Angela’s Story – National Transplant Week
As part of National Transplant Week, we’re pleased to share Angela’s story about how organ donation improved her quality of life. If you’d like to find out more about organ donation, visit the NHS Organ Donation website.
My name is Angela Thomas and I am 63 years old. At the age of 35 in 1987, with my life before me, as my doctor, Dr Karim succinctly put it, I fell off my perch. Let me explain.
I was working in Hong Kong at the time, and steadily over a period of 3 months I began to notice that I was feeling a bit lethargic, tired, suffering the occasional bought of sickness and more worryingly migraine headaches and an old, old problem raised its head – cystitis.
I had suffered from cystitis frequently from quite a young age, was prescribed antibiotics and basically left to get on with it.
In Hong Kong, when the cystitis recurred it was suggested that I had a series of blood and urine tests. The results came back and I was told that my blood test was showing a surprising result that I now know was a very high creatinine reading. The strange reading was not explained to me when I enquired what it was, nor was I offered a solution, so I was not unduly worried at the time.
About 8 months later I came back to the UK. By this time I was not feeling great and suffering from really bad indigestion and heart burn, tiredness and lack of energy, and I had lost my appetite and dropped 2 dress sizes, so I signed on to a local GP Practice and was booked in to see a marvellous and progressive GP by the name of Dr Karim. I duly handed over my notes from Hong Kong which he read fully and announced that he intended to refer me to Dr Naik, the renal specialist at the Royal Berkshire Hospital in Reading. I had an appointment for a series of blood tests and a kidney biopsy, all rather quickly, before seeing Dr Naik.
The day of the appointment came and I took myself off down to the RBH. Dr Naik introduced himself, and then announced, ‘in the not too distant future you are going to need a kidney transplant. You have renal failure and your kidneys have ceased to function efficiently.’ I replied ‘Oh OK’. Dr Naik later told me that he had never had a patient before who received that news in such a calm way. I asked what had caused the kidney failure and was told that they had just worn out. I put it down to the constant cystitis and the fact that no doctor had got to the bottom of the cause of it.
In the short term I was put on a protein free diet which is virtually impossible to manage, the only thing I could eat plenty of was double cream! I was then booked in to have an operation to insert a catheter into my peritoneum for the CAPD (continuous ambulatory peritoneal dialysis) procedure. By this time I had so little energy I could not even lift a hair brush to brush my hair. My kidney failure is called membranoproliferative glomerulonephritis. It accounts for approximately 7% of primary renal failure in adults.
I settled into CAPD. You have to adopt a very strict regime of hygiene; a lapse could result in peritonitis. CAPD involves draining a litre of dialysis fluid into the peritoneum, leaving it in for 4 to 6 hours, this is called an exchange, and then draining it out and repeating. A small lead and capping device is the only visible sign of the CAPD device. You do this 4 times a day. The liquid has the effect of leaching out all the impurities that accumulate in the body that the kidneys usually deal with, unfortunately it also takes out all the good stuff as well so you have to supplement with vitamins and minerals, but a small price to pay when you consider there is no hooking up to dialysis machines 4 or 5 times a week for hours on end. The main drawback was a feeling of nausea for most of the day, but again a small price to pay, leaving you able to get on with your life. I was later told that had I complained about the sickness, I could have had a drug that would have combated it.
Once you establish a pattern and are coping well, then comes the option of going on to the transplant list. I was summoned to the Churchill Hospital, Oxford for an interview with the Transplant Co-Ordinator and members of the transplant team. This interview is to assess whether you have a positive attitude, whether you will be able to cope with the stresses and strains of the actual operation and the after effects of the drug regime that you have to follow strictly, and that you have family back up to help you through the whole procedure.
I had all of these calm and positive attitudes and a wonderful family who helped me through. I had been on CAPD for 10 months with no setbacks. I passed the interview and received a letter on December 22nd 1988 to say that I had been accepted onto the transplant list and in the early hours of the morning of December 23rd 1988 I received a telephone call to say that a donor kidney had been found for me and would I like it. Guess what I said? “Yes please.” I was told to get myself up to Oxford asap, pack a few bits and pieces and the operation was scheduled for that afternoon. It was the best Christmas present that I have ever received.
The operation was a success, not that I remember anything about it. When I woke up I was in an isolation room. I was told that I had immediately passed urine after the operation and to all intents and purposes everything had gone to plan. The worst was over. Surprisingly I had no pain from the operation at all. The donor kidney is placed in the right hand front side of the groin area and the non-functioning kidneys are left inside the body. Even the stitches when removed did not hurt. After 14 days, still very weak, but functioning well, I was allowed to go home. I had to go back to Oxford every day for three weeks for follow up blood tests.
I was 8 stone prior to the operation and within two months I had gone up to 12 stone. This in part is due to the strict drug regime, which involves taking a huge dose of the steroid prednisolone, plus the two other anti-rejection drugs. The affect that prednisolone has on you is making your muscles harden up and you become ‘moon faced’. The combination of the steroid, the Neoral Cyclosporin and the azathioprine also make you more hairy, my head hair at the front of my head became as coarse as a Brillo pad! These are the symptoms that the transplant team try and assess that you are made of the right stuff to cope with, without actually telling you that you will get these symptoms. I am told that some transplant patients in the past have been so upset by the side effects that they have stopped taking their meds and the kidney has failed.
My kidney, I was told, was very young but fully formed and functioning. I have never been more grateful for anything in my life than for that amazing gift.
After a month or so and because of the great care I received from both the Churchill and my family I was beginning to feel much better. I slowly got into a routine of going to Oxford for weekly checks, then monthly, and because I progressed so well it eventually became 3 monthly. I had no rejection problems at all and still every day thank my lucky stars. I then went back into the Royal Berks to have the catheter removed from my tummy.
My drug regime is now stable. I take 175 mg of Neoral Cyclosporin per day, 100 in the morning and 75 at night, 75mg of azathioprine in the evening, 40mg of atrovastatin for lowering cholesterol (a side effect of the anti rejection drugs) and the occasional ranitidine for a bit of acid reflux. The steroid tablets were stopped about a year after my transplant. This has been my regime for many years. For about 20 of the 27 years I was taking an antibiotic as a prophylactic to protect my bladder from the possibility of cystitis but these have now been stopped. My weight fluctuates between 11 stone and 11 stone 8, which is about correct for my height.
To date I am well and living life to the full. I am now 63 years old and hopefully have another 27 years of life in my transplanted kidney. I will have to take the anti rejection drugs for the duration of the life of the kidney.
There is nothing that I cannot do, my only restriction now is my age! I do not know who my donor was but I will always be grateful to the family of that young donor.
Monkey Wellbeing would like to thank Angela for her story. To join the organ donor register, visit the NHS Organ Donation website.
Image of former entrance of Churchill Hospital from Geograph.co.uk: http://www.geograph.org.uk/photo/4575048