Almost everyone knows of someone dealing with kidney failure these days. It’s a condition more prevalent today than at any time in the past; due, perversely, to our increased ability to treat other conditions that a few decades ago determined an early death. High blood pressure, diabetes, kidney stones, and Lupus, along with a host of inherited conditions have all become ‘treatable’, and people can live a reasonably normal life around them. However, it is their ‘treatability’ that is now part of the reason that the diagnosis of renal (kidney) failure is on the increase. Renal failure is presenting itself as a common consequence of a life already weakened by one of these treatable conditions. In my case it was diabetes.
From the initial diagnosis of early stage renal failure, a woman has ‘special needs’ - they stand independent of the equally important, but different, needs of say, male patients or children or the elderly. I think it is important that the woman dealing with this shattering diagnosis and those family and friends in close contact with her, are made aware of some of the changes she will need to make in her life, and understand the enormous impact renal failure will have on her - emotionally, physically and practically.
It is easiest for me to tell you about some of these needs by telling you a little about my own journey through, first, diabetes and then renal failure.
As a young child I enjoyed a happy and healthy home environment in Cornwall when, at the age of 10, I began quite suddenly to acquire a raging thirst and it became obvious that I was off colour and loosing weight. Diabetes was diagnosed and after a brief spell in hospital I was sent home to come to terms with what, compared to the life of today’s young diabetic child, was an outrageously rigid medical routine which included a diet totally free of sugar. Children at school were told to watch out for me and report to a teacher if they saw that I was acting ‘strange’ (experiencing a ‘hypo’ - hypoglycaemic attack). Cannon fodder for the bully element - all schools have them. Fortunately good friends and a sound teacher base saw me through those early years and I competed in cross country running events representing my school and in my final year, was elected head girl.
A predictably rebellious few college years followed - the years my parents awarded me control of my own medical needs and care. I elected not to drink alcohol or to smoke, was never tempted by ‘recreational drugs’ and enjoyed boyfriends - although it has to be said I ‘drifted’ somewhat on the dietary restrictions. I also chose to keep my condition very much to myself. It somehow felt ‘unclean’. I can’t explain. I continued to run.
My 20s were spent in London and it was here that the first manifestations of diabetic autonomic neuropathy (nerve damage) were identified. It started with my eyes. Diabetes can cause damage to many of the nerve endings in the body. This damage can remain dormant for up to 15 years but catches up with most people with diabetes at some point - not all will suffer in the same way and some people get away with very mild forms of this nerve damage. If a body is a ‘building’ then diabetic autonomic neuropathy is an insidious form of dry rot in the substructure gradually and systematically eroding the foundations.
The vessels at the back of my eyes began to bleed into my eye and I began to ‘see’ floaters (like clots of thin black thread in my line of vision) These were only visible to me as I looked out - they were not visible from the ’outside’. The outer tubing of the vessels was no longer firm enough to prevent the blood seeping into my eyes. These ‘bleeds’ had to be ‘sealed’ by laser beam to halt the bleeding. The treatment is extremely uncomfortable but successful in combating this condition and not too invasive given that most patients will only require a few sessions while the bleeding remains ‘active’. However this is an aggressive treatment and does result, long term, in diminished field of vision. My night and peripheral vision is affected to this day.
The nerve sensation in my feet also disappeared. My balance was affected and running became a problem but I continued.
I married in 1987 and by 1989 my husband and I were becoming concerned that I had not managed to conceive. I was 29. He was checked out and given the all clear. The ‘fault’ clearly lay with me.
It was during gynaecological investigations that blood and protein were discovered in my urine. This is usually a clear indication that the kidneys are malfunctioning. I was referred to a consultant nephrologist (kidney specialist) who explained that I had early stage renal failure secondary to diabetes. My feelings were mixed - I felt relief that there was, at least, an identifiable reason for our inability to conceive; a morbid curiosity at the myriad of bodily functions this condition appeared to affect and fear and trepidation at what the future may hold for me. We had only wanted to know why we were having no luck in our quest to have a baby.
