A website relating to a "living donor" kidney transplant from Mother to Son.
Background
The Williams family is just an ordinary family of Mum, Dad, Brother and Sister.
But during the past 2 years it has been subjected to the extraordinary experience of kidney failure and subsequent transplant.
At the beginning of 2000 life seemed pretty good - Nick and Helen (son and daughter) were carving out good careers for themselves and Mum and Dad (Ann and John) were typical proud and happy parents. But then in June 2000 Nick became ill and without any prior warning or any previous history of such a complaint, suffered kidney failure.
Following a period of stabilisation at Hope Hospital, Manchester, Nick embarked on the dialysis stage of kidney failure and had a Tenckhoff tube inserted which permitted him to dialyse via CAPD (Continuous Ambulatory Peritoneal Dialysis). Subsequently, following careful consideration Nick registered for a kidney transplant and the family decided to undertake the tests for a living kidney transplant. The outcome of the tests were that Nick's mother, Ann, became the donor.
So this site relates the experience of this family from Nick's point of view, his Mother's point of view, and includes comments from the other two members of the family, Helen, his sister and John, his father.
It was obviously a life changing event for Nick, but also for the rest of the family and that is why this is not just a chronicle of Nick's two years but also the story of the rest of the family.
Collectively, we all hope it informs and, if relevant, helps.
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June 2000
Nick is a golf fanatic and in June 2000 attended the Open Golf Championship in Scotland. During the week Nick felt so ill with chest pains and shortness of breath that he returned home. After being diagnosed with Asthma and being given appropriate (but wrong) treatment Nick returned to work.
Subsequently Nick felt so ill that he had to seek an urgent appointment with his doctor and was sent to his local hospital.
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Diagnosis
The local hospital diagnosed renal failure and indicated that Nick required admittance to a specialist renal unit which in Nick's case could be Liverpool or Manchester. Because of the proximity to Nick's family home, the Hope Manchester hospital was selected and a long association started. Initially Hope concentrated on haemodialysis and stabilising Nick's condition. After the dreadful experience of Nick's sudden illness, there was an incredible sense within the family that a "system" had taken over and that Nick's condition was something the system knew how to deal with and something it could deal with. The staff at Hope hospital have this family's eternal gratitude for the stabilisation of Nick's condition.
Truly - hope from Hope
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Peritoneal Dialysis
Eventually Peritoneal Dialysis was offered as the best option for Nick as a lifestyle that would give him the greatest element of freedom and an operation to insert a Tenckhoff tube was performed in August 2000. (As an example of Nick's determination to restart normal life, 4 days later Nick attended the opening match of his football team's season!).
The routine of four daily half hour dialysis episodes quickly became the norm and Nick settled to the routine (but then, what is the alternative?)
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Peritonitis
One of the down sides to CAPD (Continuous Ambulatory Peritoneal Dialysis) is infection of the peritoneal cavity via the Tenckhoff tube. Nick has suffered four attacks of peritonitis. Two of these attacks were extremely painful and caused great concern and considerable periods of work absence. At their worst they can require the tube to be extracted, but Nick didn't have to go through this (and the subsequent change to haemodialysis)
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Possible Kidney Transplant
The advice Nick was receiving from the Hope specialist Renal Unit was that a transplant was the best option for him. Soon he was registered, after being passed as suitable, for a cadaveric transplant.
A lot of family discussion centred on a living transplant and finally Nick agreed to it. Initial consultation with Hope hospital indicated that the tests could take place there and subsequently the actual operation would take pace at Manchester Royal Infirmary (the regional centre for the North West of England)
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Transplant Tests
Eventually Ann and Helen (Mum and Daughter) were judged as suitable candidates (John (Dad) was eliminated early in the tests.) The view that eventually prevailed was that minimal as the risks are, they are better undertaken by someone who is passed the age of childbirth rather than someone who is yet to undertake that adventure. Therefore Ann was the successful volunteer.
