Stage 3 CKD - Depressed- :(

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My sister has been diagnosed with stage 3 CKD due to alport syndrome . Her gfr is 37. My question is, with medication and diet can we prevent her going on to stage 4. She is only 21.

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  • Posted

    Hi,

    I have Alports and the answer to your question is no sorry.  She will need to keep her blood pressure under control and avoid processed foods, salt, low salt and ibuprofen based meds.  She should not change her diet unless she is told to so by her drs and sadly there is no magic potion or drinks of various plants mixed together that can be taken to stop this.  Alports people are not meant to live past the age of 10 so all good there.  I managed to last until I was 37 before I prgressed and needed dialysis and I had my transplant last September.  My advice to her would be live her life as normal but get all of your heads in the place that transplant will be required one day.  Her family members may wish to consider donating a kidney to her (I had mine from my friend) they will not consider starting the tests for this process until she has a GFR of at least 19% but you can all have a long hard think if there is anyone who would be willing to give her that wonderful gift. It is a fear of the unknown for many, but it is not as scary as it seems I have been through the lot.  Hope this helps a bit.

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    • Posted

      Thank you helen. I understand transplant would needed. However, would medecines make the progression slow? So she has transplant at over 30 somehing ?
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    • Posted

      There is no set time i'm afraid that is a question that no one has the answer to. I stayed at stage 3 for years and once I reached stage 4 (this was due to colds and infections) I was told it would be 18 months before I needed dialysis but I just about lasted 7 months so you see even the drs cannot even predict it.  When I was in hospital after having my transplant there was a girl who also had alports she was 24 so you see no one can tell that.

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    • Posted

      it all depends on the transplant a person has, ie deceased or live doner. Deceased last less than live they say approx 5-7 years for deceased doner and between 10-15 years for live doner however this is just a guess from the drs people have had transplants for 25 years or more.  You can have more than one transplant the process just starts again.  Take me for example there is a fare chance I will need a further transplant due to my age.  You have to remember that science comes on an awful lot in time, they have made a kidney using a 3d printer and a persons actual DNA in America they are in the process of human trials.  The fact they are trying to make it with a persons own DNA is a good thing as the body won't see it as foreign and try and reject it.  I am hoping by the time I need another this will be available and I won't have to take the horrid but necessary anti rejection meds.  Its not an automatic death sentence not these days.  It is true that transplant is a treatment not a cure but there is no reason not to live a normal life.  I get why you are scared for your sister I really do it is all new and you don't understand as yet.  I was fine on dialysis and now 9 months post transplant after a rocky start all is good (fingers crossed).  The fear of the un known is the scary part as you don't know what to expect. All is not as bad as you think though. 

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    • Posted

      I just want her to have a normal life; get married,have kids etc. I hope she does not progress to stage 4 for a long time like in 10-15 years. I cant imagine loosing my sister.
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    • Posted

      That is understandable, just for info my kidney function dropped each time I had a child and never recovered.  The neph may frown upon the whole children thing but the decision will awlays be your sisters. I have had a normal life even while I was on dialysis (I did it myself at night at home) I have a husband, two children, work full time have always done this and run a business so you can't get more normal than that.  This Alports can only change your life if you choose for it to, otherwise there is no reason you don't carry on.  Yes you have lots of appointments later on but life is still very much liveable.  Try not to worry smile your sister will need you.

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    • Posted

      One last question. How long did it take you to go from stage 3 to stage 4. Thank You for your support <3

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    • Posted

      Hi,

      When it happened to me it happened really quickly unfortunately I even surprised the drs! I don't like to be the same, this is coming from someone who has the opposite reaction to any meds than one is supposed to.  Please don't let this worry you, you asked a question about me so I owe it to you to be truthful about MY circumstances, but please remember we are all different.  I just like to be a bit more different than most smile.  If you have questions please ask I really son't mind, I don't clim to be a medical professional or know everything but I have been through a lot and if sharing my personal experience helps someone else then that will make me happy so don't ever be alone.  There are lots of lovely people on here all at different stages who have had different experiences all who will be happy to share and support you, so you will never have to be alone.

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    • Posted

      Thank you helen for your support. I try not to cry in front of her,but sometimes it is too difficult. In my previous question, I meant, as you said you were on stage 3 for years. How many years ?
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    • Posted

      Hi,

      I can't remember exactly you have memory issues when you have kidney failure part of the thing, by the end I couldn't remember what someone had said to me 3 seconds ago.  ALl fine now though.  Probably 20 years but like I said we are all different.

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    • Posted

      Yep was first seen when I was 13 and not properly diagnosed until 37.  I find I have had to laugh at myself a lot rather than feel sorry for myself, plus I have a husband and two children to consider and didn't want to frighten them.  The younger one was ok and accepted my dialysis as he didn't understand so didn't know how serious things were.  The older one however was different as she knew exactly what the score was and wouldn't enterain talking about it never mind coming in our room and seeing the dialysis machine. Very hard for her so I had to make sure she thought it was all ok, she wanted to give me a kidney but was too young, she did all sorts of research and backed up her argument with this.  The anti rejection meds make some peoples hair fall out, and she said to me "Mum if your hair all falls out, I will shave my head" so you see I have such wonderful family and friends in the grand scheme of things I have nothing to be miserable about.  Keep smiling she will need you to smile

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    • Posted

      You are really an inspiration. I wish I could be strong as you. I have been told that lisinopril-the medication,can help to increase kidney function. I am hopeing that it increases my sisters'.

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