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Kaye Noone
Diagnosed with polycystic kidney disease in both kidneys when I was 13, my family and I were always aware that a kidney transplant would be, ultimately, inevitable. I spent my adolescence in relatively good health, with only a few hospital admissions for stubborn kidney infections, and surgery to investigate what was going on, meaning that I got through my GCSEs, A Levels, English degree, Masters in Literature and teacher training degree mostly unscathed!
I began teaching English at Egglescliffe School in 2006, bought my home in Darlington and met my husband, Mark, in 2007. We married in an incredible ceremony last year, and have recently celebrated our first wedding anniversary in style! Our first year of marriage, however, has brought more challenges to us than the expected ‘honeymoon period’ of married bliss!
On New Year’s Day 2010 we had travelled back from a wet, rainy, miserable short break in the Algarve. The misery was partly due to the weather and partly due to me feeling very under it! In addition to that, accident-prone Mark had damaged his foot playing football on Christmas Eve! That night I was admitted to hospital with loin pain and high fever, and to cut a very long story short, I was discharged having lost three months of 2010 and my left kidney. As the right kidney didn’t want to work very well either, I was put on haemodialysis and eventually moved to the Darlington Unit to do the twilight session, meaning I can still work full time. Four of my family were tested, and my wonderful Dad turned out to be the best match.
Happy New Year
Happy New Year
So, 2011 is drawing to a close and I haven’t updated my blog since May! Oops! I could say that the reason for this is that there hasn’t been much to report, but things have happened since May, it’s just been an incredibly busy six months.
My last blog reported that the date for surgery was March, but it wasn’t, it was actually May, and even then it wasn’t! Allow me to explain. There’s not much explaining to do about the March/May thing, that was just a typo. Sorry about that.
I was admitted to the Freeman in May, and enjoyed the fasting until about 1pm on the day of surgery when, unfortunately, Mr. Rix came to inform me that an emergency liver transplant needed performing and the operating theatre was required. I was very disappointed at the time, but on reflection, I soon realised that a small inconvenience for me, was a life saving procedure for another person. They could have my operating theatre! Back to school I went.
The operation then took place on July 4th, and all went well. The ureter was repaired, a new stent inserted and my one remaining native kidney removed. This was a huge operation which left me with two very impressive scars and 76 clips. The Facebook picture of my abdomen a week after surgery went down well with my poor friends! School broke up four weeks later, and two of my dearest colleagues were leaving, so, despite being in quite a lot of pain and being accompanied by my catheter (nice) I attended the leaving celebrations, and was so glad I had. Four weeks at home with ‘Homes under the Hammer’ is enough to make anyone stir crazy!
I had to wear the catheter for six weeks, which does become a pretty unpleasant experience after some time, particularly when it becomes blocked. One night I experienced the worst pain I have felt so far in this whole saga, and Mark whisked me off to A&E at James Cook. It turned out that I had a hole in my bladder due to the surgery, and it was leaking because of a blocked catheter. It was soon solved and didn’t reoccur, but I will not forget that night quickly – it really was agonising. And I think of myself as being pretty hard!
The legendary Dr. Paterson retired at the end of July, which was a sad moment, as he has been the most understanding and outstanding consultant throughout the development of my disease and treatment. He has been succeeded by the lovely Dr. Murray, who put my neck line in the day I was told to come into the hospital for dialysis for the first time. I now only attend clinic every six weeks, as I passed the one year milestone on September 1st.
Mark and I have been on two holidays since the surgery. We did a France road trip in August and just returned from a very hot Tenerife on Christmas Eve. I was very lucky and only dialysed for six months, however I can still appreciate the immense freedom and pleasure that a successful transplant affords you – thanks a million Dad!
Long Time No Blog!
It’s been a very long time since my last update, but I suppose I should see that as a good thing...no news is good news! However, it hasn’t all been plain sailing since the transplant in September, as it was discovered, due to high creatinine levels, that there is a blockage in the ureter (connecting the new kidney to the bladder). As well as this, I have been plagued by infections in my one remaining native kidney which, at one point, I was ready to take the kitchen scissors to.
I had a long, frustrating wait from the Freeman Hospital, who needed to make sure themselves that the further surgery was necessary. I saw the surgeon in March who did some investigations and scans under general anaesthetic, and decided that yes, I do need the ureter repaired and the diseased kidney removed. After another long wait I received a letter from the Freeman last Friday that gave me the date of...March 22nd! This Sunday!
So, having bought a thousand new pairs of gorgeous pyjamas, as is my habit, I am heading back to Ward 6a and their lovely nurses on Sunday, with the surgery taking place on Monday. I am so pleased that the source of infection will be removed and I should be all sorted with no more problems. The transplant has been a brilliant success, though, and I wouldn’t want to worry anyone with these further issues...I’m sure it’s rare! In fact the follow-up from the transplant has been very straightforward – I’m now on just 5mg of Prednisolone (the steroid) and 6mg of Tacrolimus a day, and see the Consultant just once a month.
I’ll keep readers updated from the hospital and let you all know how this next stage goes.
Too Good To Be True
The last month hasn’t been as smooth as I had bragged about in my last update unfortunately...pride comes before a fall? I was discharged from hospital for the second time in a month yesterday, as following the removal of the stent after eight weeks complications have occurred.
It appears that the ureter has got somehow blocked or twisted during transplant surgery, and it is not draining into the bladder as it should be, meaning that the new kidney is becoming dilated and kidney function decreasing. When I went to the hospital for blood tests the doctors weren’t pleased with my creatinine level, so I was admitted around a month ago and a nephrostogram was done to have a look at the ‘plumbing’. This was done in a radiography room with an ultrasound and x-ray, where they decided to insert a nephrostomy tube directly into the transplant to drain the kidney. This meant that I had to stay in hospital and wear a nephrostomy bag that, frustratingly, suffered from serial leakage at the most inconvenient times. (Such as down in the cafe with my family where I, basically, weed myself...)
The kidney shrunk back and all seemed much better, so I was discharged a week later and the nephrostomy tube removed. However...I felt very ‘infected’ three days later and returned to the hospital, where I was luckily allowed to go home with antibiotics, and asked to return last Thursday morning for a blood test. Mark and I were due to visit our brother and sister in law in Bristol this weekend, as they have just had a baby, so I was all packed, dressed up and ready to go. However, blood tests were poor again and the docs wouldn’t let me leave. In fact, they’d had a bed booked on the ward before I’d even got there, so I obviously had no chance of escaping!
Five days later I am now at home with another nephrostomy tube and a supply of catheter bags (AKA Overnight Glamour Bags) and I have to go back to James Cook on Friday to have the stent reinserted via the tube then the tube removed. The long term plan, as a stent cannot stay in permanently, is more surgery. I will need to return to the Freeman in Newcastle in a few weeks to have the ureter detached and repaired, and at the same time they are going to remove my old kidney to prevent further infection. Although the thought of more surgery and a longer time off work doesn’t excite me, if they do both these things at the same time all will be over and I will be fixed!
In other news, I met Emma Collins, North East Fundraiser from Kidney Research UK a few weeks ago, and we had a great chat over coffee and muffins about fundraising opportunities and events in the North East. The chat really got my enthusiasm and imagination going, and I am very much looking forward to taking part in lots of events over the coming year, starting with selling raffle tickets at the Freeman and perhaps culminating in a glamorous Charity Ball!
Fundraise Online!
