Living with Renal Failure:

On 25th June, 2014, I received the gift of Life, a Kidney Transplant.This is my story.....

Aged 3 years, in 1973, I underwent operations on both kidneys to remove approximately 25 stones from each kidney. Kidney stones were discovered at that time as I contracted the measles. 

Aged 11 years the stones reappeared on my right kidney and I had another operation, a partial Nephrectomy, to remove them. It was bonfire night, 5th November, 1981, I remember laying in my bed unable to move, hearing the bangs and squeals of laughter. I had been dancing for 3 years then and now here I was knowing I would have to learn to walk properly before I would grace the foor again. This was my first memory of Renal Failure.

I recovered well and after weekly, monthly and ultimately yearly visits to the hospital I was discharged in 1988 and told that I would have no further problems. Little did I know that you ‘always’ have to live with renal failure.

I lived my life, worked hard, worked abroad, came back and set up my dance school and dedicated my life to my passion, Dance! 

In 1996, my dad, aged 52 years, suddenly died of a heart attack! I went to my GP, stressed, anxious and grieving. The doctor prescribed ‘atenolol’ blood pressure tablets. I took them with little knowledge of alternative ways to control my blood pressure and put my faith in the medical system.

From that day on hospital appointments became more regular and I learnt about CKD, Chronic Kidney Disease. As my appointments changed to monthly visits, and blood results showed CKD stage 3 then 4 then 5, I started to ask questions of my specialists; Can your Lifestyle affect your results? Can your diet help? Is there anything I can do to slow the process down?........the answer was always ‘no’!

As my creatinine level (Kidney Function) continued to fall I was transferred from The Manor, Walsall, to New Cross Hospital in 2012. My first memory of New Cross was being taken in to a small room and shown ‘models’ of alternative ways to diaylise. This was a horrific memory for me, I cried. My Kidney Function was at 17% and it seemed imminent that I would be on dialysis very soon. The nurses told me I had to choose between haemodialysis and peritoneal dialysis and was told that I would be on dialysis as soon as my creatinine fell to 15%. I was devastated, I felt fit and healthy, dancing every day and going to the gym 4 times a week!! This alternative would mean being hooked to a machine for 3/4 times a week for 4/5 hours each time. I was offered no support in their decision, only constant calls to try to persuade me to have peritoneal dialysis. My mum, upset at how devastating the appointments were for me, began tests to become a ‘live donor’.

In July, 2012, I went to see a homeothapist. I felt frustrated with the continual blood tests at the hospital, negative answers and lack of light at the end of the tunnel. During the appointment I was given a list of foods and drink to avoid. The main revelation: ‘atenolol’ was not to be given to anyone with poor kidney function. The doctors wouldn’t allow me to stop the prescribed tablets but when a blood pressure reading was particularly high, during an outpatient appointment, the doctor doubled the dose, however, I started to cut them in half. At this time I completely changed my diet, upon advice from the homeothapist, and I continue to abide by her instruction to this day.

After several further distressing appointments, at New Cross Hospital, I decided to seek a Professional Nephrologist. In November, 2012, my journey took me to Dr Graham Lipkin. I believed that I was feeling far too well to be ready to go on dialysis, Dr Lipkin thought so too. The first appointment was momentous in my battle to stay well and avoid the conveyor belt of Renal Failure treatment.  

Dr Lipkin referred me to The Queen Elizabeth Hospital, Birmingham, where I continued to see him, upon his request, throughout my care at The QE. I had an ultrasound, echocardiogram and myocardial perfusion scan in December, 2012. I was referred to the transplant surgeons to be assessed for transplant listing which was to be suspended until the relevant time. Dr Lipkin made his assessment on my ability to continue with dance, exercise and feeling well and healthy.

In July, 2013, my creatinine function was still at 14%. I believe that my attitude and change to lifestyle and diet along with the positivity from the renal doctors and staff at The QE helped to slow renal failure down. I continued with monthly appointments and always came out feeling positive.

In January, 2014, I was deemed fit for transplantation and an eGFR of 12%. Mum and I were given a date of 14th February, 2014, after confirmation by New Cross that the Organ crossmatch, betweem mum and I, was a success and mum would be able to donate.

Mum and I went into the surgical appointment full of hope and happiness. The appointment went really well until the surgeon requested mum to have a cervical smear and mammogram before the operation would take place. Mum’s instinct told her that it was all over! Less than two weeks later we discovered mum had a small lump on her breast. Mum would need an operation to remove the lump followed by radiotherapy. The transplant wouldn’t go ahead!

