Sharon's story When Sharon Gill, 42, from Wolverhampton in the West Midlands was 10 years old, she discovered her dad was diagnosed with kidney failure at the age of 37 years old. Due to the circumstance of her dad’s diagnosis and her two uncles that had already passed away due to kidney failure, Sharon and her other siblings were sent for tests by her dad’s consultant to see whether they had inherited the disease. As part of National Organ Donation Week Sharon shares her story with us:My dad’s diagnosis came as a shock to us as we (including my mum) didn’t know that he had a kidney disease. My dad attended regular appointments but kept all of this to himself initially.My siblings and myself were sent for tests to see whether we had inherited the disease. Unfortunately, at the age of 10, I was diagnosed with the same kidney disease known as Alports syndrome.Alports is a very rare disease, especially in women. I was told that even if a female has Alports syndrome, she would normally lead a normal life and it would be rare for the kidneys to fail. I started attending yearly check-ups at New Cross Hospital in Wolverhampton.As I turned 18, I attended the renal clinic more regular, every 6 months. I had a few ultra sound scans over the years which showed that my kidneys were scarred and this got worse over the years. When I was 18 I lost one of my uncle’s to kidney failure, and then a year later, I lost my dad to kidney failure too. I always felt well in myself, was very energetic and had a very happy, loving childhood. However, I started getting headaches every day, my blood pressure (bp) was very high, and I was given tablets to control my bp but I found it hard to take them as I had never had a tablet before and I was petrified to swallow it. A few years later, I then got married at the age of 22 and I gave birth to my son when I was 23. The pregnancy wasn’t smooth sailing as I was in and out of hospital with high bp. This caused my kidneys to scar even more. I had my son in 2002 and he’s a blessing as I have a healthy child but I couldn’t go through the experience of pregnancy again. I then regularly started taking medication that was prescribed to me after the pregnancy. My bp was more controlled but I had to try different tablets as my bp was still not as low as it should’ve been. My glomerular filtration rate (GFR) and creatinine levels were still normal. I then started to feel extremely fatigued. I remember days when I even found it hard and exhausting just to get in and out of a car at just 30 years of age. After a blood test we discovered that my haemoglobin levels were very low. I used to attend the Chronic Kidney Disease (CKD) clinic to receive intravenous iron. I used to feel better after three courses of it, but I would have to go back at least yearly when my iron levels would drop again. The CKD team in Wolverhampton have been a great support. I have always felt at ease talking to them about my worries and concerns regarding my health. I didn’t really talk to anyone else about this and kept things to myself. I realised I was doing exactly what my dad did. Only my husband knew that I was attending regular appointments at outpatients. My appointments went from three months, to two months, to monthly then once a fortnight. In 2018, my consultant decided to put me on the transplant list when my GFR reached 13. I had a brilliant consultant and not once did I feel scared or worried as I knew I was in good hands. I went for tests at the Queen Elizabeth Hospital in Birmingham and I had to have a heart scan just to make sure I was suitable and well enough to be on the transplant list. I was also asked if any family members wanted to donate but I felt like I couldn’t do that to them. But they were willing to donate and made me feel comfortable by explaining their reasons. They were doing it for me. That was all. After thorough checks and transplant appointments which we attended together, they did not match. In November 2018, I had an operation under local anaesthetic and had a fistula on my left wrist. This was to prepare me for dialysis as my GFR was at 10 and creatinine levels were around 600. The fistula was not successful but they tried again with another procedure under local anaesthetic where they try and inflate your veins using radioactive waves. This was a little bit painful during the procedure but again this was unsuccessful. I was not eating properly and my weight was quite low for my height. I was always tired, always cold and I looked and felt drained out. I was getting fluid on my feet and in my body as I was unable to urinate much. My feet were huge and there were days when I couldn’t even get into any of my shoes. I found it hard to walk and I would get breathless just walking a few yards. I still didn’t stop, I carried on but at a slower place and took rests in between. I also suffered from restless legs and sleepless nights. I was given medication to help me with this. For me, this was a very hard time as it was a lot to be dealing with and was hard to accept as I was not