John's comments
Helen's comments
Initial news
I was living in Nottingham in the June summer when Nick became ill. Dad called me on the Wednesday evening to say Nick was in hospital and had suspected kidney failure. I immediately drove to Warrington hospital. I remember feeling a deep sense of shock, the bottom fell out of my world. I drove up on auto pilot, willing Nick to get better, to be OK
By Thursday morning they had moved Nick into intensive care and hooked him up with God knows how many pipes and drips to whirring pieces of machinery. Seeing him there was just awful - what the hell was happening to us and why? Maybe it started to sink in then - after all, only seriously ill people have to go into intensive care.
Nick was transferred to Hope Hospital that afternoon, he seemed to get better very quickly once he was in Hope on dialysis. They even let him out on the Sunday afternoon to come home for a while, although seeing him in his dressing gown and slippers bent over and slowly shuffling around the house was almost too much to bear.
Once Nick was fully stabilised and on CAPD things began to get better and on an even keel. At Christmas he looked really healthy, Mum and Dad seemed to be coping well and we were starting to talk about a living donor transplant - may be we would get through this after all.
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Peritonitis
But then in February things took a few steps back with Nicks first serious bout of peritonitis. Seeing him in pain was awful and we had to deal with the frustration of feeling completely useless and impotent. The hardest part was keeping his spirits up when we all knew how black Nick must have been feeling - you run out of small talk ridiculously quickly and there are only so many newspapers you can buy and only so much sympathy that Nick could take. Nick kept many of his feelings to himself and we all knew that he wanted to be back in his own flat surrounded by his own things eating his own food and hiding his wounds in private. We tried to make sure he had constant company from at least one of us even if this was simply nothing more than company whilst he watched TV.
There were also moments during this bout of illness which tested us as a family. The only way to get through this kind of thing is to absolutely stick together, but the frustrations sometimes overwhelmed us. The slowness at which the NHS seemed to move, the lack of information we seemed to be receiving from the doctors and nurses (even sometimes from Nick) were terribly frustrating and who else can you take these frustrations out on other than the people around you? I also felt terribly guilty at living so far away from Mum and Dad and I think we all felt guilty that we were well and Nick wasn't. Having said that there were lighter moments during all of this - Nick and I playing poker with the his Calcichew pills as chips - and the particularly good thing that came out of this was it galvanised us into action with the living donor transplant process.
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Living Donor
Mum and I were both eligible as living donors and both of us were equally stubborn about being the ones to go through the process. I thought it should be me because I was younger and fitter, the exact reasons why Mum thought it should be her. Nick (quite rightly) offered no opinion on it and his totally dispassionate perspective probably helped me to agree it would be Mum. It was a clinically logical decision for me - if Mum went first there was always me as a fall back later in life
Mum went through her tests in August and for me there was never any doubt that she would pass them. Mum is ridiculously healthy and fit and we could all see that this, together with her absolute determination that it should be her, would get her through it.
People have said to me how brave they are to be going through this, and to a certain extent I absolutely agree. On the other hand I know that for Mum its not a question of bravery - this is simply what you do for your son as a mother, in the same way that I would do as a sister for a brother.
Funnily enough, the one part of the process that nearly overwhelmed us was the frustrating time waiting for the test results to be passed between the hospital where the tests were conducted and the transplant hospital. They also move quietly - Dad and Nick could never get hold of anyone in either hospital to try to chase through the paperwork. I remember the constant stream of emails from Dad outlining his frustrating conversations with answering machines, and I think this was one of the most frustrating times for Dad, after all it was the one thing he could influence, this was his way of making things better and he seemed to be getting nowhere. I guess the lesson is that don't be surprised if you cope with the big stuff and the little things get you down.
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Peritonitis (again) and some thoughts as to how we have got through things so far
Whilst Mum was in hospital having her tests done Nick was readmitted with peritonitis (again). This was another of the "nasty" bouts with Nick in lots of pain. I also felt even more guilty and impotent than before because I had removed even farther down south to Oxford. What made it worse was that I could have actively looked for an opportunity to move back nearer Manchester and I didn't. I chose a great job opportunity down south which allowed me to be closer to all my friend, but farther away from my family and I have spent many many moments feeling very selfish and very guilty.
How I reconcile it with myself is by going home and phoning as much as I can. I will try to call Nick at least once or twice a week and we have become surprisingly good at having deep and meaningful conversations by phone. I always tell Mum and Dad whatever Nick has told me about how has feeling and at least in that way I can keep a line of communication open.