By 1992 we had been accepted on a surrogacy program at Bourn Hall in Cambridge which, all being well, would see my sister carry our babies through a full healthy pregnancy. It was on the return trip on 27 August from Bourn Hall, having successfully produced and fertilised three of my own eggs to be frozen from that point for 6 months (by law in surrogacy arrangements), that I felt the full impact of the earlier diagnosis of renal failure. I needed to be admitted to hospital.. My condition had gradually deteriorated. The body can appear to manage remarkably well with quite dramatically diminished renal function but you are left in little doubt when end stage renal failure finally arrives. I was almost constantly tired and fluid was not clearing from my body ‘naturally’ which lead to oedemic (swollen with water) legs. The nerve endings in my stomach became damaged and vomiting became part of my day. It was time to select a form of dialysis.
Renal dialysis can be performed by one of two methods - the third ‘normal renal function’ was no longer an option for me. Any woman faced with the choice of dialysing by either ‘CAPD’ (Continuous Ambulatory Peritoneal Dialysis) or haemodialysis (blood cleansing machine) needs to know how each of these will affect her life. They will both affect it in entirely different ways. It is not an easy decision.
CAPD requires a permanent catheter to be implanted through the wall of the stomach into the peritoneum (a porous bag containing the guts, liver, stomach and spleen). Four times every day - without a break - a bag of warmed glucose fluid is gently drained through this catheter into the peritoneum and by a process of osmosis over the gap between ‘exchanges’ this solution, now sitting inside the peritoneum, draws the impurities present outside the peritoneum into the fluid. This ‘dirty’ fluid is then drained out, a new bag of warmed fluid drained in and the site then sealed off until the next ‘exchange’.
A woman needs to know that she will always have a hugely distended stomach and will have to come to terms with the permanence of a plastic catheter dangling from her body. It is not a pretty sight and I would venture to say not an ideal option for a woman in a new relationship. I chose this method because I was in a stable marriage where I believed this change in my appearance would not matter. I had not taken into consideration the huge impact it would have on my perception of myself and in turn the affect it would have on my personality.
It must be said that many women manage successfully with this method of dialysis, and for those who do not manage there is always the option of changing to haemodialysis.
I commenced CAPD in February 1993 and spent the next 18 months dealing with an overwhelming barrage of medical conditions. Not least of these was an extreme form of ‘renal itch’ (where ‘clots’ of phosphate, unable to be flushed away ‘naturally’ make their way to the surface of the skin and break out, in the most extreme form, into bleeding lumps) exacerbated by the nerve damage caused by my diabetes. Nerve damage to the stomach also led to extreme gastric upset and I became anaemic. I was unable to work and the vital and energetic young woman of only a few years prior to this diagnosis had disappeared. My illness became bigger than my marriage. My husband went to great lengths to make me as comfortable as possible, but he clearly mourned the loss of the woman he had married. We were a team and we batted on.
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. My resolve was wearing thin. I have since read a book written by Professor Stewart Cameron ‘Kidney Failure - the Facts’. In it he says ‘Every patient who starts treatment for end stage kidney failure needs to know that the option exists, if life becomes intolerable, of quietly withdrawing from the treatment and waiting for the inevitable consequences.’ (p175) I wish I had been told that before now; I might then not have felt so guilty about making that decision myself. I never reached my self determined ‘dead-line’ - it was to be the end of that year. An extremely physically weakened body, without doubt, affects that person’s mental ability to rationalise in the ‘when is enough, enough?’ debate.
It goes without saying that not every patient in end stage renal failure will suffer these particular symptoms to this extreme degree. Many patients manage, somehow, to maintain a reasonable level of ‘normality’ in their life; some continue to work and some, for whatever reason, choose not to wait for that magical moment when the hospital phones to call them in for their transplant. It has been my observation that every patient dealing with renal failure (sometimes alongside other equally debilitating conditions) perceives their condition slightly differently from the next patient. We will all probably nominate a different facet of the illness as being the ‘bane of our life’.
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. We decided to opt for haemodialysis rather than CAPD as my means to dialyse. A left wrist fistula was formed in my arm (a main artery is joined to a vein to strengthen the vein in order to provide an access point for the haemodialysis needles).
Haemodialysis is the method of dialysing with which most people can readily identify ‘being in kidney failure’. It involves being attached, usually three times a week (which at best provides only 15% of what is deemed ‘normal’ kidney function), to a dialysis machine via the patient’s access point (fistula). Needles are inserted into the fistula and the blood passed through the machine several times to be ‘cleansed’ of the toxins that patients in renal failure are unable to remove naturally. We patients must adhere to a strict diet avoiding the dangerous ‘salts’ - most notably potassium. The other function of the dialysis machine is to remove the bulk of the fluid the patient drinks between dialysis sessions. Again a function a patient in renal failure is unable to perform naturally. Urine output drops dramatically - to the level of, in my case, about an egg cup full a day. Hence the reason for very strict fluid restriction.
