Living with a chronic disease

When my mother died suddenly at age 57 no one at the time said anything about her kidneys. I doubt

When my mother died suddenly at age 57 no one at the time said anything about her kidneys. I doubt if any of her doctors even knew she had a chronic kidney condition. We all knew 57 was a very young age to die.

My father in the emotion of the moment allowed the doctor to say she died from a heart attack.

In hindsight that was the wrong thing but at the time my father was so flummoxed by her sudden death he agreed to anything just so he could move on.

Over the years I have been diagnosed with a chronic kidney condition. After several biopsies and then a distressing series of drug tests to determine if my condition was genetic or viral, it turned out genetic.

I questioned my father about my mother’s health in the days prior to her death. From what he told me she displayed the symptoms of end stage kidney disease.

I should point out that my father died aged 90 with very good kidney function.

So it has brought about a lifestyle change. Not only do I try and stick to a low sodium diet but part of my treatment is a drug, which elevates my potassium levels. In effect I feel I live on a no food diet.

Everything you eat has salt in it and potassium in varying levels.

It is easy to become fatalistic when you are told you have a chronic condition, which at this stage is not curable. I determined however that I had a lot to live for.

My six children are amazing people; there are grandchildren, each of whom is growing into their own personality. I also have things I want to do, places to go and wonderful people to meet.

My children are all aware of my condition and aware that they need to pay attention to any signs of blood in their urine.

Awareness and the ability to manage it are all paramount in dealing with a condition that you can live with comfortably.

My goal along with my Nephrologist’s assistance is to save my kidneys and keep me away from dialysis. My issue is a protein leak, which is being treated with a combination of drugs and diet.

So far I am doing OK, my kidney function is below 50 per cent but like so many with kidney issues you often have no idea your kidneys are dodgy. Like my mother, if no one tells you then one day your keel over and that’s the end of you.

I have been lucky to be aware of my condition for the past 20 years and therefore I have been able to put in place management strategies.

I lead a normal life; if I didn’t tell you then you would never know there is anything wrong with me, well providing you didn’t look too close.

So along with all the normal things that go wrong as we age, slowing down, bits wearing out, not working as virulently as they once did, life is good, for I know it could be a lot worse.

If you know you have a kidney issue get it sorted out so you can manage it and lead a full and meaningful life.

Tell us, do you suffer from a chronic condition or know someone who does?

    • It sucks doesn’t it, though knowing is a whole lot better than something happening and we can’t do anything about it…..I hope you can stay on top of your issues….

  1. I have had asthma since the age of 3. I was so ill as a child I nearly died several times as time went on medications improved. In November of this year I started getting chest infections which are still recurring. It has been so difficult as I think I am getting over the chest infection then it returns after finishing another lot of antibiotics. On am on a nebuliser hoping to avoid another stay in hospital

    • My father developed severe asthma in his 50’s. His doctor suspected that as he was an extremely fit man he may have had a sub clinical asthma for years but was able to function because of his fitness. On some occasions he ended up in ICU on a ventilator. Now as an elderly man like you he suffers from chest infections which develop into pneumonia.

    • Thanks Michelle I wish you well, it can certainly be disconcerting when an issue reoccurs but we have to keep doing what we can to maintain our way of life. Best wishes Michael.

    • I have a strong belief in God he lifts me and helps me to think of all my many blessings in my life. I go to an amazing church where people are are loved and cared for. I have 3 lovely daughters, I live with the youngest and 3 grandsons. She is doing all the housework as I am so unwell. Thank you for your kind words ❤️

  2. I certainly admire your attitude, Michael. I’m sure if I had a chronic illness–that is, more that the typical everything-wearing-down-and-out that comes with aging, I’d probably take on the fatalistic approach. That comes from having my parents and grandparents and most of my older relatives dying in their 50’s. Not having much family medical history to go on, I sometimes forget that times have changed and medical treatment has advanced a lot! It’s a good thing you were able to find out what your mother’s real diagnosis was so you could realize the importance of doing what you have to to ward off that dialysis machine. Your discipline and fantastic attitude will help you live to a ripe old age. (I’ve never quite understood why they expression is used to portray a good thing, lol.) Thanks for sharing your story!