I spend a lot of time thinking about Nick and his whole illness. I am in complete admiration about how he copes with it and his unwavering determination to live his life normally . I try not to think about "why him?", "why us?" but instead try to think what we might be supposed to have learnt from all of this. It obviously made Nick even stronger in himself and also made him question how he lives his life. Maybe the lesson for us is that we should appraise the way we live out lives or re-evaluate the things we think important.
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John's comments
Initial comment
Essentially from a medical and coldly logical point of view Helen and I were bystanders. But anyone who has been through the experience we both suffered, or anyone who loves their family will understand the trauma, heartache and pain we all suffered. To explain the shock to a family who (like a lot of people) thought "It would never happen to us" is impossible. The bottom drops out of your world, and all the issues, happenings, elsewhere in the world just simply disappear. The urge to protect, withdraw and lick your wounds is overwhelming.
As Helen says above, the "why me?" question is uppermost, and in some respects illustrates the arrogant isolation by which a lot of people (including me) live their lives. However, one visit to a hospital where there are far worse examples of misfortune than your own, and where you personally observe the incredible work performed by the medical staff, in near Victorian workhouse conditions, soon provides a sense of perspective. If you live in the UK and ever wonder about the necessity of increasing the funding of the health service, pay a visit to a city hospital. You will also understand what the phrase "crumbling infrastructure" means. Any politician, of whatever colour, that says that "the health service is safe in our hands" should be ashamed of the current situation.
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The Onset
Nick was admitted to hospital on the day before Ann and I were due to go to Italy for a holiday. The recollections I have of that time are shock and logistics. (There was also the dim realisation that if Nick had been admitted to hospital one day later Ann and I would have been out of the country, and that doesn’t bear thinking about). Each day that Nick was in hospital was totally, totally dominated by the visit to him and subsequent phone calls to, and calls from, colleagues, friends and relations. Explaining dreadful events and subsequent progress reports can become a full time job, and trying to ensure that I provided a balanced view following my visits was difficult. I will never forget the consideration, concern and shock shown by all our contacts.
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Dialysis
Once the initial "coming to terms" was over, Nick faced the dialysis type decision. He was advised and chose CAPD in that he felt it gave him more control over his environment. It originally appeared that haemodialysis would require attending a renal unit three times a week which Nick thought would take too many evenings out of his life. This requirement could have been "stretched" by supplying him with his own unit for home use (even though he lives alone) but he also disliked the "up and down" or "peaks and troughs" feelings that occur with haemo, so CAPD it was.
He also tried the overnight CAPD dialysis but he found this uncomfortable, so four times daily suited him best.
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Lifestyle
In all these decisions Nick obviously had to make far reaching lifestyle decisions (wonderfully backed up and assisted by the Hope hospital renal unit nurses) and he showed absolute confidence in overcoming and defeating any obstacles. Not once have I heard him despair. All doubts and worries seemed to be set aside and each day set him nearer to the goal of restarting his life. His iron will to carry on as normal was inspiring. This was evident by his determination to keep following his football team (he and I attended their opening match of the season only four days after his Tenckhoff tube operation), and also (as detailed in his section) the number of places that Nick dialysed. He had no intention of not carrying on in as normal a lifestyle as possible. .
The day Nick returned to work, almost two months to the day since the emergency hospital admission, was a red letter day in that it marked a giant step towards normality.
The individual steps to the transplant were absorbing and exciting, at least the family was doing something, and we all had a common aim. The selflessness of Ann and Helen (and their willingness (even rivalry) to be a donor) was humbling. Nick is lucky to have such a Mother and Sister.
Times that were hard to bear were the peritonitis episodes. Because of his condition we couldn't even buy him a box of chocolates to cheer him up. We were all so helpless and could do absolutely nothing to help or assist him. During the fourth bout there was some concern that the Tenckhoff tube harboured infection and might have to be removed and exchanged or even just permanently removed. This would have been a major development and obviously radically changed Nick's life.
My abiding memory of this episode in Nick's (and the family's) life is the dialysis episode at the Open Golf Championship at Royal Lytham St Annes. When Nick said he was attending I said that dialysis would be no problem because he could use one of the various St John's tents around the course.
"No way" said Nick," I'll miss the golf if I'm in a tent", so he sat in the stand and just did it in the open.
Go it Son.
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