Living with Chronic Kidney Disease - Pre-Dialysis

Optimal predialysis care

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Another book you can get from Amazon which I found to be quite good was the book "Coping with kidney disease" my nephrologist recommended. I don't follow the ultra low protein diet recommended in that book. But it has a tremendous amount of very useful information. This is a rather long winded review but I wanted fellow sufferers of chronic kidney disease to know how I felt. This book receives 2 stars because it was a good synopsis of the basics renal disease patients should know. But the cost for the amount of information given and it being a gateway to a paid website is unacceptable.

One person found this helpful. I am so angry that I bought this stupid book. I hope this idea doesn't catch on in publishing. It costs too much to return it or I would. This was such a bummer as we really wanted information and recipes for pre dialysis use. I have been diagnosed with stage III ckd after a bout with sepsis. I have many questions and worries and thought this book and the companion "create your own kidney diet plan" would help me.

They are both poorly written and organized.

I am left with even more worries and less clarity on how to live with this disease and delay dialysis as long as possible. Kindle Edition Verified Purchase. The authour describes quite well, but not completely all the symptons of kidneys disease, the promised tips are not included. Only a link to a personal website where he or they sell adequate recipes.

Introduction

Also the book does not describe only mentions the many cases caused by Ketoprofene, the worse chemical that causes kidney disease from good functionality to directly 4th or even 5th stage. All in all, the brief summaries of some causes and related diseases are just that Living with Chronic Kidney Disease was purchased to help me understand what my twin sister, who is in Stage 5 is going through. Sometimes we fear the unknown, but the information was so valuable and clear that I could hardly put the book down. It brought new understanding to me where I will be able to help my sister, myself, and others.

I feel more comfortable now from reading the book that I also purchased the weekly menu plan at [ Thanks Mathea Ford for a great book. I found this book to be informative and it was easy to read. It was when I went on the web site that I got turned off. When I signed up for the e-mails, except for the first one I found them all to be advertisements for other products.

Filled with a wealth of pertinent info. A must read for those facing kidney problems.

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Editorial Reviews

Amazon Inspire Digital Educational Resources. This is also suggested by the literature; high mortality rates and prevalence of comorbid conditions, even in patients at earlier stages of CKD have been reported [ 3 ]. Members of the association requested attention for patients with moderate-to-severe CKD GFR 20—45 , their Quality of Life QoL and their experienced problems since they felt neglected by the association and professionals.

The existing literature consists of very few studies on the experiences of patients with moderate to severe CKD stages 1—3 and their QoL. Most of the studies focus on patients with advanced CKD stages 4 and 5 [ 3 ]. The studies conducted on the QoL of patients in stages 1—3 describe a decreased HRQOL among patients with mild-to-moderate renal dysfunction compared with the population having normal renal function [ 3 ]. One may expect that the QoL of patients decreases with a decreasing GFR but studies on this relationship give conflicting results.

Lee and colleagues included patients with CKD stages 1—3 in a study. Lemos and colleagues have however described other results. They investigated patients with CKD at stages 1—5 not on dialysis yet and concluded that the degree of renal function did not influence QoL [ 4 ].

Gender, age and family income were, however, described as affecting QoL [ 4 ]. In these studies, QoL seems to be impaired in all stages of the disease and it is unclear whether or not there is a strong relation between GFR and QoL [ 3 , 4 ]. Gender, age and family income seems to be important factors that influence QoL [ 4 ].

These insights are important but do not give us insight into the profound experiences of patients living with CKD and the factors that may influence their QoL. Qualitative studies can be helpful for a more profound understanding [ 5 ]. The literature describes several qualitative studies, for instance, on experiences with dialysis, experiences with living-related transplantation and living with a kidney transplant.

However, studies on the impact of living with less advanced CKD and how patients experience their QoL and what they need in order to stay physically and mentally as healthy as possible, are lacking. We, therefore, performed a qualitative study aimed at describing the experiences and needs of patients with moderate-to-severe kidney damage GFR 20— The inclusion criterion of a GFR between 20 and 45 was strongly recommended by the scientific advice committee of the funder, the Dutch Kidney Foundation.

