The things we do for love
I arrived home to a mountain of cards!
“Get well soon” they instructed, “How brave you are” others said. I was overwhelmed by peoples kindness, but I didn’t feel ill – sore yes, but brave certainly not. I had just had a four day stay in the Freeman Hospital, undergoing a Laparoscopic Donor Nephrectomy, (donating a kidney to my precious daughter to you and me).
That’s what mums are for, their love knows no bounds.
Our lovely daughter Lou was born in 1975 and diagnosed with Cystic Fibrosis, a cruel genetic disease which still claims the lives of many young people. Despite complex and intense treatment, by the age of 20 years her lungs were destroyed and Lou went onto the Lung Transplant list. After 18 desperate months and in the last days of her life, Lou received a double lung transplant. In their time of great sorrow, the family of a 32 year old man gave consent for organ donation and Lou received his lungs which saved her life. The sunshine came back into our lives, we will never forget this special family. After a rocky post-operative recovery, Lou thrived and enjoyed a life she had long been deprived of and was a distant memory.
After several good years, Lou began to have problems. The cystic fibrosis drugs, the anti-rejection drugs and already being a diabetic took their toll on Lou’s one functioning kidney, – she was in renal failure, we were devastated.
The family met the renal team at James Cook and decided we would try for a live family kidney donor. Initial tests showed that I, Mum, aged 62 years, was the best match. Lou’s husband, her dad, brother and sister were all devastated, they all thought that they would be “the one”, all felt a sense of failure.
So for me, over to Doctor Jonathan and Alison to start complex and relevant tests to make sure that I could offer a healthy functioning kidney to Lou, leaving an equally good organ to keep me healthy and problem free. The tests are time consuming and mentally fatiguing, and waiting for the result can be difficult and emotional. The thought of a failed result can plunge you into the depths of despair but relief and elation come with a good result.
At last, tests all completed and satisfactory, I was on my way to Newcastle. The visit to the Freeman introduced us to Kim, the live organ transplant co-coordinator, oh so funny but reassuring and supportive, and an excellent surgeon who went through everything step by step, accepted my donation and we were given an admission date. At the same time, Lou was seeing the transplant team, remember, they don’t take the kidney, they “just” transplant it. You’ll each see different surgeons.
We decided we needed a plan. Two family members hospitalized together is difficult, especially when one will be discharged on the fourth day but will still require care after major surgery. I set to and filled the freezer and the cupboards, and demonstrated the mysteries of the washing machine. We decided that Lou would be discharged to us, so that my husband could care for us both and do numerous “blood” runs to James Cook – this worked well.
An interview was arranged for Lou and I to meet a representative of the Human Tissue Authority, as a licence is needed for a live organ transplant. Our lovely gentleman was a Priest, his remit was to ensure I was freely giving the kidney, and for the right reason, and that no money was changing hands. How do you explain how much you love your child? How do you explain the need to make them better? I have never had such an emotional, soul-bearing and painful conversation, I left him in no doubt about my feelings. 24 hours later the licence was granted.
I was admitted 24 hours before the operation, Lou was already on the Renal Unit. Although I was anxious, it was for my daughter and not for myself.
On operation morning I went to see Lou, we had a kiss, a cuddle, and more than a few tears. Then it was off to theatre for me. If you can say an operation was good, then this was. Keyhole surgery now means less invasive, less painful operations and quicker recovery. I was kept pain free by a pain control device which I activated if I was uncomfortable. The following morning, I was out of bed, my drip and tubes were removed and – oh luxury – I had a cuppa! After a wash and “spruce-up”, I went to see Lou, found her perky and complaining bitterly because she was starving!
We were all delighted to find the gift kidney working well and already her bloods were improving.
She remained in hospital for 12 days.
I had an uncomplicated recovery and was pleased to go home on day four, but was sad to be leaving my lovely girl, despite the fact that she was looking and feeling so much better.
So, my overall thoughts about my experience….
I felt privileged to offer my daughter the chance of a better life.
Throughout the whole procedure, the entire family were well supported. We always had someone to talk to, to confide in, ask questions of.
Medicine has come such a long way. Keyhole surgery means minimal operative intervention, less discomfort and a shorter hospital stay.
Pain relief is now so well managed no-one need suffer discomfort.
Some would question removing a healthy kidney from a healthy person to give to another, which is still major surgery. I do not.
What is the alternative for the patient? Years of ill-health, years on dialysis, waiting on the transplant list for someone else to die or dying themselves?
It is now two years since our successful transplant. While Lou still has her Cystic Fibrosis and diabetes, at least she is not in renal failure, no nausea and vomiting, no profound anaemia and related tiredness, no restricted fluids or diets and no dialysis, – what more do I need to say?
And me – well, just fine. My bloods and renal function are normal. The biggest benefit for me has been my weight loss – I was overweight and needed to loose three stones pre-transplant. I went onto a healthy diet and went to the gym and took four months to lose the three stones. Admittedly, not your usual weight loss program but what an incentive!
As the saying goes, you pays your money and takes your choice – it’s up to you.
Now aged 65 outside, but feels just 37 inside, still 10 stones, and intends to stay that way,
But most importantly, Lou’s Mum.