Ann Williams
Ann's Views
Ann's comments and story
The Onset - July 2000
I knew something was wrong with Nick. He was coughing, suffering difficulty breathing and looking extremely unwell. It was difficult to be too pushy, you cannot treat a grown man of 29 as a child, and I had to rely on him seeking treatment. He looked dreadful when I collected him from his abbreviated Golf trip.
Initially he stayed with us as opposed to his own home. I arranged a visit to our GP. It was inconclusive, Nick was given steroids to help with his breathing. After 2 - 3 days Nick's legs began to swell but we put it down to the steroids. Nick then seemed to recover and seemed better so I took him back to his Warrington home.
I had a phone call on the following Wednesday from my husband saying that I should get over to Warrington because Nick had phoned and was obviously very ill. An emergency appointment was arranged with his doctor who immediately sent him to Warrington Hospital. I accompanied him and had to relay the information that he had suffered kidney failure to my husband and also my daughter (who immediately set off for Warrington from her (at that time) home in Nottingham).
The repercussions began to set in the following day when a consultant explained what had happened. For specialist treatment purposes Nick was transferred to the Renal ward at Hope Hospital, Manchester. The doctors there were very experienced and helpful.
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The Initial Treatment - August 2000
We spent most of August between our home and Hope Hospital. My initial reaction was why? - why us? - could we have done anything to prevent this? No answers. We just had to get on with coping.
Initially the Hope doctors concentrated on Nick's fluid balance, he had suffered a build up that had caused the ankle swellings and (unknown to the family) pericarditis. Treating the latter required frequent haemodialysis sessions and initially these would leave Nick with headaches and a sense of light headedness. Following the initial sessions Nick was allowed home and of course this gave his friends the opportunity to visit and wish him well. In some respects this was an additional burden, returning from a session feeling pretty low was not the best preparation for chatting with friends. On the other hand, they had made the effort . . .
Eventually Nick was offered a choice of the next stage of coping with the problem, a continuation with haemodialysis or Continual Ambulatory Peritoneal Dialysis (home treatment, but necessitating a 4 times daily regime).
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CAPD
This seemed to be the best option for Nick and allowed him to get on with his life - (work, golf and football!). He coped very well and we became used to Nick arriving with all the necessary paraphernalia. It irked him but he accepted it and I/we helped out where possible. I'm sure I couldn't have coped as well as he did and I have enormous admiration for the way he refused to let it govern his life. As an example of his determination to continue with his "normal" activities, 4 days after the insertion of the Tenckhoff tube in his abdomen, he attended a football match. (one of the proudest moments in my husband's life) and Nick now plays football twice a week and, of course, golf with his friends.
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Peritonitis
We had read that this was a complication and tricky side effect of CAPD, although the first attack didn't seem too bad. Nick told us after the event, and so we weren't too bothered about it. However the subsequent attacks were much harder to cope with - seeing your son in extreme pain and not being able to do anything to help is extremely hard. It also introduced an element of "living on the edge", never knowing when a phone call would happen necessitating a swift pick up and dash to the hospital for immediate antibiotic treatment.
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The Big Decision - April 2001
When we heard about living donor transplants, I wanted to be the donor - any parent would do anything for their child. All the family were prepared to be donors but my husband was eliminated almost immediately which left me and my daughter Helen. When Helen and I were both found to be suitable, there was much soul-searching as to which one of us should do it. As a mother, I didn't want my daughter to have to go through an operation and the subsequent pain and recovery if I could do it - again, you simply want to protect your children. She is very close to Nick and really wanted to be the donor but we eventually decided that it would be me. I am a Primary School teacher but have been doing supply work for the past 3 years having 'semi-retired'. Having to give up work for 3 months wasn't an issue. My other leisure activities - keep fit, badminton and gymnastics coaching - could take a back seat. I was - and still am - pretty fit for my age, so the decision was made. The most frustrating thing was the time it took from first seeing the transplant co-ordinator at Hope (in February) to setting a date for the tests (August) - 6 months.
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The Donor Tests - August 13th 2001
The arrangements for the tests were explained in one of the consultations I had with the transplant co-ordination team. Following satisfactory tests I would then be referred to the transplant unit at Manchester Royal Infirmary who would actually perform the operation.
Therefore I entered Hope MIU (Medical Investigation Unit) for all the required tests, I was nervous (naturally) but none of the tests were unbearable. The most physically demanding was the exercise ECG, most were non-invasive and as I don't mind needles, providing blood (quite a lot actually!) was also OK. I was told on the Monday afternoon of week long tests that Nick was also in the hospital with his fourth bout of peritonitis so I spent any free time going downstairs to try and keep his spirits up.