The members of the committee nephrologists asked us to combine stage 2, 3 and 4 in order to get a more similar group with less diverging experiences. The sampling for our method of recruitment in this study was purposeful as we were selecting a rich variety of patients in terms of age, gender, GFR, hospital in which patients were treated, method of recruitment in this study patient association, Facebook, hospitals [ 6 ].

Patients were asked to report their latest GFR as measured by their medical doctor to check whether they actually met inclusion criteria. All patients that were directly asked by the NVN and professionals to participate were willing to participate in an interview or focus group. The research team, taking the criteria into account, made the selection of participants from those willing to participate.

A team consisting of academic researchers and a renal patient conducted the study. Actively including patients as partners in research has several advantages such as establishing trust and openness [ 7 — 13 ]. In the first part of the study, 31 semi-structured interviews were completed by one of the academic researchers psychologists and anthropologist and the patient researcher [ 11 ]. The academic researchers previously participated in courses on how to conduct qualitative studies and all interviewers were experienced in conducting qualitative studies.

They took general quality criteria for the semi-structured interviews into account, such as asking open-ended questions, using different probes and avoiding jargon [ 14 ]. The interviews were aimed at obtaining insight into the experiences of patients.

All interview transcripts were subjected to a thematic analysis [ 15 ]. First, all of the entire transcripts were read line by line and emerging themes were coded. New themes in the transcripts were added to the list of codes and then used to re-analyse the interviews that had already been analysed. To enhance credibility, we adhered to the following procedures: Focus groups can be used to deepen, explain or check data. The entire research team prepared the focus groups and a senior researcher KS led them, using a protocol see Appendix 2.

After three interviews, it became clear that fatigue seemed to be an important complaint of the participants. The interviews were not analysed yet, but fatigue was a prominent theme in the three interviews. To gain better insight into the fatigue experienced, we decided to add the Checklist Individual Strength to measure the experienced fatigue [ 18 ]. All patients, including the first three patients, were asked to fill out the questionnaire after the interview or focus group. The Medical Ethics Committee approved this study including the questionnaire , and the procedures followed were in accordance with the ethical standards of the Medical Ethics Committee of the VU Medical Center.

All participants voluntarily took part and none of them declined our request to participate. All participants gave verbal informed consent. Confidentiality was maintained by restricted, secure access to the data, destruction of audiotapes following transcription and de-identifying the transcripts. In total, 41 patients participated in this study. GFR between 45 and 59, stage 3B: GFR between 30 and 44 and stage 4: The interviews and focus groups resulted in an overview of experiences. All of these themes are described below.

Each quotation is marked with the number of the participant as well as their gender, age range and GFR. A few participants did not experience any physical problems, but the majority of the participants mentioned several complaints. Problems expressed were fatigue, concentration and memory problems, cramp, being unfit, feeling cold, gout, restless legs, kidney pain and itching.

Fatigue was mentioned as the most problematic complaint:. R6, F, 26—35 years, GFR How to describe fatigue? R4, F, 56—65 years, GFR This qualitative finding was validated by the CIS-Fatigue questionnaire. It is a never-ending story and you are running from problem to problem. R14, F, 46—55 years, GFR Dealing with the problems was especially difficult because participants did not know whether to attribute the complaints to the disease or to isolated problems:. R32, M, 46—55 years, GFR Having CKD as a child influenced the dynamics of childhood and adolescence.

Participants had to make other choices and were not able to follow the same route as their peers. They felt that they were treated as being different and that the environment usually did not adjust to their illness. Their possibilities and capacities declined because of the illness, while the possibilities of their peers increased:.

R38, M, 36—45 years, GFR The illness may influence the intimate relationships of patients. Lack of communication was mentioned as one of the causes of relational problems and in some cases, CKD led to divorce. Finding new intimate relationships was also described as difficult. Some participants actually experienced people being scared off by the disease:. R20, F, 36—45 years, GFR Fears for the future were also expressed.

Participants feared for the continuation and endurance of their intimate relationship in the light of further progression of the disease:. And can we stay partners on equal terms? R16, M, 36—45 years, GFR The insecure future, the possible harmful effect of being pregnant on kidney functioning, and heredity were taken into account:. But he also mentioned the risks for my kidney. R23, F, 36—45 years, GFR They have their own opinions and prejudices. Some female participants, however, did not have any choice at all. They were not able to have children due to their CKD. Other participants had difficulty becoming pregnant and needed fertility treatment.