In March mum was admitted to remove the lump. It was an extremely distressing time for us all. Mum was devastated to learn she would not be able to donate, my family and I were concerned about her recovery and, at that time, state of mind and I faced dialysis and a complete life change! The stress I was experiencing, I believe, created a drop in kidney funtion level to 8%. The doctors immediately sent me for a surgical procedure to prepare for dialysis, a Fistula. This is a vascular access which makes ‘life saving’ hemodialysis possible for renal patients.

Throughout this 2 year period very few people knew what we were going through but I was determined to continue running my Dance School, ‘Steptacular’.

In March, 2014, I wrote a letter to all of my students and am humbled to say that the majority of people at the Dance School were saddened and upset to hear of my condition. Three students offered to take tests for live donation, one of them was only 16 at the time, I cannot thank them enough for their selflessness and huge heart. 

In May, 2014, the QE interviewed four family/ friends, out of the eight that offered, to put them forward for Live Donation tests. I am blessed to have such special people in my life. There are thousands of people on dialyisis praying for a new kidney and ultimately a chance of life.

My brother and three friends were chosen. Lengthy discussions within their families, emotional conversations, phone calls and meetings took place, everyone was scared! I am unable to express in words how I felt, but I do remember the Live Donation consultation at The QE. All potential donors were in a room with the live donor co-ordinator, I couldn’t believe these people were ready to donate an organ to save my life. I had to leave the room it was upsetting, emotional and in a way unworthy of me for them to have to go through this.

On Wednesday 18th June, my best friend, Marie, was chosen to donate. We thought this was our journey together, Forever Friends and soon to be a part of each other.

Exactly a week later on the morning of Wednesday 25th June, 2014, at 12.10am I received a call from the transplant team at the QE. The renal coordinator informed me that a cadaverous kidney, which was a 0.00% match for me, was being offered and would I wish to accept or decline.  I was so shocked by the call she gave me 5 minutes to decide but told me that if I didn’t accept then the kidney would be offered to the next patient.

My first thought was of my live donors and their families. I accepted this gracious gift. 

My instruction was to arrive at The QE within two hours. The kidney would not be guaranteed as a) the kidney was being flown from Glasgow, b) the surgeon had not seen the kidney c) a child may need it more than I.  

Walking into the hospital at that time in the morning felt like a ‘stairway to heaven’. I cannot explain why but I felt calm and relaxed. I had routine tests but the majority of the time it was quiet, peaceful. 

I was alone as my family were told that it would be 6pm before the operation took place, I asked them to go home. The surgeon came to see me at 1.15pm, he had very large hands I noticed, and half an hour later I was wheeled down to theatre. I didn’t feel scared or alone, I felt at peace.

Waking up in high dependency was scary and surreal, hooked to many machines and a scar running from my waist to my pelvic bone. Only the week before I was scared at the consequences of 'live' donation.  A week later I was out of HDU and learning my 26 daily tablet medication as well as back and forth to the hospital for regular blood checks, scans and transplant clinic appointments.

Things did not go well to start with. I was admitted to The QE for two weekends in July and again for two weeks in August. The kidney wasn’t draining well with my creatinine, at one point, rising to over 200 (expected function between 100-120). I had to undergo a further procedure called a nephrostomy. It was an extremely worrying time for us all as rejection of the new organ normally occurs in the first 6-12 months. Emotionally I was nowhere near prepared for family and friends reactions. I had unconditional support, love and care from most people in my life, others chose to walk away.

For those that were there and still are “saying ‘thank you’ sometimes seems inadequate but gratitude is one of the least articulate of the emotions, especially when it is deep”....

I am now 10months post transplant. Most days I feel well. I have started to dance again and go to the gym. I will respect my kidney, my donor and their family by staying fit and healthy. I will continue to look after my body, take my 16 daily tablets according to the strict guidelines, drink 4 litres of water daily and cook my food from fresh. I will raise awareness for Kidney Research and organ donation and hold charity events to support others who face this ‘silent’ disease.

I will have dark days and unwell days. It has not been easy and continues to be a struggle at times. Throughout, I remain strong and positive, in respect of my donor and their family, those that have stood by my side and, of course, myself . ‘The gift of life’ is precious, not everyone will understand my journey. I pray that they, and their loved ones, will not be faced with the same journey.

I am unable to construct a sentence to honour the person and family that saved my life. I will always hold them in my heart and hope for they read this in time to come and feel at peace that their loved ones memory remains strong.

Respect your life and yourself. I wish all of you reading this a healthy and happy life and urge you to support Organ Donation and Kidney Research, the silent yet fatal disease.