Michael’s Story – 4 days and 15 years that changed my life
This is the story of my struggle with Chronic Kidney Disease, one of a number of articles by patients at St George’s. As always your experience is likely to differ, but I hope it helps you or someone you love understand the shared elements of our battle with the disease.
Day 0 – Diagnosis & the Phoney War (20th November 2000)
I was diagnosed with Chronic Kidney Disease a few days after my second son was born. My wife had pressured me to see the GP about the purple rashes I was getting on my legs (purpura). The GP took my blood pressure and urine samples and then referred me to the St George’s Renal clinic in Kingston. After being told at the clinic I probably had Chronic Kidney Disease, I had no idea of the journey ahead. I was told I needed an urgent kidney biopsy to determine how aggressive the disease was. I delayed this a few weeks to await the birth of my son but when I eventually under-went the procedure, I was told I had IgA-Nephropathy. It was November 2000.
Of course the first thing I did when I got home was to start reading up about the disease. But what then began, as I look back, was a phoney war. I took blood pressure and statins tablets along with malodorous fish oil capsules. I lost some weight and my loss of kidney function plateaued. I gained weight and I started to loose it again. After 12 years I could see the inevitable as I reached an eGFR of 30. But I thought I still had 5 to 10 years before they finally failed. I gave it little thought and was truly ignorant of what lay ahead. I hadn’t yet been invited to the Advanced Kidney Care Clinic to educate myself.
Day 1 – Renal failure & Dialysis (3rd September 2012)
It was a chaotic and stressful summer in 2012. I was exhausted from a cocktail of work and home life issues but I sent in my 6 monthly bloods as usual, a week prior to my clinic appointment on the first Friday in September. But I received a call early on the next Tuesday from my consultant; he had just received the results of my blood tests. Already surprised by the call I had that sinking feeling when he said “You need to come into Buckland Ward immediately. Don’t drive yourself.”
That day and the next I was subjected to a battery of tests and procedures designed to restart my kidney function. The doctors assumed that I had taken something that had injured the kidney. In reality the new biopsy indicated that I had end-stage renal failure. First a groin-line was inserted to provide access for dialysis and I then had 2 hours of dialysis; the next day 3 hours and then 4 hours the subsequent day. It was all new, unexpected and a times scary. The groin line was then removed and after 5 days in Buckland I went home for a couple of days. I came back 2 days later to have a Tesio line inserted in my chest and that was my new access for dialysis.
I wanted to continue working so I decided to change to Peritoneal Dialysis (PD). Unfortunately it didn’t work well for me and after 6 months I was exhausted from a lack of sleep and insufficient dialysis. So I switched back to haemodialysis and used the Tesio line that I had kept in throughout this period. I dialysed first in Knightsbridge and Norman Tanner then moved to Colliers Wood. It was summer 2013 when I had my fistula created and later my line was removed in November 2013. I had already decided that my goal was home Haemodialysis. I also decided that I wanted to use a technique of cannulation (needling) that wasn’t used at St George’s. So I transferred to Kingston (a St Helier run site available to patients from St George’s) in September 2013 to have the single site cannulation (button-holes) created.
Day 2 – Anaemia & home dialysis (5th November 2013)
It was during this change that I missed the usual monthly blood tests. Bad news! In the intervening period my haemoglobin (red blood cell) levels had crashed to a dangerously low level. I was summoned in for 4 units of blood and thus began my fight with anaemia. Renal failure is tiring; being severely anaemic is utterly exhausting. After many more tests including a bone marrow biopsy and bloods sent to a Professor in Paris, I was diagnosed with a rare disease that meant I had developed anti-bodies to the usual medication designed to prevent anaemia. Unfortunately it was also at this time that the only alternative medicine (Hematide) was withdrawn from use in the USA due to a number or serious incident of anaphalactic shock. So I became blood transfusion dependent, having to travel in for 2-3 units every 2-8 weeks. A roller coaster ride or fatigue and emotion. What was truly amazing was that despite having over 80 units of blood over 2 years, the leukocyte-depleted blood units did not cause me to develop further antibodies that might prejudice a renal transplant.
After establishing my “button holes”, I transferred back to St George’s home therapies team in the summer of 2014. Here I completed my training and in November 2014 I began to dialyse from home. This is not for everyone, but for me it was so much easier. I could dialyse every other day which meant I had better clearances, and I was more relaxed in a home setting. I still maintained a close link with the hospital with visits for my dialysis with transfusions in the hospital.
During this time I’d explored 3 live donors but none went further.
Day 3 – “The Call” & a Transplant (24th December 2015)
It was approaching Christmas 2015 and I’d been on the transplant list for 40 months. My two daughters had written their Christmas lists and both had asked for “A kidney for Daddy”.
On December 23rd, I took my children to see a morning performance of A Christmas Carol at the local theatre. We were settled in to the performance when my phone started to vibrate. It said “number withheld”. I was always getting calls from the hospital saying this so thought it nothing special. I answered the call at 11:30am and the person at the other end said,
“Is this Michael?”
“Yes”.
“This is the renal transplant doctor here. Can I confirm a few details?”
And so began a flurry of activities. Leaving our daughters behind with their 17 year-old brother. Driving to the hospital. About a dozen blood tests including the all important cross-match to confirm suitability and by the early evening everything was set. I was the third transplant recipient that day and the operation didn’t begin until about 11pm. The operation was completed in the early hours of Christmas Eve. What a present! My two daughters had written “a new kidney for Daddy” on their Christmas list. Believe in Santa and their dreams really can come true!
Things went well surgically and thank goodness the dreaded catheter and other tubing was removed within 36 hours. Unfortunately the kidney did not work immediately. This happens in many cases. Fortunately, the “sleeping kidney” needs time to regenerate and I was continually encouraged to be positive because of biopsy results showing a sleeping kidney but good blood vessels to regenerate and “wake it up”.
The Postscript
2 weeks on, at time of writing this article, the first encouraging signs are there that the kidney is starting to work. It will be some time before I know all of complications will be left behind and my new journey begins. A world of anti-rejection medications and antibiotics. A new regime but far, far less onerous than dialysis. Thank you to my donor and his family. He has really given me the “Gift of Life”. Thank you to the staff who have been there for me throughout my treatment; skilled and wonderfully loving & caring.
