ckd 5

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Im 26 yo and was diagnosed with ckd at 14. After recently being up and down with my health, my most recent results came back with a creatine of 474 and gfr of 13% i was teetering at 17% for quite some time. Ive had long enough to come to terms with the illness, over 12 years now of meds regular check ups test and more meds! But its still quite daunting. Not looking for any advice per say, just maybe someone to share their stories. My family friends and fiancee are all great but itd be nice to talk talk to someone else going though it and dealing with symptoms. I feel constantly sluggish now, ive been sick all week and ive put on almost 3 stone in water retention. Thanks guys take care.

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  • Posted

    Hi,

    Our stories sound similar, I have had CKD since I was 13 and was stable for a long time.  At that age you just forget about it really as there are more important things to do.  In the last two years my GFR started to drop quite rappidly and your right even though it should be no surprise at what will happen as things progress it scares you.  I was predicted to be on dialysis next year but my kidneys had other ideas.  The transplant process was started when I had 20% GFR with the form completing and the "do you have anyone that would like to give you a kiney" questions.  Then I dropped to 9% and was asked which dialysis would I like (well neither really its not like chosing chocolate or carrot cake is it) I went for peritoneal dialysis that I do myself at home, I had a little op to have the catheter fitted this isn't to bad you cant stand up straight for a week and feel like you are dying the day after then its all good, weid having a pipe sticking out of your stomach but not bad.  Then comes the machine, you need a bit of a degree to connect  to it but the pd nurses are amazing and they even give you an idiots guide to doing it so me and my pipe get on great! when the fluid goes in it feels like you have eaten too much sunday dinner and the first and last drain thats not nice feels like one is being stabbed but all in all its really not that bad and I would rather this than heamo.  I have iron infusions and because the dialysis cleans you it takes good stuff to so I have just started EPO injections (you stab yourself) so I am hoping to be skipping by christmas.  You are right what you say its nice to have someone who actually know what it feels like to talk too, my husband and family and friends are all lovely but my issue is I look ok I have avoided swelling (exept when pregnant then it went and it was only my feet but it was nasty so I wouldn't like it all the time) and apart from looking a bit vacent due to tiredness I look fine.  Its horrible having no energy and waking up some days not feeling like you have been to sleep in the first place.  I also find that I look at a plate of food and just cant eat it, it makes me feel sick so I avoid it to the point where I am starvin then I have to eat something then I am sick.  I just don't fancy anything so on the rare occasion I say "ooh I could just eat stuffed peppers my husband has gone out the door to get it as he is pleased that I want to eat rather than cos I have to.  The next thing for me is transplant I am on the list as I still have to be but I have an amazing best friend who is a match so far and is just having final tests. I feel bad cos if anything happens to her it will be my fault as she is doing it for me, I am supposed to look after her not purposully put her in danger so that bothers me.  I have made her give up smoking though that I insisted on. So thats my next bit I know its coming but its horrible and scary.  Have you started the process yet being so low on your GFR and have you decided which dialysis you would like yet? All I would say regarding that is look into it ask to visit your haemo until and speak to actual people, look on the internet and remember if you pick one and you don't like it you can change it doesn't matter.  I would start canvasing family and friends test the water and see if anyone is willing to get tested, its just a blood test to start and I would sell it by saying just cos you have been tested doesnt mean you have to carry on the process.  I tell my friend every day that she can change her mind right up to the day when we are in the hopsital I have made sure she knows that even if she changes her mind I will still love her to bits and she will still be my friend.  Let me know how you get on or if you have any questions and I will do my best to help (I am not medical expert I can just share what I have been through so far)

    Take care

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    • Posted

      Hi,

      Interesting to hear others in a simular situation. I am 27 year old with stage 4 pkd, creatine at 230 at the mo. I was stage 3b prior to having my son and the pregnancy worsened my pkd. I don't suffer with water retention but I do have huge kidneys that are 30+ cm each which cause my the most aggro. I look and feel bloated and look pregnant, and this week my cysts have bled, I'm still in a tremendous amount of pain. Although I hope kidney failure isn't imminent, my sister is being tested to see if she is a match, and my husband too. I saw doctor last week who pulled out this graph and said looking at my trend in kidney decline I will probably be looking at the need for transplant/dialysis within the next year or so. And so I am reading about possible options for in the future..

      Rachel 

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    • Posted

      Hi Rachel,

      I had the whole graph thing put in front of me in April this year and was "predicted the complete failure thing and dialysis in 18 months" I only managed 7 months so I would start preparing yourself now, kt wont hurt.  Its still a massive shock even when you know what is coming.  The graph is only a rough guide and by no means accurate at no fault of the consultants I might add.  I would start researching your options then its not going to be a rush and you will maintain some control.  I am sorry you are in pain with your condition.  My GFR started to drop a year after my second child.  I had to be induced early with both of them as they stopped growing at 36 weeks one was 5lb and the last was 4lb I was lucky neither needed special care and both were fine thank god.  My son (4lb) was too small for his own skin bless him.  If you want to ask anything feel free if I can help I will but like I said I am no medic can just tell you personal experience.

       

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  • Posted

    Thanks for your replies guys. Even just knowing someone out there understands is a big relief. I personally decided to go down the road of dialysis to start then a deceased donor, as the cli ic is very local to me and open late, it shouldnt be too much of an inconvenience with work and stuff. Hope youre all doing well. Just as a side note, ive started a new symptom over the last week or so, and that is tremors in my hands and lower arms, especially at night which can get quite uncomfortable. I read this is due to the imbalanced chemicals in the blood, and can potentially lead to seizures as the imbalance can eventually affect cranial chemistry. Has anyone experienced this very strange sensation, and if so how to overcome it. I will be seeing the doc too soon, but wondered if you had sufdered from this too? Take care

    Terry

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    • Posted

      Hi,

      I would ask the doctor to check your blood acid level if this is wrong they can give you bicarb but you will need to keeo an eye on your BP with this.  Can I just ask why you have gone down the deceased doner route so to speak, this will be frowned upon if you can't find a live doner the reason being is you are young I would research it a bit more before you decide as a deceased doner kidney lasts for between 5 & 7 years but a living doner kidney lasts for 10-15 years I have heard of 30 years old tx patients still going.  The issue is you are only 26 and although you can have more than one transplant the issue is antibodies.  Now the science bit - we all have our own antibodies then we pick up more for various reasons as we go through life then you will have more antibodies from your doner kidney for which you will take anti rejection drugs to stop it rejecting.  For any sunsiquent tx (transplant) you will need more potent anti rejection drugs for a longer period without them being able to reduce the dose, also it will be much harder to find a match for you due to all the different antibodies.  I hope this helps a bit they will fully explain all of this to you once you get to this point but if you have some info before you go at least you have the facts and wont get pushed into something you don't want.  Let me know how you get on with your bloods and the cause of the funny feelings you have been getting.  I would also google haemo and peritoneal dialysis so you are armed with the facts about these also and remember if you pick one and dont like it you can always change.

      Take care 

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