Tell us a bit about yourself!
I’m 37 and married with a 12-year-old son. We live in London, England, and moved here from Australia a year ago. I’m on staff at a church as a children’s worker. In August we celebrated my 5th kidney birthday.
When did you begin to have trouble with your kidneys?
I have Adult Polycystic Kidney Disease (APKD), which is an hereditary disease. Cysts grow in the kidneys and squash healthy kidney tissue. I was tested for the disease when I was 20 because my mum was diagnosed with APKD.
When I was 30 I began to experience persistent chronic pain, nausea and nerve pain. My kidneys had grown so large with cysts that instead of each being the size of a fist it was the size of a football. I’m under five feet in height, and the kidneys took up a lot of space! I wore maternity clothes for three years because my middle was so extended. The left kidney was pushing other internal organs, pressing on nerves and taking up too much space for me to be able to eat properly.
What sorts of treatments did you and your doctor try before they put you on the transplant list?
There is no cure for APKD at this stage. For three years I tried different ways of managing the pain including many classes of pain killer (it turned out I’m allergic to all opiods, so there were no drug options), hypnotherapy, physiotherapy, TENS machine (a belt with little electric shocks), and spinal injections. I was also being treated for depression from living with chronic pain.
In the end, my doctor offered to remove the kidney for pain relief. This is an unusual step, and required considerable conversation. The left kidney was seriously limiting my quality of life, but it was doing more work than my placid right kidney. Removing the left kidney would put me into renal failure, which is fatal unless treated with dialysis or a transplant: the renal team wouldn’t be able to remove the kidney unless I had someone willing to give me one of theirs.
Can you tell us about the process of finding a donor?
Finding a donor for me was quite different to many other people’s journey. I mentioned to my Dad (who lives in the USA) that I needed a donor, and that the first hurdle was finding someone with the same blood type as me: O negative. He says that as soon as he knew he was O negative he didn’t even feel like he made a choice, it was just the thing he knew he was going to do.
After initial health checks with his family doctor, my Dad flew, with my Mum, to Australia from the USA. I had many, many tests to ensure the rest of my body was going to support a transplant. And Dad had many tests to be certain his body would handle living with only one kidney. Only after we were both cleared could I have my right kidney removed. I spent a week recovering in hospital, most of that in ICU, after a traumatic surgery and then needed six weeks to regain enough strength for the transplant surgery. I needed dialysis during this time, as my remaining kidney couldn’t cope by itself. I went for four hours every other day to be hooked up to the dialysis machine via a central line that had been inserted in my neck, so that my blood could be ‘cleaned’.
What happens when you get a transplant?
Dad and I went to the hospital the night before our surgeries. He went to surgery first, and then I waited with my husband and Mum until it was finished so I could have my turn – a surreal waiting experience! Once the surgeon had finished removing Dad’s kidney I went in to operating theater.
The first thing I remember after the transplant is briefly regaining consciousness and saying as loud as I could ‘I did it!’, then lapsing back into unconsciousness. It was certainly an enormous relief to have got that far.
After a transplant the recipient’s body is deliberately immune-suppressed with drugs so that the donor organ is not rejected, otherwise the body would recognize that the kidney is foreign and attack it. Being immune suppressed means that the body has no way of fighting other things, either. So for the first few days after the transplant I was in isolation, with a nurse in the room 24 hours a day. Everyone who came in to my hospital room was scrubbed, gloved and gowned. I was able to go home in less than a week.
For the donor, removing a kidney is a more painful operation than receiving one. Dad was in a lot of pain in the first days, but able to be home in a few days. He was able to travel back to the USA after three weeks. For about 12 months after he would say ‘I was thinking of you particularly today’, meaning that there was some pain when he put his belt on, or twisted in his chair, or got out of bed suddenly. But five years later, there is no ongoing pain, and no ongoing health issues.
After I was discharged I went to the hospital every morning for blood tests and monitoring. This stepped down to three times a week, then once a week, then once a month. Now I see a renal doctor about every eight weeks.
How did the people in your life react to your father’s decision to give you one of his kidneys?
Everyone I have spoken to has been very positive. Many people are quite moved at the gift of life that my Dad has given me. My Mum had a kidney transplant 13 years ago and needed to wait on dialysis for over three years for a suitable donor kidney to be available. We are all amazed and grateful that I was able to navigate a different path through Dad’s generosity.
Does being an organ transplant recipient affect you on a daily basis?
Immune-suppression is a daily business! My immune system will always be deliberately compromised so that the new kidney is not rejected. Each day I take a lot of medication. At the moment I take at least 15 tablets a day, which is a significant reduction from the 37 a day I started on.
My body is not as good at fighting infection, so I need to be careful about cuts and sickness. My body doesn’t heal as well, either. I have a cold at the moment, which knocks me around more than other people. And having the flu can easily mean a stay in hospital. I’m not able to travel as extensively as before (my husband and son have traveled to Thailand and Africa without me because I need to be close to a first-world hospital and malaria is a very bad idea!).
More importantly, though, having a kidney transplant affects me on a daily basis because now I have energy and strength. I’m able to think more than an hour ahead. I’m not just trying to survive each day, but am living with passion and freedom. It’s a wonderful thing!
Why should people check that ‘donor’ box on their driver’s license?
Organ donation changes lives. Not only have I been profoundly altered by the new chance at life I’ve been given, but my husband and son are able to live significantly different lives because I’m well and energetic. Our lives are no longer dominated by sickness and pain. This new life has been possible because of Dad’s love and sacrifice. Many people who need a transplant are not in the position where a family member is willing or able to donate an organ, so stating your wishes to be a donor on your driver’s license, and telling your family that you want your organs donated, could profoundly change another family’s life.
Are you guys registered donors? If you’d like to become one, you can register here. Any questions for Megan?