For those that did have children raising them may be negatively influenced by CKD. Participants mentioned feelings of being restricted in regard to family activities, which led to feelings of sadness or guilt:. R22, F, 36—45 years, GFR Furthermore, they did not like the fact that their children had to deal with the consequences of their disease. They found it important that their children should be allowed to be children, despite the disease of one of their parents. However, this ideal turned out to be difficult or sometimes impossible.

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In some cases, this gave rise to tensions between parents since their children expressed their dissatisfaction to the healthy parent. R18, M, 56—65 years, GFR CKD influenced social contacts, often in a negative way. Friendships were lost, because participants did not have enough energy to be an active partner in friendships or to be involved in activities.

Work was stressed as being important for social contacts:. R10, F, 56—65 years, GFR Losing work due to CKD often resulted in losing contacts. Some participants were afraid of losing friends in advance, but the reality was not as bad as they had anticipated. Other participants explained how they consciously chose to maintain fewer friendships.

Having fewer friends made it easier to keep in touch with those contacts:. And I assumed that I needed to maintain all these contacts. Many participants expressed their struggle with existing ideas about CKD in society. Those around the interviewees were often perceived as associating CKD with dialysis or transplantation. Participants often perceived those in their environment as being unaware of the problems of this particular category of patients:.

R9, F, 46—55 years, GFR Some participants do not feel that their complaints are taken seriously, in part due to inadequate image formation: The participants themselves, on the other hand, also tend to trivialise their disease and complaints by comparing their disease with more severe diseases, such as cancer, although the prospects of many forms of cancer are better compared to CKD:.

R37, M, 66—75 years, GFR Participants often do not feel taken seriously by professionals. They were lacking the acknowledgement of professionals:. R41, F, 46—55 years, GFR In part due to this attitude of professionals, invisibility, unfamiliarity and trivialising, participants mentioned pressure to defend themselves and their complaints. Sometimes, they felt they had to persuade others that their complaints were real, not the same as those experienced by others everyone is fatigued sometimes and not faked.

Patients and the people in their environment struggled with the legitimacy of the disease. R8, F, 36—45 years, GFR Some participants lived a life full of secrets: Participants also expressed fear of being stigmatised, facing prejudice or of no longer being taken seriously:. Some participants expressed embarrassment because of their disease, their restrictions or required devices, especially those with physical restrictions.

The disease and losses also negatively influenced their identity. Some participants mentioned feelings of being worthless, useless and dismissed since they lost a lot as a result of their CKD:. They know me as the one dancing on the tables. Many participants were no longer able to work or were only able to work part-time, which could lead to financial pressure. Fatigue was the most common reason for this:.

I fell asleep during my work! R5, F, 26—35 years, GFR Making the choice to stop working or to decrease the number of hours was experienced as a tough decision that led to various feelings, such as the feeling of losing everything and being put aside to feelings of being relieved or feeling empty. Work was often described as important since it gave people a sense of identity. As a result, sometimes participants tried to do their best to keep working.

Maintaining a job was also important since people did not want to receive alimony or have financial problems.

Looking after yourself

Receiving alimony was associated with financial problems and with embarrassment and fear of prejudice:. R41, F, 36—45 years, GFR Participants abandoned other activities and social contacts just so that they could work as much as possible. They became exhausted and did not have sufficient energy for other activities, which led to the question: R27, F, 46—55 years, GFR Workplace adaptations were sometimes possible, but led to less satisfaction or a sense of loss of status. Participants also had to deal with the reactions of their employer and company doctor.

Some participants experienced a lot of understanding whereas others did not experience much empathy. In addition, company doctors and those conducting medical examinations for social security often know little about the impact of CKD in earlier stages:. Participants further, expressed feelings of being punished for being sick. Participants experienced the care received as being insufficient and not attuned to their needs and situation.

One problem is the lack of information after diagnosis and during progression of the disease. Most participants were shocked by the diagnosis, even if they knew there was a high possibility of having the disease. Realising that the disease is progressive and unpredictable was difficult and participants needed some time to accept the diagnosis.