Haemodialysis suited my body and my lifestyle much better than CAPD had and I continued to maintain a ‘life’ outside of the hospital. That said my hospital life, by design, eclipsed vast areas of my personal life. I began to take an active interest in educating interested parties in what it means to be in renal failure and began to talk to groups of medical students on renal related courses. Friends and family were once again a source of great strength for me. I have a little white West Highland terrier called Hamish and he became a good listener and now knows all there is to know about renal failure! I tried to keep reasonably fit and awaited the day I would be lucky enough to receive my next transplant.
I elected to move to Hampshire - a very difficult decision to make given the relationship I had with the people in my renal unit in Cornwall. I was to dialyse under the care of St Mary’s Hospital in Portsmouth - supervised by yet another wonderful bunch of doctors and nurses. It was not until after I had moved though that I became aware of the enormous and relatively autonomous power of purchasing Health Authorities. I had made an (incorrect and rather naive now) assumption that renal care in Britain was governed by a ‘standard’ - the idea that some Health Authorities were able to refuse treatment was not something I had ever considered.
St Mary’s provides renal care for seven purchasing authorities and several of these refuse to provide the minimum required level of dialysis for their patients (although will purchase it for their patients using other hospitals). My Health Authority would only purchase two sessions of dialysis a week for me and I was left for some considerable time to drive myself back to my renal unit in Cornwall to receive my essential third session every week (a session offered to me by my consultant in Cornwall). I am actively involved, along with my consultant here in Hampshire, in alerting the Health Minister and his Government to this unjustifiable discrimination he and it chooses to change little.. The fight continues in earnest.
I continued to dialyse and take the immunosuppressant drugs essential to keep my transplanted pancreas happy.
In May of this year 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.
So in what ways are a woman’s ‘needs’ both pre and post transplant different or ‘special’? There are, in my opinion, many areas of special concern for a woman but I would hazard a guess that just two areas present the greatest concern for most female patients. I believe these must be addressed in an informative, non-sensational but very detailed way. They are the way we look and the way we feel. They are inextricably linked and can almost be dealt with as a single issue.
Someone said to me once ‘change the things you can’t accept and accept the things you can’t change’. The most valuable piece of advice I have ever taken on board and subsequently applied to each area of my life. There is a lot in renal failure that cannot be changed and that must be accepted - your diagnosis, the need to dialyse, the need to adhere to diet and fluid restrictions and the fact that your life WILL change dramatically. There is no point in wasting time and energy arguing these facts.
The ‘variables’ are the areas open to be ‘changed’ a little to suit you. As a woman, I believe these variables include, most importantly, the issue of self-awareness - the struggle, in my case, to present myself to the outside world, as ‘as near a normal woman’ as I possibly can within the constraints of my chronic illness. This is not easy after transplantation, due in no small part to the fact that some of the side affects associated with the immuno-suppressant drugs are ugly, very visible and distinctly unfeminine (weight gain and increased facial hair growth). Before successful transplantation it is even more difficult. The struggle to reconcile the various aspects of treating this/these condition/s and moulding them into an acceptable female form capable of looking presentable and dealing with the pressures of sustaining or building relationships, is a challenge of monumental proportions. This said, with accurate and sensitive information and care, the journey through renal failure can still be made more tolerable for the female patient.
Almost every female patient with whom I have spoken over the past 8 years - some like me, dealing with this condition in conjunction with other chronic conditions - has stated the single issue of their change in body image both pre and post- transplantation, as being the most difficult to come to terms with; and the area in which there has been little offered in the way of compromise.
As I have stated there is little room for manoeuvre before transplantation with regard to the medical treatment of renal failure. But even pre-dialysis ‘body image’ is an issue, and the question of which of the two forms of dialysis to choose will impact on the female patient’s perception of herself.
