Struggle with daily life

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Hi i am 41 and have CKD ranging from 27-31%.  I have always been told that you can not have symtoms at these stages and it drives me crazy. i feel so tired, short of breath, little water rention and i have to keep my moods under control.  i am married, have a full time job, have an 9 year old son and i find it hard to keep ontop of eveything.

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  • Posted

    Hi Rita, I'm sorry to hear you are having a difficult time with your symptoms.  I can offer a direct parallel to you, as I too was at 27 - 31% back when I was 41yo but in my case, I experienced very few symptoms.  I started to get progressively worse leg cramps at night and noticed a bit of water retention, but other than that, not much - at least, not much that was noticeable day-to-day.  Symptoms only really arrived in force when GFR hit the low teens.  I should also note that I haven't noticed anything affecting my 'mood' so I'm not sure that is related to your CKD?

    That said, I have read other accounts from people who felt symptoms much more profoundly at the 30% level, so I think the answer is, "it depends".  Some people complain of flank discomfort; others (like me) had none.  Some people complain of cognitive difficulties eg. memory ain't what it used to be (yeah, that's me); others seem to be okay with it.  We are all different.

    Do you have any secondary medical conditions?

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  • Posted

    Rita, I'm sorry to hear that you are struggling with the side effects you are experiencing whilst being at eGFR 27-31%, at the considerably young age of 41.  I am at 38% at present (have only one kidney), but have few symptoms other than some night cramps from time to time which I do not assume are related, suspecting that they are more connected to perhaps having some slight magnesium deficiency.  Just recently, I am also being plagued by a UTI which is being very stubborn with changing bacteriums and refusing to go away.  I don't know whether this is eGFR-related but I have an appointment for an ultrasound scan of my kidney and bladder in a2-3 weeks time. I am much older than you and long retired and although I do get a little tired from time to time, even so I have a very busy life-style, including running a very active local support group under a national charity for members with a long term autoimmune condition.

    I'm not a medic, but I would hazard a guess that you are perhaps experiencing some of your symptoms purely from the stresses of running a family whilst at the same time working full time.  Although many of us do that, it can prove tiring for anyone in full health let alone someone with reduced kidney function.  Have you noticed any improvement when you are on holiday for instance?  Perhaps a little time signed off work for a while might help whilst you are feeling so low?

    Have you had a full range of blood tests to ensure that you are not deficient in any particular area.  A deficiency in Vit D, for instance, can lead to all sorts of symptoms including tiredness, aches/ pains, low mood/low immunity etc.  Likewise, with abnormal thyroid function.  Then there is Vit B12 to consider, magnesium levels etc.  If you haven't had all these tested, then do ask for the relevant blood tests.  On one occasion, I got particularly lethargic, finding it hard to put one foot in front of the other - that turned out to be from sudden, reduced sodium levels caused by a new blood pressure pill.

    As far as the water retention is concerned, do try and avoid salt in your diet (it's hidden in loads of pre-packed and processed foods).  Drink plenty of water and add known diuretic-type foods such as asparagus, garlic, fennel, melon and celery to your diet.  Certainly if water retention becomes severe that can be behind shortness of breath that you describe.  

    I do hope something in the above might help but, as Mike has already mentioned, we can all be a little different in our presenting symptoms, and this can be at any given stage of CKD, particularly when either at Stage 3 and heading towards Stage 4, and also in our response to any treatment.  Good luck, and I hope you can find an answer in the blood tests I have mentioned above.      

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  • Posted

    Thank Mike and Mrs O for your replys.

    I too only have 1 kidney too Mike.

    I have other medical issues too, had a heart operation at the age of 5, went through joint pains from my teens to present.  When i got married we found out i only had 1 kidney which is in the pelvic area and that i could not carry a baby, we went through surrogacy and 10 years later through a private clinic my miracle baby came along.

    I changed my diet along time ago and being Gluten Free does not help either.  My symtoms only got worse over the last 2-3 years, this year has been the worst.  My Renal doctor has taken me off the blood pressure tablets as i was getting headaches for 5-6 weeks on a daily basis, but i am still continuing with the Vitamin D and acid tablets.  As soon as i came off the blood pressure tablets my headaches went within 2-3 days and i feel much more alive.  I can help more with house work, altough my Husband is a God send, he has helped alot.  My blood pressure is creeping up 132-152, not sure when to let the doctor know as he said if it gets too high or too low to call him.  i still have flank pain, water rention and cramps too.

    But overall i try to keep myself busy and not dwell on my health (sometimes it hits me when i least expect it).

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  • Posted

    Hi Rita,

    Have you had your Haemoglobin checked recently? It should be between 10 and 12.. People with CKD often get anaemia because the kidneys make a protein that stimulates your bone marrow to make red blood cells.  As GRF declines, Hb often drops until you are anaemic.  This makes you feel tired and lacking in energy as red blood cells carry oxygen to your vital organs.  Sometimes taking oral iron can fix it for a while but  many people eventuallyhave a problem absorbing iron.  Both problems can be fixed. You can inject artifical protein (called EPO) and also have intravenous iron.  So... get your HB and Ferritin (iron store) checked and also your Transferrin saturation which tells you how much of the iron available to your body is being absorbed.  Good luck!

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