They desired more information about their disease and its consequences, but this was often lacking. The information they received did not fit their situation since it was focused on pre dialysis and transplantation:. R28, M, 26—35 years, GFR Patients expressed various experiences with their nephrologists. Some were really satisfied whereas others were unsatisfied. Dissatisfaction was often the result of a lack of personal contact and being taken seriously:. R2, F, 46—55 years, GFR And the only thing he does, is telling you: Participants lacked multidisciplinary care, for instance from a social worker or dietician other than their physician.

They also lacked self-management opportunities:. Participants who received such care were more satisfied, but the offer often came too late so patients had to arrange their care themselves, wondering where to find adequate and valid care:. By participating in such projects they hoped to slow the progression of their disease. However, being the subject of scientific research sometimes resulted in a more frequent confrontation with the disease:. Yes, I jumped for joy when I could participate.

But there is also another side of the medal. A first injection, a second injection, a subsequent test, yet another test. Some participants were also already thinking about future therapies. They did not always feel supported by professionals who did not want to give information about future treatments or professionals who advised patients not to worry about the future:.

Other opposite problems arose when pre-emptive transplantation was already mentioned as a possibility. Professionals, according to patients, talked too easily about finding a donor. I was looking at my family and friends and then decided: Talking about pre-emptive transplantation was experienced as difficult. Participants did not know how to introduce the subject or they felt pressurised to find a donor. Some participants who did ask their relatives to become a donor had to deal with negative reactions. Participants also found it difficult to wait for a treatment, such as transplantation, to be carried out.

Patients with CKD experienced difficulties that they had to deal with. One difficulty was dealing with a slow decrease of kidney function and insecurity about the future:. It is such a silent disease. Participants used many strategies to deal with their disease and restrictions. Most of the time they were able to deal with the disease and its consequence and they showed a considerable amount of resilience. Trying to stay in control was one of the mentioned strategies. A way of doing this was by following a diet or initiating other lifestyle adaptations:. Having no possibility to control the disease was associated with stress, whereas lifestyle adaptations provided a sense of control:.

Living a healthy life is the only thing. This can be frustrating sometimes. R26, M, 18—25 years, GFR Some participants however did not want to adapt their lifestyle because they expected these changes to negatively impact their quality of life:. Another way to keep a sense of control was by setting boundaries and anticipating bodily signals. Finding and maintaining personal boundaries were reported as time- and energy consuming but helpful. Participants experienced additional barriers because of the incomprehension of the environment and deterioration of the disease:.

They are asking you … can you please do this and that … And my reply: Other coping strategies mentioned included focussing on the present and possibilities instead of on the insecure future:. I tend to ignore the future a little. R20, F, 36—45 years, GFR This could be difficult, but it was seen as being just as important as staying positive and hopeful:.

Communication and openness about restrictions were also mentioned as important. Openness led to understanding, but it was daunting because people feared the possible negative consequences of being open:. I just wanted to take part as long as possible. Energy management was a final way to deal with restrictions. Patients tried to use their diminished energy as effectively as possible. Making choices was reported as being necessary but also difficult:. What is most important to me? In the end, acceptance was needed but participants needed time to reach a state of acceptance, and sometimes acceptance was impossible for patients:.

R33, F, 56—65 years, GFR Their QoL seemed to be decreased in all stages of the disease [ 3 , 4 ] and it is unclear whether or not the GFR influences the QoL [ 3 , 4 ]. Participants in this study mentioned many experiences that had not previously been described in the literature and are not yet sufficiently recognised in daily practice. This study shows, in general, that living with decreased renal function already influences the QoL of patients across several domains.

Four main findings were mentioned most often and were emphasised the most by participants. We will discuss these findings in more detail below. Fatigue was also mentioned very often in the interviews and focus groups. Fatigue is often described in the literature as being very problematic in CKD, especially during dialysis [ 19 — 24 ]. Fatigue after transplantation has also already been described [ 25 , 26 ]. However, prior to this study, fatigue was not mentioned in combination with a GFR of between 30 and 45, while this study suggests that fatigue can be seen as a significant problem for the majority of patients with moderate-to-severe CKD.

Patients do not feel taken seriously by physicians who ignore the fatigue or tend to allocate it to causes other than renal disease.

Problems are only expected if the GFR drops below 30, as was also described in Dutch and international education materials for patients.

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