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Second Patient view - (full conference transcript)

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Lilian Cerosoli (nee Rutherford)

David Griffen:� Lilian Rutherford works at Leicester General Infirmary as a senior staff nurse in the renal unit.� She has been a kidney patient for a very long time.� She�s assisted the Federation in the past by presenting papers in the past and by writing a patient information leaflet on sexual problems in kidney failure.� She will give us today her thoughts on kidney transplantation and indeed on the waiting list.

Lilian Rutherford: the name on the slide is Lilian Cerosoli.� My previous name was Rutherford, I have been around a long time.� This is the third name in the 31 years that I have been a kidney patient.� It�s actually 31 years today since I had my first transplant.� That kidney lasted nearly 14 years, then rejected.� I was on haemodialysis for 18 months and I�m now living on my second kidney, nearly 16 years on.�

I work full time.� When I was first transplanted I was a student nursery nurse.� After my second transplant I changed my career to become a nurse.� I think that�s going from the frying pan into the fire.� When I qualified, there were no jobs in Scotland, hence I came down to England.� I got a job in a renal unit, a busman�s holiday, and I�ve been in that for the past 12-13 years, moving from Leeds, Bradford, Coventry and I�m now in Leicester.� So I�ve been around in more ways than one.

During my own life as a transplant patient and renal patient, and latterly a nurse, I�ve come to see myself looking as in a mirror at people like Polly. Young girls where I�ve been, they are now.� And it makes me worried because in 1971, when I was first transplanted, I had just turned 17.� When I look at the waiting lists nowadays, and think of the waiting lists then, it makes me frightened.� Frightened in case, should I ever need another transplant, would I get one?� Because I don�t want to go back on to dialysis.� UK Transplant wasn�t invented when I had my first transplant.� When I phoned them yesterday, the latest they could go back was February 1972, and the waiting list for kidneys in UK and Ireland was 450.� Nowadays for the UK and Ireland it was 6,599.� What are we as patients and carers going to do about it?

All my life as a kidney patient I�ve been lobbying � lobbying MPs, lobbying consultants, telling GPs what I want. I just want to flip through the slides I�ve made today (not shown) � I�ve made a spiral.� I�m not very sure whether we�re going up or down this spiral.� As we go through the different options there have been over the years, we'll try and see where we�re going, if we are going anywhere.�

So which way is forward?� I don�t know.� Opting in, the donor card, the register, opting out, living related (no money involved), private buying (illegal at present), Government-controlled buying of cadaver organs, continuing research on animals (e.g. the pigs).

So let�s look at the pros and cons.� Opting in, the donor card and register: all this has come in since I was transplanted.� In my day it was your blood group and the good Lord looking after me.� It�s a good talking point but it hasn�t been able to supply the quantity of organs as yet.

Opting out: requires Government approval.� Many people not in agreement, and I will hold my hand up.� It might be better received if relatives were paid as an incentive.� The Government is looking at paying.� I want to hear your views on this.

Living related: good if you have someone able to donate, and you are comfortable with receiving it from them.� I had a brother who was tested for nine months.� Everything was going well.� I was unsure about receiving it.� He lives in Glasgow and is a builder, quite a rough life, and I wondered, if he gets in a fight, would the other kidney go?� But unfortunately he had a scar on one of his kidneys from a childhood illness, so now I�ve no-one to fall back on as a relative but possibly a new husband, so he might come in handy.� Fifteen years younger than me so I chose well.� For me anyway, if you have a live donor, more information is needed on the long-term quality of care of the donor, because we don�t know.� I�ve heard from one donor �My brother gets looked after very well, but they�ve forgotten about me.� So that needs to be looked into.�

Buying live donor organs � against the law at present in this country.� It�s open to abuse.� If anyone got The Mirror last week, there was an article about this poor lady who sold it just to get a roof above their heads.� Also in Coventry a couple of weeks ago a GP was actually told he couldn�t practise for six months because he had pushed patients from Coventry.� I�ve actually nursed patients from Coventry who had gone abroad and bought organs.� One never came back, once came back with infection, another one was quite well, luckily, but again it�s abusing the less fortunate.� Money soon goes and years ago I was on the Kilroy programme with a German who was wanting to buy and sell organs.� I spoke to a butcher who worked in Dewhirsts who said �I work with kidneys every day, but I wouldn�t mind selling one of mine, because it would pay my divorce bill and get me a nice holiday.�

I though, yes, blinkered.� What�s the long term effect?

Buying cadaver organs � should the Government introduce and control the buying of cadaver organs? I don�t know, there goes the gift of life, doesn�t it?� I was brought up to believe and I always felt I received the gift of life.� My first donor was a young lad from Fife in Scotland in 1971 and my second donor was a gentleman in Portsmouth.� At the time it wasn�t in to write to the donor family to thank them.� I never got that chance.� On the one hand, I don�t know whether I wanted to, on the other it�s probably good.� How much of me do they want for themselves?� Because in 1979 I had a daughter Donna who only lived two days, so would they see that as part of their grand-daughter?� Would they see that as just grateful for giving me that gift of life to give life to someone else?� And that�s another aspect I�m saying today � women on dialysis and newly transplanted want to be mothers.� I say to myself, sometimes you can�t get what you want.� If transplantation works, it�s good.� If you�re pregnant and successful, it�s good.� But there�s lots of pros and cons, as we all know with kidney patients.�

To go back to the talk, are there really enough cadaver organs to meet the demand?� Thankfully, they are doing a national audit.� For years and years we have paid these transplant co-ordinators and to be quite honest you think what are they doing?� �When I worked in Leeds, I went to St James�s, where they were praising themselves for having done 100.� But in the ten years I was in Leeds it never increased.� A hundred was their target.� We�re putting all this money in but are there really enough?� I�ll be pleased to hear the outcome to see if there are actually enough.� I�m needing this gift of life.�

Research on animal organs:� e.g. pigs � should this continue?� Animal rights groups are against this.� I�m actually for this, I would go for a pig�s organ.� OK, you might get a bit of an infection, but who knows?� Something that works is better than nothing, and with waiting lists over 6,500 I would definitely go for one of them.�

The reintroduction of elective ventilation:� The numbers at Exeter rocketed.� I feel we need to look more into non heart-beating donors.� But it�s about education and letting people know what it�s all about.

So to my conclusion.� I feel that for transplant recipients their main aim should be to live as healthy a lifestyle as possible and be compliant with medication.� I think compliant with medication is a mega thing.� I�ve actually been, in a nice way, questioned if I keep to my medication, because since I�ve been on Neoral I run low levels.� My transplant was nearly a hundred per cent perfect match this time round, and I do take my medication, I do comply, but I�m not willing to meet the trough levels that the hospital wants me to until they can prove that my figures are going off.� If you know you are feeling well, your figures don�t move, you fight.� Without the fight I don�t think I would have survived 30 years.�

Also I think the medics should work closer with Government to find ways to catch up with the growing demand for organs.� The general public and the other medics need to be educated better with regard to prevention of chronic renal failure.� Like the figures show, we should be sorting out the diabetics, people�s blood pressure.� It�s in the news every week, we�re getting more obese, becoming diabetics at a younger age, we need to be getting a handle on things.� As patients we need to be out there telling people, educating people, giving your time like you�re giving today, to get your word over.� All that�s left on the waiting list, daily dialysis � we�re not going to go forward until we can get a clearer path, because we�re just getting bogged down,�

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