Kidney-Pancreas transplantation

by Deborah Duval

Late in 1993 I learned of pancreatico/renal transplantation (where a pancreas and kidney – from the same donor – could potentially ‘cure’ the renal failure and the diabetes in a patient suffering with these two conditions). Through necessity and an inborn naturally overzealous curiosity I investigated this new source of hope. I absolutely would not let go. My wonderful renal consultant made the necessary cross-hospital inquiries and I was referred to the Royal Liverpool University Hospital for still further investigations.

The first two thirds of 1994 remain, to this day, a blurred memory of painful nights with itchy skin, constant gastric problems, weight loss, persistent anaemia and a haze of daily and time consuming medical procedures. For my part I just wanted a day off, just one day. I wanted to step out of my bleeding and itchy skin, eat and drink like a ‘normal’ person, forget my rigid drug regime. maybe go for one short run. Just 24 hours – that’s all I wanted. Even the most overworked and undervalued ‘health professional’ gets 24 hours off now and again.

In early October I was summoned to Liverpool for my double transplant. Probably the most complex day of my life in terms of my feelings. Fear, excitement and anticipation, yes, but the overriding emotion of that day was gratitude. Someone somewhere had been brave enough to enable the death of their loved one to offer me, someone they had never met, a chance to live. It is something I never, ever forget. It is one of the two most precious gifts I have ever received.

I left hospital in mid December after a traumatic stay involving time spent on the Intensive Care Unit on a ventilator, a spell on the High Dependency Unit, several return trips to the operating theatre and a short period of ‘rejection’. Many patients endure this short period of rejection during the first few weeks post-transplant, but most come through it. A really wonderful and highly competent renal team run this unit in Liverpool and my successful emergence from these set backs is due entirely to them. It was during one of the many trips to the operating theatre that I was asked at what time I had taken my morning dose of insulin. I was able to reply “I am not a diabetic – I don’t need it”.

Another rigid drug regime replaces the pre-transplant regime, essentially to suppress the body’s natural immune system. With a fully charged immune system the body will recognise organs that are not ‘self’ and reject them within days. These drugs are to be taken for life and have side affects that, in themselves, need to be addressed prior to transplantation. Especially when treating women.

My first morning home, just before Christmas, saw me getting out of bed, walking down stairs to a cooked breakfast with my husband. An extraordinarily but understandably exciting moment given that, for the first time in our married life, it had not been preceded by several hours of medical procedure! That is one of the moments when it all started to feel worth it!

My relationship with my husband did change. My illnesses had become bigger than ‘us’. An ambitious and challenging young woman emerged from the shell of renal failure. I was determined to make up for lost time and set to recapturing some of the experiences I had been denied for so long. I turned my mind to study and developing a productive life. The dynamics within our relationship changed once again and it was something we had to address. We enjoyed that first ‘real’ year together; we took our first holiday abroad for over 6 years.

The following year saw not only our surrogacy attempt fail – having children was an important issue for my husband – but the marriage itself. We parted company on good terms. The years of dealing with several chronic conditions had become the focus of our life together almost to the exclusion of anything else. Without it we were two different people pulling in different directions. Later that same year early stage renal failure was diagnosed once again. My transplanted kidney was struggling and the prognosis was not good. It was August 1997 and this time I was alone.

In February 1998 my consultant informed me that there was not enough life in my transplanted kidney to sustain adequate renal function any more. We had become very close over the years and he alone bore the brunt of my anger and frustration at this development, but still managed to bring me around to accept yet another journey through renal failure.

In May 1999 I made the trip to Liverpool to receive my second kidney transplant. A ’phone call in the middle of the night had once again brought the dream of a life free from dialysis to within my grasp. My second, and equally valuable ‘most precious gift in the world’. Now I have two families to whose extraordinary generosity and compassion I owe my life.

Deborah’s Reflection on Transplantation from a Woman’s Perspective

Before a decision is reached on the question of whether to be put forward for transplantation or not, a woman needs to be aware of the full range of available immunosuppressant drug regimes. It is my experience that the people deciding these drug regimes tend to have their own ‘favourites’ and this may not necessarily be the one that, given all the facts, his/her patient might choose for herself. To illustrate my point – I would accept a reduced feeling of ‘well-being’ in exchange for an increased feeling of satisfaction with the way I look. I do not stand alone with this opinion.

Some of us have been very lucky in our selection of consultants and doctors – I am amongst these. It is vital that you are able to develop a healthy regard for each other. However, I am aware of fellow patients who have been told, when addressing the issue of changes in their body image “Well you’re transplanted aren’t you, what more do you want?” This is completely and inexcusably unacceptable.

Personally I find the effects of prescribed steroids unacceptable (that is not to say I haven’t had to take them). A grossly inflated face, a raging appetite and excessive facial and body hair growth will impact a woman’s perception of herself and in turn affect her personality and self esteem. With adequate information and sensitive and balanced patient/consultant communication it is possible to reach mutually acceptable middle ground. We are people not text book conditions. We are all unique and deserve to have our expectations respected.

Careful attention also needs to be drawn to the inevitable change in family dynamics along the route of renal failure. A woman can enter a relationship as the major wage earner (as I did) and find, through no fault of her own, that her ability to sustain this ‘power-balance’ is wiped out in an instant when end stage renal failure is finally diagnosed. The physical side of a relationship with a partner will also be impacted and become directly relative to the patient’s physical feeling of well-being and mental state of self esteem. Conversely, when transplantation is successful it can only be of benefit in the ensuing months to be aware that a physically stronger and mentally more agile woman will emerge from renal failure with a quest to make up for lost time in every area of her life. A frightening prospect!

The issue of having children is also affected by renal failure. I know of many healthy children successfully conceived post-transplant, and indeed of many healthy children carried into early stage renal failure. I am aware, however that pregnancy during renal failure is very actively discouraged for obvious reasons (providing adequate nourishment to the foetus).

I do believe that my inability to sustain a successful pregnancy is directly attributable to years of nerve damage in diabetes followed by the battering of renal failure. This is an area of great regret for me and I believe deprived me of exploring a side of me that is quintessentially ‘female’. This then is another area a woman will need to address in the early stages of renal failure. She needs to be clear on where she stands on these issues and be made aware of what opportunities are available to her for her future.

Getting back to work is not always a viable option for a ‘transplanted woman’. The time spent in renal failure will have taken a toll on her overall state of health and the umbilical cord connecting her to the hospital will never be completely severed. Hospital visits will always constitute part of her life. Personally these visits represent my ‘walking sticks’ and my means of maintaining contact with those with whom I spent so much time as an inpatient. I choose not to relinquish them.

This article by Deborah is an extract from a fuller version she wrote for the Perceptions series on this website. Click here to read it.

To find out more about transplantation, click here .

NKF Controlled Document No. 195, Kidney-Pancreas transplantation, written 15 October 2005. Last reviewed 19 October 2009.

The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.

The National Kidney Federation is registered in England and Wales as a Company limited by guarantee (Company No 5272349)
and awarded charitable status (Charity Number 1106735).

Give as You Earn contributions No. CAF GY511.

Page created: 15 October 2005

Last updated: 29 April 2009

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