My Healthy Days
Our kidneys are very important but having a full functioning kidney was never an issue that crossed my mind. It was the traumatic experience that brought me to my heels and my senses. People knew me as a vibrant person; everybody knew that a party was never complete without my friends and I present. It wasn’t that we were rowdy or disruptive but I think we just brought a different sophisticated pizzazz to the party.
However, when I became unwell, it was as if a light went out. Despite my efforts to make sure that things remained normal, it was never the same again. Recently, my friends told me at another friend’s party, that they couldn’t tell me at the time. Usually, during my illness, I was the first out of a party because I had to get home to get on my machine. Sometimes, I even turned down invitations to a party because I had to go on the dialysis machine. It was a lonely life.
However, I created my fun whilst on dialysis.
You see, there is a saying that states, “people never appreciate what they have until they lose it”. This is true of my situation. I never realised that my kidneys were important; their function in the body was key to my continued existence on mother earth.
Steady Kidney Deterioration
When I had the traumatic episodes after my miscarriage in the hospital, there were lots of thoughts running through my head. I thought about my sisters first. You see, my kids were already taken care of because I knew that their father would look after them and never allow them lack for anything. He loved and still loves his children very much and would do anything for them. However, my sisters especially my younger sisters would have been distraught and bereft.
My older sister was with me the first time but I was told one of them kept calling and crying throughout the ordeal, wanting to know how I was doing. This is how close we were. My husband too, was beside himself with grief. He didn’t sign up for this and life had handed him a huge blow. However, he took it on the chin and was there from the beginning. I believe that can really mess someone else who’s mentally weak. The things I’m sure he had to deal with as my husband, he might never be able to talk about.
Most people looking from the outside would never know how hard it was, for us as a family. This was the reason when we went out or people visited, I had to make sure that I looked well to save my family the hurt of hearing the story repeatedly. This didn’t stop the steady deterioration of my kidney. I started with a marginally functioning kidney, still passing water and being able to eat what I wanted. I lived life without a worry until the day the doctor informed me, it was no longer possible to manage my condition.
Dialysis
At this stage, I was at stage 5 Chronic Kidney Disease (CKD). I never started from stage 1 like some people. I started right from stage 4. I’m ever grateful to that doctor who took an interest in my case. He gave me a little more than a year before I actively started dialysis.
As I mentioned in one of my earlier blogs, people can live with kidney failure for a long time. They don’t always progress to CKD. They might have to change their lifestyle though. Please access that blog here. I started dialysis with a lot of trepidation because I had heard horror stories and because of my needle phobia.
My experience with starting dialysis still traumatised me today, not because of my needle phobia, well, in part it was, but because of the hurdles I had to jump through to get started. I moved from peritoneal dialysis to haemodialysis because my peritoneum failed so I couldn’t continue with my treatment. The sessions I had with the renal psychologist were mainly to help me with my needle phobia but they did go over and beyond to deal with other stuff.
Haemodialysis was an eye opener; till today, I still maintain that if I knew then what I know now, I would have chosen haemodialysis right from the start. I felt wonderful after a couple of weeks I went on the machine. Yes, the needle phobia was the catch 22 but I was working through my fear. Nonetheless, I never overcame that fear but I was able to just grit my teeth and get the needles into my arms. Home haemodialysis meant I had more freedom and I could decide what time I did my treatment. It was sweet freedom!
Retrospective thoughts
Whilst writing this post, I reminisced about my life before chronic renal failure. It was a life lived without a thought for what will happen to my health in future. I didn’t drink or smoke but it never crossed my mind how important the kidneys’ function was in the body. Read more about kidney function here. The ability to eat and drink whatever I wanted and live life to the fullest, was not regarded as a gift but an entitlement. Our kidneys keeps all of us alive, it is just as important as any other organ in the body. It was only when mine got shot to pieces, it dawned on me that I had no clue whatsoever, how my kidneys had kept me alive all these years.
I was carefree, there was no sign that a few years down the line, I would end up where I was as at February this year. Again, as previously stated in my blog, there is no guarantee that this kidney will last a long time. I have been supporting people from Africa, who have kidney disease and no hope of the financial means to meet the demands of dialysis treatment. They are reading and asking questions of me, which sometimes, I cannot answer because I am not a doctor. I can only talk from my experience.
