Live Donor Transplantation – Lynn and Billy’s Story

Lynn

I was diagnosed with APKD (polycystic kidney disease) back in 1990, a couple of years after I married Billy.

It is an inherited disease from my dad’s side of the family. His mum, sister, brother & niece have all passed away due to the disease. My dad was on dialysis, at home, for 14 years up to his death in 1984 aged 54.

I was under the wonderful care of Senior Consultant, Dr Iain Henderson and his team at the Renal Unit Ninewells. At the time I was working at a bank in Crieff and Billy came with me to most of my appointments as he worked shifts.  As I was regularly monitored at Ninewells, my condition was well managed and just before Dr. Henderson retired he mentioned that there had been new advances in Living Donor donations. He looked at Billy & said that there was a possibility, as a non family member, that he could be tested as a Live Donor for me. This is something Billy & I had never discussed.

Over the next few years I found I was starting to feel tired & lethargic. My energy levels were some days non-existent and just having a shower in the morning would wipe me out. I also found that working 5 full days was also taking its toll on my health. My work were very understanding & I was offered early ill health retirement at the age of 50. This helped a great deal because if I was having a bad day, then I could just take it easy & relax at home. I really missed my work as I loved the job I had and emotionally it took some time for me to realise that my health came first.

In early 2013 I was feeling at my lowest because my kidney function ( GFR ) had dropped to single figures. Billy had had all the tests and was found to be a match. For me it was an emotional time because the man I loved was going to undertake an operation to give me back my life. What a fantastic gift.

We met the Transplant Surgeon, Dr. Gabriel Oniscu in early November 2013 at Edinburgh and he gave us a date of 20th November. Just a few weeks to prepare ourselves for major surgery but I felt completely calm as I had complete confidence & faith in the team at Edinburgh. I was admitted on 19th Nov to the ward & Billy spent a night in the hospital ‘hotel’. Not quite 5star but it meant that I could see him the night before our operations, which to me was very important.

On the morning of my transplant I can remember going down to the theatre for my pre-op injection and the next thing I can remember was coming round in Recovery and my first words were ‘ how is my Billy’. I was told that both operations had gone very well & that Billy was in Recovery as well.  I was taken to a High Dependency Ward and Billy was in another HD Ward. I felt very little pain or discomfort and felt so much better when one of the nurses wheeled Billy around to see me for a few minutes. It was so lovely to see him and rather emotional for us both. How can you describe the feeling when you see the wonderful man who has given you back your life.

I spent a few days in HDU and was then transferred to the ward. It was difficult to say goodbye to Billy after he was discharged after 3 days but the travelling would have been too much for him and I knew he was being well looked after at home by his sister & husband. Each day I started feeling better and after 8 days in Edinburgh, I was transferred to Ninewells for them to continue the excellent care that I had received. I had been shown how to self administer my own medication in Edinburgh and that was a big help. When you arrive home it’s so easy to continue, as taking them at certain times is so important.

I am feeling so much better after my transplant and I have lots of energy but it takes a while to build up your stamina. I feel as though I can do so much but my body tells me to slow down and just enjoy feeling well again.

I was given a wonderful gift and I treasure every day and enjoy having my life back. We are both enjoying our passion of overseas travel and we already have 2 trips booked for 2016 and looking forward to booking more as I have recently passed another milestone of 2 years.

Billy 

Lynn was diagnosed with APKD – polycystic kidney disease –  at Perth Royal Infirmary in 1990, two years after we married.

Protocol at the time meant we had to ask to be referred to the Specialist Renal Unit at Ninewells in Dundee. This allowed her to be under the care of Senior Consultant Dr. Iain Henderson. Due to my shift patterns, I was able to attend almost every consultation with Lynn. This wonderful man and his team managed Lynn’s condition for just over 20 years, until he retired and handed the reins over to his colleague, Dr. Drew Henderson. 

Out of the blue around 2011, just before he retired, Dr. Iain Henderson commented about the wonderful advances being made in Living Donor donations. The donor was spared open surgery and the keyhole method was used. This was much less intrusive and gave a much quicker recovery time. He turned to me and said that even I as a non relative could be tested. Without even looking at Lynn, I jumped at the chance. It was projected that Lynn might need Dialysis in around 2 years, so it gave us ample time to have the tests done. Under the exceptional care of Transplant Coordinator Irene Russell, I immediately underwent a whole series of tests and was elated when it was found I would be able to donate. I should add that Lynn and I never ever discussed my decision to donate. She knew how determined I was and she would have done the same for me.

In early 2013, Lynn’s kidney function began a decline towards single figures and at the beginning of Nov. 2013, after meeting with Transplant Surgeon Mr. Gabriel Oniscu at Edinburgh, we were given a date of the 20th Nov. for the procedure. We came away full of confidence that we were in the most capable of hands.

Lynn was admitted on the 19th and I stayed overnight in a room at the hospital “hotel”. I reported to the ward early next morning and was in theatre before I knew it.

Both operations thankfully went extremely well and I only remained in for 3 nights. I was blessed with precious little pain or discomfort and was well looked after at home in Comrie, Perthshire by my sister Irene and her husband John. The journey from home to Edinburgh was 90 minutes each way, so we had discussed beforehand that I wouldn’t go back to visit Lynn as it was important for me to build up my strength to take care of her when she got home. I was able to keep in touch via texts and phone calls. It was difficult not seeing each other but it was the right decision. Lynn was in Edinburgh for 8 nights before being transferred for a prearranged 2 nights in Ninewells, from where she was discharged. Thereafter she was very closely monitored back at Ninewells every few days initially and very quickly the interval between visits was stretched.

We were fortunate that the operation was pre-emptive and were spared Dialysis. The sparkle is back in Lynn’s eyes. She has so much more energy and we are able to indulge in our joint passion for foreign travel. We are so privileged to be under the care of the Renal Team at Ninewells. Nothing is ever a problem to them and it just makes the recovery process that much easier.