normally like this, I was very energetic and outgoing. This also lead to anxiety and I felt depressed but I still never spoke to anyone about this. I was just pretending that I was okay in front of everyone. I have always been a strong woman and I couldn’t let people see me weak and neither did I want to worry anyone with my problems. I felt that the only people I could go to share some of my feelings with were the CKD team and my consultant. On 20th March 2019, I was going alone and wasn’t feeling well at all. I kept shivering a lot more than usual, I felt confused and I couldn’t seem to get myself up from the sofa. I also started vomiting. I called the hospital CKD team, they checked my blood results which were taken that week and my GFR had dropped to 5 and my creatinine levels were over 800. I rang my husband to come back home from work and we went straight into the hospital. My consultant was waiting for me in the CKD unit. They made me feel comfortable and then I was told that my kidneys had failed and that I would need dialysis. We had already spoken about the types of dialysis in transplant clinic where I decided to go with haemodialysis. I left the hospital with my husband feeling very upset. I’m glad that I got to come home and explain this all to my son, my mum and family. I felt anxious all night knowing that my kidneys had failed and was dreading the morning ahead. At 9am I was at the New Cross Hospital renal unit with my husband. I had the line put in, which was really not as bad as I thought it would be. The doctors and nurses were very caring and stood by my side throughout the whole procedure which lasted about an hour. This was carried out under a local anaesthetic. I then had 2 hours of dialysis. I felt sick and light headed during the dialysis. I thought this is what is going to happen every session. It did for about 3 weeks but then I felt better. The fluid was being removed and so were the toxins in my blood. My neck felt very stiff with the line in, but in May I had another fistula which was successful then the line was taken out. I had some ups and downs on dialysis. The worst part for me were the cramps. I was also restricted to 1 litre of fluid per day which I found hard as I felt thirstier. I would always be craving ice cold drinks. I had to resort to sucking on ice cubes as taking in excess fluid meant a harder day on dialysis. After 3 months of dialysis at the hospital, I was sent to a dialysis centre near me. I thought I wouldn’t like the change as I was used to the staff and the people in hospital, but I found the renal unit was the best place that I could be in at that time. It was a small centre, 12 patients and lovely staff who cared for us, made us laugh and made us feel comfortable from the first session. I will never forget the people I met there. After about an hour into dialysis, everyone would start to feel tired and fall asleep. I was always hoping and praying that one day I would receive a call from the hospital to say I was going to have a transplant. One day after 6 months of dialysis, I received a call at midnight and was told that I was a match for a kidney transplant. I went into the QE hospital straight away. I called all my family and told them I was having a transplant. I had all the checks and received 3 hours of dialysis during the night. It was around 7am and I had about 5 minutes left on dialysis. A doctor came down and told me that the transplant wasn’t going to go ahead. They couldn’t tell me much more than this, but the kidney was no longer available. My emotions were thoughts were everywhere. I didn’t know what to say. I was sad but I showed no emotion. I didn’t cry but I couldn’t speak to anyone. I was very sad. It felt like I was at the finish line but I was dragged back to the start. I kept getting congratulations messages from my family as I told them I was having the transplant. I wished that I hadn’t told anyone. A day after I went to my dialysis session. Everything felt weird. I could have had the transplant and I wouldn’t be here. The nurses came over to me to talk about what happened. I started crying and couldn’t even speak. They consoled me and I did feel better after talking to them and letting my emotions out. This is quite common and it has happened to many people. But I kept faith and knew I would get another call soon. On 9th July 2020, I received a call from the Queen Elizabeth’s Hospital at 8am. They had a match for me, this was during the time the Covid-19 virus was really bad and transplant lists were closed. I had to have a covid test and wait an hour to make sure I tested negative. I was then allowed into the main building onto the ward. My husband and son had to leave as they weren’t allowed into the hospital. This time round, I didn’t call anybody to say that I had been called in again. I was put on a ward which was designed as an ICU with one on one care. I really didn’t get my hopes up too high this time. I was waiting and waiting which felt like forever. I was nervous, fidgety and kept walking around the ward. By