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Kidney failure - my personal journey

Everyone who has gone through dialysis has different experiences, health problems and opinions. Debbie – who went through two years of dialysis – talks about the mental, physical and emotional aspects of her journey.

I became a Type one diabetic at the age of 13. At this time I was 42 years old and 29 years of living with diabetes had started to affect my kidneys.

In October 2008 I attended an appointment with a kidney specialist. My diabetic nurse had referred me as my kidneys were beginning to fail. The doctor sent me for various scans, one of which revealed that my kidney function was only 50 per cent and another discovered a growth on my right kidney.

In March 2009 the growth was removed. Three weeks later I was told that it was only a cyst. This was a great relief, but the operation had unfortunately caused further kidneys damage.

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Debbie says being told she could have a life without diabetes came as a shock

In October 2009 I attended another appointment with a kidney specialist. Blood tests had revealed that it would not be long before I would have to start dialysis and that he would like to refer me for a kidney-pancreas transplant. This would mean that I would have to pass several different scans before I could be placed on the transplant list.

At this stage I became quite emotional, I had not been aware that a pancreas transplant was possible. After being a diabetic for so many years, being told that it could be possible to have a life without diabetes came as a big shock.

In December 2009 I had to decide which type of dialysis to go for. I was shown around the hemodialysis unit whilst patients were undergoing treatment. This type of dialysis meant I would have to go to the renal unit three times week and over a matter of hours have my blood cleaned.

There was an alternative type of dialysis; this was called peritoneal dialysis also known as PD. This meant that I would have a tube surgically placed inside my stomach. I would also need a lot of storage space - this was for all of the boxes of fluids and medical supplies that would be required. I decided that I did not want to have a tube permanently hanging from my stomach and I did not have enough storage space at home, therefore hemodialysis would be a better choice.

In January 2010 I was all set to resign myself to three days a week on a dialysis machine. It was then that I met a nurse from the home dialysis department. At this stage I had not been given any information regarding living with kidney failure, how it would change the way I lived my life or how it would affect my health, therefore I was eager to listen to her advice.

She advised me to change my mind and to consider PD. She felt PD would be better for me as hemodialysis was only for people that were old or unable to look after themselves. People on hemodialysis stopped passing urine so I would not be able to drink, where people on PD continued to pass urine therefore I would be able to continue drinking. She also told me that I would be able to maintain a normal life, as I would be able to dialyse from home at times that was convenient with me. Because of this advice I changed my mind and decided that PD would be a better choice.

Even though I was desperate to start dialysing from home again, I knew I would miss the community that I had become a part of.

Debbie

In March 2010 I started PD dialysis. This was a very difficult time for me as I became very depressed. Normally not a tearful person, I spent the first three months in tears. I had always thought that suicide was the easy way out of a bad situation, but if that had been the case I would have done it. One day whilst my mother was visiting my sugar level dropped, I blacked out and she called an ambulance. After recovering I would normally have been so grateful to the paramedic, but on this occasion I was overwhelmed with disappointment. If I had been alone it could have been a way out of the miserable life I was being forced to live.

During the first three months my physical health also suffered. I constantly felt cold and tired, my legs were swollen, I was getting horrendous night sweats. My head and shoulders were covered in spots, I would wake in the night finding it difficult to breath and my blood pressure was so high it was causing unbearable headaches.

Looking back now, those first three months were the worst, mentally and physically. Every time I attended the hospital I went to see the PD nurses, but when I kept on about the problems I was still getting, I was made to feel as though I was being a nuisance. I now had the added problem of being allergic to the dressings that I had to use on my stomach, the adhesive burnt my skin and made it itch.

I felt so alone with having to cope with these ongoing problems, not having anyone to be able to give me any answers to why I was getting them, I decided that this must be what living on dialysis was like, and this was what I would have to accept.

In June 2010 I had to have my blood taken by one of the PD nurses. This had to be done once a month, the nurse on duty asked me how I was, and once again I spoke about the problems I had been having. This nurse seemed to take more of an interest than the others. She asked me what my fluid allowance was. I shrugged my shoulders as I had not been given one, she then asked me how much urine I was passing.

Once again I shrugged my shoulders as I did not know. She then started to explain how dialysis did not replace the kidneys and even though I was still passing urine, I would not be passing the amount that I should. It was the build-up of fluids that was not either being passed through my kidneys or being taken away by the dialysis that was causing the swollen legs.

She then explained that when you retain too much fluid, the heart works harder to move it around the body, and that this was why my blood pressure was so high.

This had been the first time I had been spoken to regarding fluids. I knew that the kidneys filtered the toxins out of your blood, so common sense told me that dialysis would do the same, but what I did not know was that fluid that your body did not require were filtered through your kidneys into your bladder, so it was only now I was aware that dialysis also removed excess fluids from your body.

The nurse gave me a container to measure the amount of urine I was passing over 24 hours, she also told me to try not to drink more than one litre of fluid a day, remembering that fluid was also in a food. I did as I was told and I discovered that I was only passing 500mls of urine a day.

