It was May 1993, I was 23 years old, life was good, I had recently got engaged to my boyfriend, Dave and we had just exchanged contracts on our own home. I hadn’t felt really well for some time but put it down to stress of work and buying the house. I had gone to the doctor because my blood pressure was a bit on the high side; the doctor did a couple of further tests and referred me to the renal department at the Manchester Royal Infirmary.
I attended an appointment after having further tests to be given the devastating news that my kidneys were failing due to reflux (Kidney reflux means that one or both valves in the ureters are not working properly, which can cause urinary tract infections) , I didn’t understand, I hadn’t had any symptoms of water infections. These had gone undetected over many years and my kidneys had suffered scarring. I was told I would need a transplant. I sat opposite the doctor the words leaving his mouth but not reaching me, it wasn’t me sitting there he was talking to somebody else.
It took me a long time to come to terms with the news, my family, boyfriend and work were very supportive but at the same time worried and devastated. It was hard adapting to the renal diet but I knew I felt much better by watching what I was eating and drinking, all the staff were brilliant, giving me lots of support in helping me to decide which dialysis would be best for me. I decided to have CAPD as this method would mean I could carry on working. Around the same time I was fortunate enough to be put on the transplant list and both my parents were going through tests to see if they were a match and well enough to donate. I had very mixed feelings about this and really didn’t want me parents to go through any of it.
In the August 1993 I had a Tenchkoff fitted and had the training to enable me to do everything I needed to do. I managed to keep my levels static for some time but in January 1994 things started to get worse, I was still working fulltime but feeling really tired. I had resigned myself to a very different way of life. My Mum who was in her late 60’s was found to be compatible but I really didn’t want her to go through it, I prayed I would be blessed with a second chance of life.
It was mid-morning on 21st February 1994 when I got the call I had been praying for, I rang my parents and boyfriend straight away and drove home from work with a plethora of emotions going through my head. We arrived at the MRI just after lunchtime and spent a few hours going through tests to make sure I was well enough to go through the operation and that I was the right person to receive this very precious gift of life.
I went to theatre at 7.30pm that night, again I was frightened but knew I was blessed to be given such a valuable gift. The next day with my new kidney working well I started to feel so much better, I was a little sore but I started to realise how poorly I had been before. All the nursing staff, doctors and domestic staff were absolutely brilliant and helped me with my recovery. I will be honest at times it was a little tense waiting for results and praying that the kidney function was still good. I had been in hospital about a week when my results started to go off a little and I didn’t feel too well, the doctors told me they thought I might be rejecting so the doctors conducted a biopsy which confirmed I was. I was treated straight away and within a week everything was back on track. I was back home within 3 weeks and started visiting the outpatient’s renal clinic where the staff and doctors took great care of me.
All the way through my recovery the donor family were always on my mind and I think the emotions of guilt, gratitude and thoughts of what they may be going through were constant, even now I often think of the donor and family.
I returned to work after 3 months and Dave and I decided to get married, we had both had a bit of a tuff year and we really wanted to celebrate everything so we decided to go to my local church and set a date, we got married on 8th October 1994 in front of our closest family and friends and Phil and Anne who both worked on the renal unit at the time came along to see me and Dave tie the knot on a cold but sunny autumnal day, it was a very memorable.
One of the things I really wanted to do was start a family so after a year I asked one of the doctors when if possible would it be safe to consider starting a family, the advice was to wait two years after the transplant and that’s exactly what we did and on 23rd September 1996 I gave birth three weeks early to a beautiful baby girl, Sophie, the best day of my life. Six weeks after Sophie was born our family GP advised us to have Sophie tested for reflux as it could be hereditary, Sophie was diagnosed with reflux but just on the right side, she was given antibiotics straight away to prevent any infections. The doctors at the Children’s Hospital kept a check on her for the next 2 years and when Sophie was two years old we were told the reflux had gone, the valve had repaired itself. We were delighted by the news.
I decided to go to university and completed a degree related to work which eventually lead to a promotion in a job working for the NHS I really enjoy and life has been absolutely brilliant. I think when something like this happens to you it does change you. The little things in life that normally would be an issue really don’t matter anymore and I would like to think that the experience has made me into a better person. I have achieved so much thanks to a family who considered others at an absolutely devastating time.
In November 2011 after 18 years of working really well my kidney was becoming tired and my renal function started to drop, by February 2012 I only had 13% kidney function so I was referred to the pre-dialysis clinic and met the wonderful team from the other side. Again I opted to have CAPD at home over night with a machine, which was a big change to my last introduction to this method of dialysis. Again I managed to keep my renal function pretty stable on the renal diet and I started to make plans again for a very different way of life.
During the next few months I underwent lots of tests and medical examinations to ensure I was fit and well enough to hopefully go on the transplant list again. In the meantime my wonderful younger brother had insisted he wanted to help and told me he wanted to see if he could donate a kidney, as he spoke I started to cry, I couldn’t even consider him going through all of that but he sat me down and it was at that point I realised how sincere and determined he was, his words ‘your my sister I want to help you’ meant the world to me, we both sat with tears coming down our faces. My brother Frank started to undergo tests to see if he may be a match, a few months later we got the news that he was, again I had mixed feelings about it really not wanting him to go through it but he reassured me it was what he wanted to do. In September I attended an appointment to see a lovely Transplant Surgeon who talked me through everything and suggested even though a family member had come forward he still advised me to still go on the list.
The next part of this story is not what I ever imagined would happen and shows how truly blessed I have been, it was 5.00am on Friday 7th December 2012 when the phone in the bedroom rang, my husband answered it and I fully expected him to say the alarm at his work had gone off and he needed to go but he said’ it’s the nurse from the hospital’ I could hardly believe the words I was hearing. I put the phone down and looked at Dave, ‘they have a kidney for me and they would like me at the hospital for 7am’ I got ready but all the time thinking this is too good to be true. We got to the hospital and I went through the tests to make sure I was suitable, time seemed to go so slowly and from the moment I had the phone call I was thinking about the donor and their family with waves of guilt and thoughts of them all, I also felt really guilty about the fact that I had not been on the list very long.
I went to theatre at 3.30pm that day with very similar thoughts and emotions going through my head but as I lay there I remember the anaesthetist saying we are going to give you some oxygen the next thing I was hearing my name and coming round in recovery, I vaguely remember going back to the ward and seeing my mum, dad, husband and daughter and smiling at them and telling them I was okay. The next day I was introduced to the new medication regime which was very different to 18 years ago, the ward was also very different and I certainly noticed how busy all the staff were but so dedicated to making sure everyone was okay.
Recovery seemed very slow and the waiting for the wonderful doctors to do their ward rounds to find out if everything was going to be okay was quite tense, my new kidney took a couple of days to really start to work well and after 6 days I was allowed home. Visits to the outpatients were every couple of days to start with but I was more than happy with that.
I have had my new kidney for 4 weeks and starting to physically feel so much better I still seem to be struggling emotionally, not sure if it’s the time of year but really thinking about the donor family and I really would like to let them know how grateful I am but ‘thank you’ doesn’t seem to touch the surface of how I feel. I have been so blessed to have been given yet another gift of life and I would like to dedicate this story to both donor families, all the nurses, doctors and surgeons who all go beyond their call of duty and my family who have breathed every moment of the last 19 years and been there every step of the way.