It is the same story each and every day and I mutter a small prayer that I had the best care possible. Even sometimes, with the best care in the world, it is not always possible to save a life. I have lost friends and family, both home and abroad to this disease. Some really had kidney disease and others were misdiagnosed, by the time the real cause of their illness was discovered, it was always too late to save them. Heartrending!
Heartrending Kidney Life Stories
I feel dejected when I think of lives that could have been saved; it is a waste of lives. Some of these lives lost, a few of them decide they don’t want to continue going the pain and depression associated with dialysis and kidney disease. They also want to spare their family the pain of seeing them suffer so they decide to take that leap to end their lives on their terms.
Some people struggle and try to live their lives to the fullest, doing what they love until the day the bell tolls for them. It is always really sad when we hear that one of our community has passed on, after a brief struggle. It is usually because of underlying conditions which they finally succumb to. After a few years on dialysis, others decide they would rather enjoy what is left of their lives. The problem with making a choice like that and treatment paused, is that it takes about 2 weeks(14 days) at least for the toxins to build up in the body and the body’s organs to start shutting down one after the other.
I don’t know how to describe it but I can say from my experience with multiple organ failure, it is not a pleasant feeling. Only people who have experienced multiple organ failure and survived it, can ever tell you how it is. I am one of the lucky few, who did, twice and I’m still alive today to tell the tale.
People’s Renal Experiences
There are others who have been lucky and received a “gift of life” from a relative, friend or a cadaver one from the transplant list. Unfortunately, things do not always go the way we might want. The loss can be devastating. Those who lose theirs because of one problem or the other, either push through the loss bravely or move back on to dialysis until they can find another one or because they’ve had too many transplants, the lost one was their last chance, so acutely feel the loss.
I know a hero who has had 4 transplants and can’t have any more but campaigns tirelessly in the community for organ donors. Their selfless act makes me want to do more for my community, too. There are some who decide that they couldn’t continue, partly because their quality of life has become non-existent; so they take the decision to go back on dialysis. It is brave to make such a decision but it is best especially if the new kidney isn’t functioning as it should.
Life Changing Decisions!
Would I make such a decision if it ever happened to me? I don’t know. Living life to the fullest and as best as I can is my main purpose now. When that time comes, I will explore my options and the different possibilities open to me. My decision will be based mostly on how it will impact on the life of my children and my extended family.
All the amazing stories of these warriors and the people who care for them every day inspires me to continue to fight.
I have kept my fistula fully functioning but I hope I never have to use it again. It still buzzes and I can hear it when I lie down on my left side. The buzzing is very loud when I put my ear close to my shoulder. This just reassured me that there are other options if anything ever happens.
Our Kidneys Importance
In my previous post, I talked very briefly on the importance of the kidney. I never wrote about why they were so important. The kidney is a very resilient organ’ it is like a kitchen sink drains. We pour everything down it including oil and it continues to work. One day, it would have accumulated too much sludge that it spills back its stinky, oily contents into the sink.
The kidneys work the same way in the background ensuring the body functions excellently. It removes all the wastes from different organs and it flushes them out of the body either as urine, sweat, urea etc. They take a lot of abuse off their owners until they are on the verge of collapsing, then they protest and raise an alarm. That’s when we notice somebody collapse; then the hospital performs tests on the person. The tests would always show the kidneys are almost at the point of giving up the ghost.
There are other situations like mine where a traumatic situation puts the body in a precarious position, there is nothing anyone can do to stop the kidneys shutting down in this situation.
Function:
Our kidneys are very important because apart from removing waste from our bodies, they work like industrial units performing the following tasks:
- Regulate the body’s salt, potassium and acid content
- Produce hormones that affect the functions of the other organs of the body. This means that the kidneys produces a hormone that stimulates the production of red blood cells that carry oxygen around the body.
- The hormones produced also help to regulate blood pressure and control calcium breakdown.
- Balance the body’s fluids
- Produce vitamin D that promotes healthy bones
- Remove drugs from the body etc
Loving Your Kidneys
We all need to lovingly care for our kidneys by avoiding substances that can harm them. Try to eat healthier and exercise more. Ensure that we do not abuse our body by indulging in recreational drugs or abuse medications.
You never know what you have until you lose it. This is the time to take a step back and learn from other people’s experiences.
If you live in Africa and want to know more about kidney disease, subscribe to my blog for more information. I also set up a Facebook Group Kidney Health Tracker
If you live in the UK or Europe, join dedicated Facebook groups like National Kidney Federation where you live. Don’t leave it until it’s too late.
Knowledge is Power
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