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My story - 40 year old male - this week I visited my GP to collect what I thought was a routine series of tests. Turns out my kidney function numbers and blood pressure were through the roof. I have done a scan, and while the doctor did not want to say much about the results, he has written on my referral that I have kidney disease. Seeing the nephrologist on Tuesday.

I have been depressed and in a state of shock the past few days. I have a beautiful family including 2 young daughters who I could not bear to leave behind. It seems like the world is going on around me like usual, while mine is falling apart.

I am seeking information on the following points, it would be greatly appreciated.

a) How long have you managed to stay alive on dialysis? What things have helped you continue your life (e.g. diet). How have you avoided heart problems, which seem to stop many people.

b) Have you managed to work and maintain some kind of lifestyle while you are on dialysis?

c) How early can you get on the kidney donor register? Is it a simple process?

Any info would be greatly appreciated.

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  • Posted

    joel20393 

    Sorry to hear what you are going through.  I am also going through the same thing  (44 year old female went in due to swelling in legs had no idea why 2 months ago been to a nephrologist and had a kidney biopsy) which is shock of what and why.  Until you have a diagnosis do not go directly to dialysis because that can be many many years from now.  Or not at all depending on function of kidneys.  For example I have minimal change disease and hopefully with prednisone and meds I can go in remission for my kidneys are still functioning quite well.  Until you really know what you have you need to just stay positive.

    Good luck ahead and hope for the best.  

     

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  • Posted

    Hi Joel,

    The most important thing I can share with you at this time is that, with a transplant, this is a survivable disease.  You are very early on in the information-gathering process, so I can understand your concern.  Your nephrologist will fill you in when you go see him / her on Tuesday.  To answer your questions:

    a)  It depends on which type of dialysis you select.  There are 2 types - peritoneal dialysis ("belly fluid exchange"wink and hemodialysis ("blood filtering"wink.  How long one can survive on either type of dialysis depends on many factors - eg. age of patient; health of patient; whether there are any secondary illnesses; etc.  However, in general, my understanding is that peritoneal dialysis is good for 5 to 10 years (avg), and hemodialysis is indefinite.

    b)  Yes, you can time the dialysis treatments to try and minimize the impact to your life.

    c)  I'm not sure what country you are in, so I can only answer for Canada:  here, you go on the donor registry as of the date you start dialysis.

    In my case, I was diagnosed with IGA nephropathy when I was 29yo, managed to parlay my original kidneys for another 17 years, went on peritoneal dialysis and did that for 1.5 years, then got a kidney transplant (I have a 'rare' blood type so I got mine relatively quickly).  So take heart; as I always say, if I can survive this process, *anybody* can.

    I hope that helps.  Best wishes,

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    • Posted

      Thank you Mike, I heartfully appreciate your response. Everywhere I look is bad news so hearing a positive story like yours is fantastic.
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  • Posted

    Joel, 

    I have chronic kidney disease but rather than sharing my story with you I'd rather share my Dad's story with you🐶

    I never knew my Dad when he didn't have chronic kidney disease. (I'm 65 years old so my Dad's experiences happened several decades ago, before many of the medicines we have available to manage the symptoms associated with CKD that we have today.) 

    My Dad's CKD resulted from severe hypertension. He followed specific dietary modifications for his blood pressure. He also took blood pressure medication. He experienced very few side effects from the CKD I think based primarily on his adherence to the dietary restrictions from his nephrologist (e.g., low sodium, potassium, and phosphorus diet). My Mom cooked everything from scratch so could really control sodium and phosphorus for Dad. Dad also worked full time until he was 60 years of age when he began hemodialysis. (PD dialysis was not an option at that time, i.e., nearly 30 years ago.)

    With Mom, Dad raised three children. He put us all through college. He welcomed grandchildren into our family. He had a great sense of humor. He also taught my siblings and me how to live well with a chronic illness.

    I would not trade him for a father without CKD. He was a major role model for me and the most significant influence in my life.

    So, can you have a life on dialysis? Absolutely--and My Dad would say it will be as good a life as you choose to make it.

    Can you live long enough to raise your children? Absolutely🐶 In fact, with the newer medications, improvements in dialysis as well as the possibility of a transplant, I would think that you can live much longer than my Dad did.

    Can you continue to work and provide for your family? Absolutely!!

    Of course, no one wants to have chronic kidney disease. But the important think to not is that your nephrologist will get a treatment plan in place for you. You and your family will make any changes needed for you to live well with chronic kidney disease. And finally, it's quite possible that an effective treatment plan will either halt or slow the progression of your CKD. You may not progress to the point where you need dialysus.

