'm worried for what the future holds . His 37 years old

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  • Posted

    Hi,

    It must be a very scary time for you all at the moment. Firstly try not to worry as there are treatments such as dialysis and transplant both of which I have had and it is not as scary as its sounds once you get your head round it.  I am about the same age also, my kidney failure was due to a genetic condition called Alports.  When you say he is pre diabetic why is this, is he over weight or does he eat a poor diet.  This information will help, obviously if he is overweight he can help himself by looking to rectify this the same with poor diet.  If you can provide some more info that would help but he won't be going anywhere anytime soon.

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    • Posted

      Hi Helen thank you for your reply. They have said he is pre diabetic because of the kidney disease .. weather he weighs 10 stone or 20 his still guaranteed to have it sooner or later ! His over weight yes and in denial I can only do so much for him 😕.. it's all confusing as both the pre diabetic and stage 4 state different diet totally . His likely to be on dialysis within the next 2 years

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    • Posted

      Hi,

      Thank you for the further information.  I was confused by the diebities being caused by the kidney disease as it is not always the case that everyone with CKD is at risk of becoming diabetic.  You will more than likely find it is due to his weight and lifestyle in which case he can avoid becoming diabetic at all.  I understand that there is only so much you can do and it must be very frustrating for you especially as you have children to think about.  You are right it is up to him but if he has diabeties to manage as well as CKD it is all the more difficult.  Regarding diet unless blood results show high potassium or phosphate there should be no change in diet for the CKD.  If these levels are high then there diet is amended however this should only be done under a dieticians advice as it can be dangerous to have potassium that is too low and it has the same outcome as if it is too high.  Have they said if he is pre type one or two diabetic? Type two can be reversed with a healthy diet.  I would avoid salt all together and low salt is a no no more so, don't let him take ibuprofen or any other anti inflamitories the kidneys dont like them.  Please take the 2 year dialysis projection as a guide as this is what I was told at stage 4 and I managed 7 months!  He must also keep his blood pressure under strict control as kidneys don't like high bp and this will speed up the decline in kidney function.  Even if you know your whole life that you will at some point be on dialysis when it is time it is still a shock, try and bare with him I know how awkward husbands can be but he will need you more than ever to get through this.  I would at this stage try and get to to research the two types of dialysis and start thinking about which type he may wish to try.  If he picks one that doesn't suit he can always change.  They will talk about working him up for the doner list once his kidney function gets to about 15% they will also start talking about dialysis at this point but don't worry if he doesn't start then as they see how inderviduals feel I was 7% when I started and I have known people who only find out there is a problem at 5%. Keep us posted on his progress and if you have any questions ask away there are lots of nice people on here and while we are not doctors we have been through it smile

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    • Posted

      Hi Helen could you please share your experience of life after getting transplant done.

      I'm 40 with controlled high blood pressure my gfr is around 20 nephorologist is going to refer me to renal replacement therapy.im worried any word of advice ?

      Thanks

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    • Posted

      Hi,

      It is ok to worry first of all as it is the unknown, I knew from when I was 13 that at some point I would need dialysis and even though I knew when it was time it was still a shock so what you are feeling is normal.  In November 2014 my kidney function deteriorated and it did so quickly so much so it even surprised the neph's.  I researched the two options haemo and peritoneal dialysis and decided PD was the best for me and my family, I am a little bit younger than you (not by much) PD gave me the freedom to still go to work, exersice and look after my family and I was lucky enough not to have any restrictions.  You have to do what is best for you I can't really tell you too much about haemo only that it wasn't for me.  To have PD you have a small operation to have the pipe (tenckhoff catheter to give it, it correct name) mine was done under general then it heals for two weeks I was about 7% GFR when it was put in if they need to do dialysis in an emergency they can so don't worry about that.  Once it was healed I had a weeks training (you can have longer if you want) and the nurses are on call 24/7 so you are never alone.  Then you do the treatment in your own home, I did it for 8 hours a night I struggled with the fluid that is put in your stomach cavity as I am only little so I told them and they adjusted my levels and it was much better. So for PD you have fluid put in your stomach by a machine this is called the fill, then it stays in there for a bit this is called the dwell the after the set period of time (we are all different) you have the drain.  To start with until you get used to it it can pull a bit feels like a really bad stitch that doesn't go away but as you get used to it that goes.  You have a delivery each month and I got a free garden shed as my house is full of people and their toys lol.  Depending if you have fluid retention will depend if you have fluid restrictions but I was lucky.  You need to be really clean and set up and take down the machine exactly as you are told and wash your hands like there is no tomorrow as you can get peritonitis which can be fatal, i did as I was told and never had it at all in the whole 2 years I did dialysis.  Digest this info first and research haemo then you can ask some questions if you have any.  I will go onto transplant with you at a later date lets get you in the right frame of mind for your first challenge then we can take it from there.  With you being at 20% they may start taking to you about going on the doner list, this will invove a work up.  You have blood tests lots of blood tests but you will be used to this right smile you will have an ECG, a heart scan, a chest x ray and lung tests this involves going on an exercise bike with a mask on your face (mine was in August and it was boiling hot and the bloke was trying to talk to me I had to tell him to shut up nicely).  They may also ask you if you have anyone that would consider being a live doner so a friend or family member that would consider giving you a kidney.  A lot of people I work with came forward to be tested and I was humbled if I am honest I don't really do emotional but that floored me as there were so many people who clearly cared for me.  My transplant came from my best friend in the end one brave lady and bigger balls than any man I know.  Like I said I will tell you about the actual transplant after this hurdle however I will tell you I feel much better and I can certainly feel the difference despite the challenges.  Keep me posted on your progress and if I can offer morak support I will.  I made two friends in hospital when I had my transplant and it is really good as I know they really understand as they have been through it too smile

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