She needs to know IN ADVANCE that by selecting CAPD she will have a permanently distended stomach and a permanent plastic catheter protruding from the wall of her stomach. This makes being naked unattractive and the implications of this need to be addressed frankly and fully. By selecting haemodialysis she needs to know IN ADVANCE that a fistula in her arm or leg will be noticeable, will buzz (almost audibly) may become quite ugly and distended and will probably attract attention. Of course the bodily ‘defects’ both these forms bring about are almost reversible post transplant.
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. It is also possible that with a deliberately suppressed immune system, a transplanted woman will become more predisposed to colds, gastric and urinary tract infections (transplanted kidneys are usually attached to the bladder and not placed in the ‘native’ kidney area which is why this is a particular area of concern). These considerations will impact her ability to commit to an employer.
This does not, however, rule out full time employment and indeed returning to work is something that most patients sight as a ‘goal’ in their days pre-transplantation. It also has to be said that this is a major consideration in the financial argument ‘for transplantation’ - the hope that we will all one day be contributing to the Health Service and not draining it!
A woman having dealt with the time spent in renal failure followed by the period surrounding a transplant and all that that journey entails will still be left with the burning question of how much to tell people about her ‘condition’ and, more importantly, when. This is an issue which owes little to external ‘norms’ and a great deal to the individual and her aptitude for assessing a third party’s ability to deal with ‘The Details’. For my part, I feel inclined to make one sweeping generalisation at this point - the moment I am within a ‘medical’ environment I am happy to tell all. Outside of this I have got it so wrong too many times to venture an opinion on how to deal with specifics in this issue. Suffice to say it is very easy to become a ‘medical bore’ and to put people off their food! It has been my experience that people with a genuine interest will determine the boundaries and it is a good idea to remain within these imposed limits. Genuine interest is healthy and should be addressed in an honest and open way.
I guess it would be prudent to say here that maintaining links with good friends throughout renal failure is vital for several reasons. For a start it eliminates a large part of the problem of how much of your ‘history’ is required in order for people to gain an opinion of you; and it gives a fairly accurate indicator of how much involvement the people closest to you want. Probably the most important reason for maintaining these links though, and it is remarkably tempting to become quite insular throughout the ordeal of renal failure, is that these friends represent the life to which we all strive to return post transplant!
This said I would still comment that on talking to fellow (single) female transplant recipients it has dawned on me that we appear to have acquired an unrealistic ‘this is my problem and I don’t expect anyone else to deal with it’ approach to our future. That’s a shame because life is too short and everyone has their own form of ‘baggage’. We must learn to let others make that decision. Everybody is a product of how they have dealt with what life has thrown them. To conquer renal failure and live with transplanted organ/s has got to be a source of admiration! If only it were that easy to put theory into practice.
I have written this for three reasons.
The first - to provide you with a window into the world of a woman in renal failure and all its ancillary problems - and triumphs (!) however close or distant your relationship with a woman with this condition may be.
The second - is my passion - that is to ask that you talk to your family about organ donation and what it means to you. So many grieving families are left unable to make that final decision because we as a nation find it so hard to talk about death and organ donation. If you decide that orgam donation is not for you then WITHOUT EXCEPTION your wishes will be respected to the letter. But when a firm grasp of a person’s wishes on this emotive subject is missing ‘in life’, the possibility that they did NOT wish to participate in organ donation is adhered to ‘in death’. We could augment current transplant rates by several thousand (each person has two kidneys to donate in death) if we had a clearer knowledge in advance, of people’s wishes. Please talk about it.
I am now in correspondence with the family of my first donor and I hope that my life has served, in some way, to alleviate their sense of loss. My feelings of gratitude and respect for them in what must have been tortuous circumstances remain as strong today as they were in 1994.
My final reason for writing this is to offer hope to those of you who may be looking at renal failure from the other end. A useful habit I have adopted is to write my questions down and then take them into the hospital with me. It is too easy to become distracted in a consultation, especially when there is little time. I would recommend writing everything down. Also read as much as you can about your condition and become involved in the decision making process. Almost everyone you come across in the field of renal medicine will be pleased to help you.
28 November 1999
Kidney Failure, the Facts — Prof Stewart Cameron, Oxford University Press
| NHS Organ Donation Register | obtain form from local surgery or ’phone any hospital transplant co-ordinator for details | |
| The British Diabetic Association | (020) 7323 1531 | |
| The British Kidney Patient Association | (01420) 472021/2 | |
| The National Kidney Federation | (01909) 544999 | |
| National Kidney Research Fund | (01480) 454828 |
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