    Marj

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    • Posted

      Thank you so much Marj. You have no idea how much reading stories like yours mean to me at this time.
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  • Posted

     Joel,

    It is really scary when you first find that you have kidney disease so I understand your concern. However, often kidney disease progresses very slowly and you can have it for many years without it much affecting your quality of life.  The first thing to do is to get your blood pressure under control.  This will prevent further damage and might well improve your kidney function. You don't say what your GFR is so it is difficult to know what stage you are at.  My GFR is around 20% now and having kidney disease for 20 odd years did not markedly alter my quality of life  until recently, when I became anaemic (common in CKD as your kidneys don't make enough of the protein that stimulates your bone marrow to make red blood cells). I am now treated with EPO weekly and intravenous iron every few months and feel much better again.  You may never have to face dialysis. Keep us up to date with how it goes and good luck.

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  • Posted

    The first thing to know is that ckd (chronic kidney disease) is NOT the same as kidney failure. Once ckd progresses to the point of kidney failure one has symptoms and needs dialysis to function. It's possible that your gp saw an abnormal GFR and has done the responsible thing which is to refer you to a nephrologist for  a further look. I was referred to see a nephrologist three times over a period of 10 years, but my GFR had not changed significantly. This year( I am 63 and GFR is 38 or so) I decided I want to be monitored regularly by a nephrologist, so I see him every 6 months. I hope that the best thing I have done for my kidneys is to lower my blood pressure to normal with diet, in particular sodium intake of 1500mg daily or less AND avoid medication that is harmful to kidneys (that's probably how I got ckd in the first place). I still have a good quality of life despite having ckd as I am asymptomatic. Guess what? - I am currently on a medication that is harmful to kidneys (I  have ulcerative colitis)! I hope to reduce the dosage soon. I hope that you are feeling better about all of this after you see the nephrologist and get the benefit of his or her expertise. 

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  • Posted

    Hi,

    I know you have had a shock but slow down there. You have been diagnosed with kidney disease but that may well be a long way from dialysis and transplant, if you have been googling then stop as you are scaring yourself daft by the sounds of things.

    You don't mention what your figures are? What is the cause of these results? If it is down to high blood pressure then this can be controlled and slow or stop the progress of your kidney disease.

    I have gone through the whole process as I have Alports, you may not ever reach the later stages but I hope this puts your mind at rest.  I was diagnosed at 13 I was 37 before I had to go on dialysis, I too have two children and I managed them, a full time job, running a business and exercise for two years.  Last year I had a transplant and I am fine and have been through the whole process.

    There is no point going on to the later stages with you until you know this will be required and the chances are it won't.  You have heard kidney disease and like many people are assuming its the end of life as you know it.  It doesn't have to be that way at all.  Many people tell you when you have children that your life won't be the same again and it isn't but you deal with the change right.

    Wait until you have seen your neph and take things step by step, you need to be aware that you may not have all the answers after that appointment.  Hope this helps.

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    • Posted

      Thank you helen. My numbers are pretty bad. Id prefer not to post them. I'm changing my diet and taking medicines etc to do everything i can. I appreciate your support and positivity.

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    • Posted

      Hi,

      That's ok please don't feel the need to post information that is personal to you, there really is no need.  Like I said see what the neph says.  You mention you have changed your diet, just be careful with this as if you reduce certain things without being told to do so you can cause more harm than good.  When you see your neph ask if you can be referred to a dietitian as they can provide a safe diet for you to follow as and when certain blood results dictate.  I had to follow a low potassium diet as there was concerns for my levels mine was 7 which is dangerous (safe it between 3-5) and towards the end I had to follow a low potassium diet and take binders.  The point is if you lower either of these two things and your bloods are fine you risk making them too low which is just as dangerous as them being too high so just be careful.  You may feel tired so ask what your iron and red blood levels are as these can be dealt with and that will make you feel a little better.

      Depending on what your neph says it may be worth looking into the different types of dialysis so when the time comes you can make an informed choice that fits in with your life.  I had peritoneal dialysis which I did myself at home at night when there was nothing else to do.  I spoke with my kids and included them in everything I had to explain it in different ways as they are different in age, I found the little one dealt with it really well and sat with me and asked questions while I set up the machine and even when I was on it.  The older one was a different matter as she understood more and she wouldn't have anything to do with the process, I didn't force the issue just let her know that she could come to me whenever. Its hard for us but it is no walk in the park for our loved ones.  If you need to ask anything or you just need reassurance then ask away, there are loads of nice people on here that would be happy to share and just support you.  Good luck with your appointment and if you feel comfortable in sharing what you have learnt then I for one would love to here how you get on smile 

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