Organ Donation Week: Dennis' story
Dennis Lea is a Barts Health staff member and patient who received a kidney transplant at The Royal London Hospital in 2000. For Organ Donation Week his wife Val shares their story and her tips for patients and families dealing with organ failure.
It was January 1996. Dennis was just 50 and fit and healthy. He worked as a carpenter at Whipps Cross Hospital. He never had time off work sick but one morning felt really unwell. He planned to go to work but I sent him to our GP who found Den had very high blood pressure. He was referred to Whipps Cross for tests, including a lumbar puncture.
Tip No. 1: Before any procedure, go to the toilet – there’s nothing worse than having to lie still afterwards with a very full bladder!
Den was diagnosed with kidney failure and referred to the Whipps Cross renal team. We attended regular outpatient appointments where they carefully monitored Den’s condition and treated it with various tablets. In July, the registrar gently explained to us that it was very difficult to find the cause of the renal failure and despite their best efforts, Den could be on dialysis within a year. Our response was “Oh, all right. Thank you.” Despite reading what we could, we had no real idea of the implications.
Tip No 2: Join a few renal patients’ organisations, e.g. Kidney Care UK, the UK National Kidney Federation, your hospital Kidney Patients Association. The hospital staff will be unfailingly kind and helpful but there’s nothing like hearing the reality from other renal patients.
After one restless night towards the end of that year, with Den’s appetite becoming steadily poorer, I phoned the hospital and was told to bring Den into A&E. When the consultant saw Den, he was very angry with me. “Can’t you see how jaundiced he is?” he said in frustration.
Tip No 3: Family and friends are too close to observe real deterioration. Ask for pointers/milestones for when action is needed.
Den was transferred to The Royal London Hospital the following day. The renal team stabilised Den but said that his kidneys resembled pickled walnuts and were no longer working. He had to go on CAPD dialysis. The deterioration had taken only eight months from first diagnosis!
Arrangements were made for Den to go into hospital for a catheter to be inserted and for the two of us to have training on CAPD. We spent a week at the RLH and then went home to do the first exchange. We started at 6pm and finished at midnight! We were both in tears. We had to follow the procedure very carefully and be scrupulously hygienic. This exchange had to be done three times EVERY day. Needless to say, after some practice, Den got it down to a fine art.
Tip No 4: Don’t be afraid to ask questions. Make a list of everything you want to know and write it in priority order so that you get answers to the most important questions first.
During an early appointment with the renal team, Den asked how long he was likely to live on dialysis. He was told ‘around five to ten years’. I asked if there was anything he wanted to do before he became too ill. This discussion sounds very cold and heartless but, in fact, it was a very important one. I told him that we would try to get him anything he wanted but that I didn’t want to reach year nine when it was too late and be told he had always wanted to learn to fly a plane! Den couldn’t think of anything special but said as he really enjoyed holidays, that was what he wanted to do.
Tip No 5: Write a bucket list. It can contain dreams – you never know – but also small things that you never get around to doing.
We went for days out in the UK and had a few holidays and the hospital and renal supplies teams were wonderful in making it happen. We visited the Czech Republic for a wedding, Tenerife, Florida and went on a short cruise. We did have the occasional hiccup such as when US customs stopped two lots of dialysis liquid being sent to us ‘in case it contained smuggled goods’ but we sorted it out.
Tip No 6: Plan ahead. Go for a day out on a quiet day and phone beforehand to check if they have facilities that can be used for dialysis e.g. a first aid room.
Tip No 7: Make it easy for people around you; reassure them that you are self-sufficient so that they are keen to help you rather than frightened of the unknown.
Tip No 8: Permanently carry a list of your current medication, hospital contact numbers and a potted medical history. This is vital if you need help in an emergency.
We had lots of laughs but life was hard for Den. Den continued to work full-time at Whipps Cross and did dialysis during lunch time in the Occupational Health Department. He worked hard at sticking to his diet, medication and dialysis routine but got peritonitis twice. Over the next three and a half years his health deteriorated badly until Den was doing five exchanges each day including on a machine during the night.
Tip No 9: Try to do something every day. It can be small, like shopping, but it gives a purpose to getting up in the morning.
Den was on the transplant list but no calls came until March 2000. It was late, we had just arrived home after a long journey from the funeral of a very good friend. We were tired, upset and just wanted to rest. The phone rang and it was THE call. A kidney was available and Den needed to come in for tests to see if it was a match. Imagine if I had been too tired to answer the phone!
Tip No 10: Keep the phone on and a bag packed at all times.
It was a good match and Den had the transplant the next day. The surgery went well but the kidney didn’t work. The transplant team reluctantly put him on dialysis saying that they wanted the kidney to work for itself. Finally, it happened. That was 19 and a half years ago and his life was transformed.
Den is a lovely person who would help anyone. His philosophy has always been to just get on with whatever is thrown at him.
You can only imagine how grateful we are to the family who made the decision to donate their loved one’s organs. I’m in no doubt that Den had only a few months left. Now he has lived to see our son marry and have children. Thank you to everyone on the renal teams who looked after him (and me) and especially to that very special family.
Written with Den, by his wife and carer Val