The tests took a week and were not particularly onerous being concerned with the general status of the candidate health, and, that being satisfactory, the function of the kidneys. Ann passed both of these elements with flying colours.
The biggest "drag" associated with the tests was the "black hole" which followed the verbal assurance that the tests had been successful but were followed by the apparent lack of any visible progress. This involved significant amounts of time chasing supposedly significant people or pieces of paper, but whether this had any effect is open to question.
Subsequently, for whatever reason, the operation was scheduled for early November 2001
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November 2001
On Monday 12th November 2001 Ann and Nick entered Manchester Royal Infirmary Renal Transplant Unit. Nick was given a separate room, Ann was admitted to an open, but small ward. The immediate impression was the higher number of staff compared to a general ward and the immediate sense of purpose. These were specialist purposeful people with an apparent single aim - transplanting kidneys. This is very different to the more varied duties of the type of renal ward encountered previously. The aim seems to be In, Operate and Out, rather than the broader aim of "lets see what's wrong and then devise a treatment for it".
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The Operation
The operation day (13 November 2001) was almost routine (and presumably very routine to the staff). The donor preceded the recipient into the operating theatre by about two hours (Ann at 8:30, Nick at 10:30). It was strange for the bystanders (Helen and John) to joke with Nick while his mother was being operated on. But when Nick was taken to surgery a sense of realism set in.
By 1:30 Ann was back on the ward and just about starting to recover. Shortly before Nick reappeared at 3:30 an anxious Helen and John were told by the operating team that it had been a "standard operation" and there was no need to appear so worried and tense (easier said than done).
Eventually the day ended with the initial blood tests indicating that the transplanted kidney was working.
Finally a lot of emails and phone calls were made to waiting family and friends.
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Recovery
Ann's recovery was swift and straight forward. Within 48 hours she had gently walked along the ward to Nick's room and sat with him. A wonderful sight for the family album. Each day she became stronger and stronger and within a week was home, taking things easy but in familiar surroundings. The words of the transplant co-ordinator seem true "Within 3 months you will have forgotten you did this!"
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Complications
Nick's recovery was obviously more complex and, to a certain extent, ongoing. All the immediate measurements were satisfactory and within the limits and tolerances monitored by the transplant team. At about the fourth day after the operation the signs were evident that a period of rejection had commenced and this was treated with a three day course of steroid treatment. This was a not unexpected development and the surgical staff were not unduly concerned. It happened, it was diagnosed, it was treated - it was as mundane as that.
The physical effect on Nick was more unexpected and caused more concern. The more so because it is not something that other people's accounts dwell on.
After the initial post operative recovery Nick experienced severe abdominal pain and discomfort. This was never ignored by the hospital staff, various ultrasound scans were done but no obvious physical cause was discovered. The pain and discomfort prevented Nick from walking any distance, and when he did he walked in a bent, cramped style that looked most painful. This lasted for 4 or 5 weeks and was very disconcerting, all the kidney signs and diagnostics satisfied the hospital criteria, but Nick was not as well (in a physical sense) as prior to the operation. The expert advice was that this was probably due to nerves and muscles knitting together. Nick was convinced that the primary cause of the pain was the stent which was inserted as part of the transplant and not due to be removed (together with the Tenckhoff tube) until late January 2002 (10 - 12 weeks after the operation).
The climax to Nick's post operative trauma arrived in December, 5 weeks after the transplant. Nick's pain was so great that he had to be admitted back to hospital where eventually a re-occurrence of peritonitis was diagnosed. Immediately the Tenckhoff dialysis tube was removed (and the stent) and a course of STRONG antibiotics prescribed. This produced a cure, and, the net effect was that Nick was tube free (and operationally free) 6 to 8 weeks earlier than anticipated.
Obviously an event as significant as a living donor transplant between family members is stressful time and it is difficult to draw general conclusions that are valid for anyone else in the same situation or to provide a clear and concise summary of the period. That is why there are individual family contributions.
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Contact
If any of these topics are of interest and you wish to contact Nick or any other family member then mail will be welcomed.
John Williams
November 2001
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