Over the following two to three weeks I managed to cut my fluid intake as much as possible. Slowly the fluid that I was retaining reduced and my legs returned back to normal. I stopped waking in the night struggling with my breathing; even my blood pressure began to come down and over the following months my blood pressure tablets had to be reduced.

In August 2010 my monthly blood tests revealed that my potassium level was nine when it should be five and my phosphate level was three when it should have been one.

After discussing my diet from the previous weeks it was discovered that being referred to see a dietician had been overlooked. I eventually met a dietitian after being on dialysis for six months; she told me that it should have been within the first two. I learnt that keeping to low potassium and phosphate diet was very important; I discovered that it was the intake of too many high phosphate foods that was causing the mass of spots on my head and shoulders.

I then discovered that the constant muscle twitching, which I had been experiencing for months was the result of eating too many high potassium foods, and as the heart was a muscle the twitching could have caused a cardiac arrest. The dietitian then gave me plenty of advice and diet sheets. She also gave me her direct number so that I could contact her if I had any questions regarding the diet. 

The strict fluid allowance and diet was extremely difficult, but in time it started to pay off as I began to feel better in my health. Keeping to a low phosphate diet did not cure the spot problem, but they did reduce considerably. I now felt very disappointed that neither the home dialysis department nor the doctors had thought to either, refer me to a dietitian or think to speak to me regarding my fluid intake six months earlier. If this happened earlier I would not have experienced the problems that I had.

By December 2010 I had no other choice than to change to hemodialysis. Over the previous months I had tried every different dressing I could buy, but they all made my skin burn. The nurses could not come up with a solution to this problem, so I was left with no other choice that to leave the dressings off, therefore it was only a matter of time until I picked up an infection.

The change of dialysis did scare me to begin with, but within a few weeks I started to accept the change and I soon got into the new routine of dialysing.

Constantly feeling cold and tiered had made my life a misery for nearly a year, I only left the house when I had to and when I did I would constantly shake. I would do anything to get out of going out, being at home was the only time I felt warm as I could wrap up in layers of warm clothes and blankets. After only being on hemodialysis for a few weeks, I found that I had a lot more energy and I began to feel warm again.      On 25 January 2011 I was finally activated on the transplant list. I had now been on hemodialysis for two months and meeting so many other people that were also living with kidney failure was a great help to me, I finally met people that I could relate to. I found that the people that had been on dialysis for years were a great support. They were always willing to give advice to the new patients. Since being on dialysis I had been so depressed, meeting people that either had or were still experiencing the same problems as me, gave me the support that I desperately needed - finally I was not alone.

During the dialysis sessions, the nurses were so efficient and committed to the well-being of the patients, the standard of care that I received was excellent.

There was a selection of different health problems that caused kidney failure but I found that the most common was Type 2 diabetes. Many people I spoke to had become diabetic in their forties and as they had not followed the correct diet had then gone on to suffer kidney failure.

Some had been offered transplants but on the condition that they would have to lose weight. Unfortunately a transplant was not enough of an incentive for them to do so. As a result of this I met many that had gone on to having toes, feet and legs amputated, serious heart problems and blindness.

On 4 February 2011 I received a call to go straight to the hospital for a possible transplant. I waited for nine hours but unfortunately it was not a match. In April 2011 I attended an appointment with the transplant doctor, I was informed that my blood was 95% full of antibodies. This had been caused by the blood that I had been given in theatre in March 2009.  This meant that I would have to have a donor with the same matching antibodies as me and that there was only a 5 per cent chance of finding one. I had to accept that it could be a long wait; this was a worry as I had recently been told that the average diabetic only has four years on dialysis.

On 10 September 2011 I received another call to go to the hospital for a transplant. After waiting 19 hours I was informed that even though it was a match, unfortunately the transplant could not take place as the pancreas was damaged - I was devastated.

In February 2012 I started home hemodialysis. The 15 months that I had dialysed in the renal unit had been a mixture of highs and lows. I had met some wonderful people and I knew that once I started dialysing from home, I would miss the contact with like-minded people.

I had met people that had since died, this had been heart breaking and the loss had been felt throughout the renal unit, but meeting the people that went on to receive transplants, always brought joy and hope to the ones that were still waiting. Even though I was desperate to start dialysing from home again, I knew I would miss the community that I had become a part of.

I started home hemodialysis at the end of February this was very stressful to start with as I had been used to having renal nurses around to assist me, now I was on my own, but the feeling of being independent was great.

I felt so healthy I started swimming two to three miles a week, I was full of energy. Living on dialysis had always been a nuisance, but I found that home hemo was the best form of dialysis to enable me to live a near normal life. Instead of having three long sessions a week I now had five short ones so therefore the blood was being cleaned more regularly. The following six months were great, this I felt was second best to getting a transplant.

On 19 August 2012 I received a kidney pancreas transplant. The doctors were very pleased with my recovery and that improving my health by changing to home hemodialysis had really helped. I still find it hard to believe it actually happened, I now have a new life and organ donation made this possible, the organ donor that gave me this precious gift will always be in my thoughts.

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