What You Need To Know About Kidney Disease’s Impact In South Asia

Kidney disease is inherently complex, and the challenges associated with managing it are immense. However, in the Pakistan-India region, cultural factors significantly exacerbate these challenges, making the journey even more difficult for patients and healthcare providers alike. This article delves into what I term the "Dark Side of Kidney Disease"—the layers of despair that surround the condition, both from within and from the broader cultural context.

The Emotional Weight of Chronic Kidney Disease (CKD)

The emotional burden of CKD is profound, often deepened by a lack of awareness and understanding. Patients frequently struggle with feelings of hopelessness, which can intensify the disease's impact. To counteract this, I regularly incorporate stories of resilience and hope in my CKD management approach. Recently, I shared the stories of Asad Abbas and Bhanu Pratap in a two-part series, highlighting their experiences to provide insight into the broader context of this disease. Today, we'll explore the reasons behind sharing these stories and what they signify in the fight against CKD.

Introduction and Background

Greetings, I am Dr. Vaseeka from Expert Cons Clinic, Lahore. I'm excited to be back in Pakistan, sitting in my library and recording this video. There's truly nothing better than being at home. Now, let's dive into the factors that make kidney disease more complicated in Pakistan, and the elements of despair that worsen the situation.

The First Major Challenge: Patient Education

One of the most significant factors contributing to the complications of kidney disease is the patient's own understanding of their condition. In Pakistan, and perhaps similarly in India, there is a notable lack of patient education. Many patients are simply not equipped with the knowledge needed to fully grasp the seriousness of their condition.

For example, patients who consult with me—whether in person or online—often come with a positive attitude, having watched numerous videos on the subject. However, during consultations, despite thorough discussions and lab reviews, where I explain their stage of kidney disease and emphasize that it cannot be reversed but can be well-managed with proper treatment, they often default to a simplistic hope: "Doctor, I'll be fine, right?"

This mindset reveals a significant limitation in understanding. Despite spending 30-40 minutes discussing their condition, it sometimes feels like my efforts, and those of my junior doctors who have spent even more time gathering history and explaining the situation, have not fully registered with the patient. They might have heard the information, but they haven't truly understood it.

The situation is akin to explaining to someone that two plus two equals four, only for them to ask, "Doctor, it will be five, right?" at the end of the discussion. This fundamental misunderstanding is a recurring issue in consultations with kidney disease patients, leading to a frustrating and often disheartening cycle.

Financial Constraints: The Second Major Hurdle

The second major challenge is financial. In Pakistan, access to quality healthcare is often limited by financial constraints. Many patients simply do not have the resources to afford the necessary treatments. When a lack of education is combined with financial limitations, the situation becomes even more complicated.

Patients frequently fail to realize that investing in their health during the earlier stages of CKD, particularly Stage 3, could prevent the need for more costly interventions later on. Despite my efforts to explain that an early investment in treatment could save them from the much higher costs associated with Stage 4 or 5 CKD, this message often doesn't resonate due to the dual burden of financial and educational deficits.

However, when education is improved, even patients with limited finances can make better decisions about their health. They can understand the importance of early intervention and make choices that, while initially challenging, could ultimately save their lives and financial resources.

The Compounding Effect of Ignorance and Financial Strain

The combination of poor education and financial strain creates a compounding effect that significantly worsens the prognosis for many patients. This compounding effect is a critical concept in understanding why kidney disease is so challenging to manage in this region. I plan to discuss this in greater detail in a future video, as it plays a crucial role in the progression of kidney disease.

When patients lack the education to understand their condition and simultaneously face financial constraints, they often delay or forego treatment altogether. This delay can lead to a rapid progression from Stage 3 CKD, where management is still possible, to Stage 4 or 5, where the options are much more limited, and the costs significantly higher.

It's important to note that even when finances are not a limiting factor, a lack of understanding can render financial resources useless. This is particularly true for patients from the upper-middle or wealthy classes who can afford treatment but do not have the necessary knowledge to seek it out effectively. As a result, they often end up spending more money but still progress to the later stages of CKD, where the prognosis is poor, and the costs of dialysis or transplantation are immense.

The Role of Family and Friends: A Double-Edged Sword

Another significant factor contributing to the despair surrounding kidney disease is the role of family, friends, and community members. In many cases, these well-meaning individuals unintentionally exacerbate the situation. Instead of providing support, they often offer misguided advice that can worsen the patient's condition.

In Pakistan, it's common for family members and friends to visit a sick person, sometimes bringing food or offering advice. However, this well-intentioned support can lead to increased stress for the patient. For instance, if a patient is managing their blood pressure well at 140/45, repeated visits from concerned relatives, who bring unhealthy food or suggest alternative treatments, can lead to a spike in blood pressure, pushing it to dangerous levels like 165.

Few people are willing to say, "Thank you, but I need to stick to my diet and avoid these foods." Instead, they often give in to social pressure, which can have serious consequences for their health. Additionally, these visitors may unknowingly contribute to the patient's anxiety by discussing their condition in negative terms, sometimes even within earshot of the patient. This behavior can be deeply harmful, as it reinforces feelings of hopelessness and despair.

The Healthcare System: The Third and Most Disheartening Factor

Finally, we come to the third major factor that adds to the despair of kidney disease patients: the healthcare system itself. The system in Pakistan is deeply flawed, and this is particularly evident when it comes to treating chronic conditions like kidney disease.

Firstly, many patients begin their healthcare journey with non-MBBS (Bachelor of Medicine, Bachelor of Surgery) practitioners, such as homeopaths or herbalists, before eventually seeking help from qualified doctors. By the time they reach a nephrologist like myself, they have often tried various alternative treatments, which can complicate their condition further.

In my practice, it's rare to find a patient who hasn't first consulted with a homeopath or a herbalist. Of the ten patients I see daily, only one or two may not have tried alternative medicine. This often means that by the time they seek conventional medical treatment, their condition has progressed further, making it more challenging to manage effectively.

This situation is exacerbated by the lack of regulation and oversight in the healthcare system, which allows unqualified practitioners to operate freely. As a result, patients often receive substandard care, which not only fails to address their condition but may also cause additional harm.

Conclusion: A Call for Change

The journey of a kidney disease patient in Pakistan is fraught with challenges. From a lack of education and financial constraints to the misguided influence of well-meaning family and friends, and finally, the inadequacies of the healthcare system—each factor contributes to the overwhelming despair that many patients experience.

However, there is hope. By improving patient education, advocating for better healthcare practices, and encouraging supportive, informed involvement from family and friends, we can begin to address the "Dark Side of Kidney Disease." It requires a collective effort, but with the right approach, we can help patients manage their condition more effectively and improve their quality of life.

This article is just the beginning. In future discussions, I will delve deeper into these issues, offering practical advice and strategies to help patients and their families navigate the complexities of kidney disease with greater confidence and hope.