During the week, the "immediate test results" - ultra sound, exercise, etc. - looked good and that was heartening. At the end of the week I was told that it would be another 6 weeks before all the results were collated and a decision could be made. The weeks really dragged by and we heard nothing and really had to push all the way, phoning, reminding people that it had been a number of weeks since we had last heard anything. Again this was hard. Why do things take so long? I wanted to get moving and it sounded as though no one else had a sense of urgency. An added frustration was that because the tests were performed in one hospital and the transplant would take place at another it was difficult to establish who to chase - the interpreter of the results or receiver.
In the end you resign yourself to the fact that in the UK the NHS goes at its own speed and there is little that you can do about it.
When Nick was first ill he was admitted as an emergency and received immediate treatment. During his bouts of peritonitis he could go to Hope Hospital and they would immediately admit and treat him. However because he was not in dire need of a transplant there was no rush to get my test results collated and we just had to wait.
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The decision is Made - Oct 5 2001
My first meeting with Mr Riad at Manchester Royal Infirmary (the transplant surgeon) started with the question "Do you really want to do this?".
"He's my son and I would do anything to give him a chance of a better life".
He then began to give me a worst case scenario!
Then he explained the procedure and I found him to be someone who inspired confidence. I could put myself in his hands and know he would do his very best to make this operation work. The date was set. On a trivial personal lifestyle note - I knew my badminton friends would manage to fill my place until I can get back - which I have every intention of so doing. Keep Fit had to be stopped as there was no one prepared to take over but a long time colleague agreed to carry on my gymnastics class until I am back in spring 2002.
Most peoples reaction on being told I would be be out of action for 3 months was "Oh aren't you brave". I didn't feel brave As I said I would do anything for my son. I have enormous admiration for then way he has coped and I'm sure I couldn't have done it., By giving him my kidney my hope was to give him his life back. I was, and still am, overwhelmed by the supportive feelings expressed by everyone with whom I have contact.
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Recovery and afterwards.
It was very comforting to have the whole family together, talking in Nick's room, before I was taken to surgery at 8:30 a.m. I must admit I don't remember much about the rest of the day! I was prepared for the post-operative pain but I wasn't prepared for the discomfort caused by the things that were supposed to be making me feel better. The morphine made me feel very sick and the oxygen dried my mouth and throat so they felt like the Sahara Desert. However, as soon as both were withdrawn, I began to feel a lot better. I was made to get out of bed on the day after the operation and I must admit it wasn't as bad as I'd expected. By the evening I was feeling rather the worse for wear and was glad to get to bed. The next day I made it to Nick's room and from then on things gradually got easier. I cannot say I was in "pain", rather discomfort - moving positions was the most awkward manoeuvre, but there are ways and means!
I was discharged the following Monday and Helen took a week's holiday to be at home and look after me. She was terrific and made sure I didn't do anything remotely energetic! Nick was still in M.R.I. so we had a couple of visits during the week. I was quite able to get in and out of the car and walk along the corridor and by the end of the week felt ready to tackle a longer walk. John and I walked to and from the local shops and after that I felt able to set off on my own. When Nick came home and Helen had returned to Oxford, I was able to get around with very little discomfort. I did take things slowly as instructed and rested after each task. There was too much at stake to ignore the medical advice and try and do too much at first.
Since then I have been very fortunate in that I have been able to do MOST things as if nothing has happened. I really don't feel as if I've had a major operation. I have had the usual 6-week check from Mr Riad and he is pleased that I am well on the way to full fitness. As he said, once I had had my operation, that was the end; but for Nick it was just the beginning. Nick has had several set-backs during the past 6 weeks and I must admit that at times I have felt guilty that I have felt so well and he has been in pain and feeling low. After all, my kidney was supposed to make him feel well and it was hard to see him obviously NOT well.
Thankfully, throughout all the ups and downs, the kidney HAS worked and now (beginning of January) it does seem that at last Nick's problems are behind him and he is going from strength to strength. I still get the odd twinge or two-usually when I least expect it-doing something completely innocuous---but I'm sure that won't last for too much longer. I don't intend to rush back to Keep Fit and Badminton either - much as I would like to. I'll wait---as I was told to! Mr Riad said "After 3 months you won't know you've had anything done". I hope so!
I don't know how typical my experience has been. Have I been extremely lucky in that I have recovered so quickly? I was very fit before the operation and don't know how much that contributed. Other donors may have had different experiences, but I hope my account will be of help to anyone finding themselves in the same position as I was. Would I do it again? Obviously I can't, but yes, I would; I hope I've made a difference to Nick's quality of life and everything I went through was worth that.
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