night time I still didn’t know what was going to happen. The next morning at 8am I had doctors surrounding my bed. They were there to take me for the operation as the kidney was available. I was happy, emotional and felt very grateful. I rang my mum and close family just before I was taken down. I gave them the good news and smiled all the way into theatre. (Even on the way out). God had blessed me and given me another chance. I still cannot explain how grateful I am to my angel donor and my donors family. I never knew who gave me this new life but I will never forget them. I woke up and saw many things attached to me. Morphine, lines in the neck, catheter, 2 cannulas in my arm, fluid bag and monitoring machines. But I still felt very happy and didn’t feel as much pain on the first day apart from a stiff neck. What I did realise is that my whole body was huge. I felt swollen but I was full of fluid. I went in at 59 kg and weighed 76kg a day after the operation. I hadn’t been able to urinate too for a number of years and the bladder needed to get used to this. The doctors assured me that the fluid would come off slowly and it did. Then my worst nightmare. Tablets! I had to take over 40 tablets a day through the day. After a couple of days, I started to walk a little. I felt a bit of pain but it was bearable. Day by day the drains and the needles were taken away. Day 5 the catheter was taken out and I felt relieved and I started to urinate. It was a great feeling. I started losing the fluid that I had gained. The one thing I couldn’t do was look at my wound. I was scared that it would be huge. The dressing which the nurses used to apply was a lot bigger than the wound so I had an idea of how big the scar was. It was a scary thought. I then looked at it about 5 days after coming home. Again it was not what I expected. It was okay and it was neat. I felt so much better in myself and I looked a lot better. I was glowing. I did develop a sweet tooth which I think was caused by steroids. Again I gained weight but I had to control the cravings. My face was round with the steroids and I hated it. Once the dose was reduced this also calmed down, thankfully. I was and I am very grateful and always will be. I can now eat everything and I have a good appetite. All thanks to my angel donor. I was told that I could write to my donor’s family via the kidney transplant team, but I couldn’t find the words or the courage. This was playing on my mind a lot and I also felt that I may seem ungrateful which was not true. Finally, after a year I put pen to paper. It was very emotional writing this letter but a big burden was lifted the day I posted the letter. Maybe now when I think about it, I could’ve spared myself some of the suffering by writing to them earlier and thanking them. A year on I am doing well and my kidney is working well. I am still attending regular clinics with the CKD team in Wolverhampton. I will now be seen every 3 months. I started going on long walks after five months of surgery. I guess this would’ve been sooner if covid didn’t exist. I did try cycling on an exercise bike but that made my stomach hurt a little so I’ve stuck to walking for now. I do lift light weights for my upper body but no more than 4kg. It’s better to do small amounts every day rather than doing too much and then being able to do nothing for a few weeks. My weight is nearly back to normal but I do still have some swelling on my stomach. It is going down slowly. At the end of the day, having my transplant has been a blessing and I would recommend it to anyone who has been offered one, and it will happen at the right time when it’s meant to be. I believe now that I didn’t receive the first kidney as this was what was meant to be. A better suitable match. Life is a lot better now than being on dialysis. All the pain and challenging times have been forgotten now that the hard days are over. Now my plans for the future would include travelling and trying to help people along the way. Hoping I can make my angel donor proud. Keeping fit is also a must so I make sure I exercise regularly. Healthy eating had always been a part of my life and is the way forward for me. I am now studying an online nutritional course which will be beneficial to me and hopefully to others too. I also would like to say I am looking forward to meeting new people through this journey and to share my experiences. I came across the National Kidney Federation (NKF) while sitting waiting for my appointment. I went online and saw all the great work the charity do. I would love to take part in the activities they do. I did send details of NKF over to my sister and she has volunteered to take part in a sky diving event next month. She has just opened a go fund me page and has already raised over £1300 and still has a few more weeks till she takes the dive! Here is her Go Fund me page for anyone who is interested in her journey or would like to donate in aid of the NKF please visit the link here. I thank god and thank my angel donor for everything. RIP my angel.