    • Thanks Mandy I appreciate your supportive comments. Life offers so many possibilities and its easy to say they are not for me because I’m impaired in some way…..Kidney disease doesn’t show up with in your face symptoms its more your insidious disease that creeps up on you, a bit like it did to my mother. Yes I am lucky in so many ways to be aware, to be doing what I can, to have love and support around me and an adventurous spirit…..

    • It certainly is Nita…..I’m sure you deal with it as best you can…….

    • Best wishes Barbara, I’ve been for my blood test this morning see how potassium and sodium levels are today….

  3. Phylor  

    My husband’s family has hereditary kidney disease. So, Michael, I understand some of what you face. Different kidney disease, but a killer none the less. My husband is one of the few the disease skipped (now we know it can), but his brother died in January of complications linked back to the kidney (a transplanted one 15 years previously). Until we were sure he was “okay,” it was always at the back of my mind.
    My own fatalistic view: my mother died with dementia, her older and only sibling, died of Alzheimer’s. If I could afford the genetic test, I would take it. I have cognitive issues already, and will worry that each forgetting is the beginning. And, I don’t want to be around for the end.
    This is an excellent essay, and should get folks thinking and discussing chronic illness. You have taken the absolute perfect attitude, and although food is off your diet, you seem to enjoy life with a fantastic sense of humour and a belief in hope, promise and love. These are the keys to living with a chronic illness. Emphasis on living.

    • Thanks for your comment and support, I hope it does generate some comment and for people to feel life can go on in the face of chronic illness…..I have been lucky in knowing about my condition for so long……it doesn’t bother me except when I eat and I think about salt and potassium levels.
      Your husband is lucky I think my brothers have been spared too, my mother generously passing on that gene to me…..
      But as I said life is about living and I choose that.

  4. It is very frustrating Michael and I understand. I have been living with Lupus for 40 years and when the doctor told me what I had back then was devasted because he told me I would be in a wheelchair by the time I was 35 (was 25 at that time) if I lived that long. Well I had three young children and was determined to see them grow up so here I am today still living with this chronic and potentially fatal condition. Have had some pretty scary times and is very restrictive (have to stay out of the sun as much as I can among a number of other restrictions) but till here. Now I’m a carer for my husband who has a brain tumor so life is very demanding. Stay strong Michael and good luck.

    • Thank you Gloria and good luck to you….I am always surprised by how resilient the human body is….I also love it when a dr tells you one thing and you prove him wrong…good for you….I sometimes think I am too busy to be sick..

    • Thanks Nina. Hope your friend is ok. Lots of different symptoms with Lupus and not many people understand.

  5. Yes.Before I lost my Mother,while in Hospital, they show us a film on what they could do for her,can’t remember what,but they sent her home,me lovingly stayed to get her better.the next time she went to hospital,I got there in time to see her die,still haven’t accepted it,it was 21 years last October.I always say ” you are never too old to still want your Mum.

    • yes indeed, my mum died 32 years ago and I still miss her, but I feel sad thinking about what she missed out on like grandkids and family…..

    • Yes Margaret that is about all you can do, your best with what you have. Best wishes.

  6. I was born with 2 tubes connecting my right kidney to my bladder. Most people have only 1 tube. This is no problem as long as both tubes work correctly. Apparently in these tubes there is a valve that seals off so that urine does not flow back into the kidney. Both my tubes were working fine and the doctors were puzzled. After much pain and many tests (this was 37 years ago) they found that when I stood up my right kidney was falling and resting on top of my bladder. Hence pain. I had surgery that stitched my kidney onto a strong muscle in my back. It was extremely painful surgery and no such thing as key hole surgery in those days. I have a huge scar on my right side but apart from that I have been fine. I have to be careful and to a certain extent protect that muscle but apart from that all good. I have no idea how they would fix my problem these days.

    • Thanks Debbie, wow, aren’t we all different…so glad for you they fixed your issue… days they would I am sure key hole the op with tiny robots doing all the work…..

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