Alan's Story

Early Experiences and the V Masking the R
My journey began with congenital vertebral anomalies, affecting my spine from top to bottom. The pain associated with these anomalies has never been straightforward, it fluctuates, alternating between neuropathic discomfort, muscular aches, and pain in the connective tissues. 
Each type of pain brings its own challenges, often overlapping and making it difficult to distinguish one from another.

Throughout my life, I have contended with a persistent, dull pain that often felt distinctly muscular. This discomfort would ebb and flow, never truly disappearing. Given the nature of my spine—twisted, bent, and somewhat rigid—I naturally attributed these sensations to my vertebral condition. Whenever the pain became overwhelming, I would seek medical advice, which typically led to an increase in pain medication. Despite this, I often sensed that something about the pain was different, not quite the same as my usual experience.
There was always a nagging intuition that this was not simply the pain I had grown accustomed to over the years.

Recognising Early Warning Signs
There were several occasions when I experienced what felt like flu-like symptoms, only for additional signs to appear as time went on. These signs included difficulty passing urine, urine that was noticeably frothy and pungent, and a persistent low-grade pain in my back. Sometimes, this pain would intensify into a throbbing sensation so severe it threatened
to take my breath away.
In the earlier stages, I hesitated to seek help from my GP or to call 111, convinced that my symptoms were merely the result of overexerted muscles protesting after I had pushed myself too hard. This reluctance to seek medical advice, however, ultimately resulted in my condition escalating to the point where I became an emergency case, as detailed in the following sections.

Hospital Admissions and Experiences
Over the past twenty years, I have been admitted to hospital on five separate occasions. Each admission has followed a familiar pattern, involving intravenous antibiotics, steroids, and fluids. Notably, the duration of each stay has gradually increased over time—from just a couple of days during the earlier admissions to a ten-day stay for my most recent admission in 2024.
One experience in A&E stands out in my memory. During a physical examination, a doctor delivered a karate-style blow to my lower back—a procedure that will be all too familiar, and excruciating, to anyone with kidney problems. The pain from this action was immediate and overwhelming, radiating sharply from my back into my lower abdomen. It was so intense that I genuinely felt as though I might lose consciousness.
By the time of my fifth and most recent admission in 2025, I had begun to worry that I was being perceived as a "time waster". This sense of doubt and anxiety added an extra layer of stress to an already challenging situation.

Communicating Health History and Advocating for Yourself
Many will relate to the experience of dealing with an HCP that’s not familiar with your Health situation. “Do you have any other health conditions?” By the time I’ve listed VCTERL and my additional health issues, it feels overwhelming to piece it all together, let alone relay the same information to the next healthcare professional I encounter.
There’s also the challenge of explaining that the pain I am experiencing in that moment is not “the usual pain”. During my last admission in 2024, a doctor admonished me for letting my symptoms deteriorate before seeking help. “You must have had pain for some time,” they said. I explained that I had only truly noticed when the throbbing began. Their response was clear: “That’s too late.” What followed was a lesson in listening to my body and understanding its signals.
The doctor then asked, “When was your last review?” Confused, I replied, “Review?” They clarified, “When was your last renal review?” To my embarrassment, I had to admit that I didn’t think I’d ever had one.
Five years ago, I would have simply nodded and kept quiet, but now, I have become more proactive. I started asking questions and seeking explanations about my care pathway. I made sure to mention that I was born before routine screenings for many conditions were introduced. As I left the appointment, I reflected that I’ve managed fairly well to reach my current age, only seeking help for my renal issues well into my fifties.

Practical Tips for Navigating Healthcare Appointments
Navigating the healthcare system can be challenging, especially when dealing with complex or chronic health conditions. Over time, I have learned several practical strategies that help me communicate effectively with healthcare professionals and manage my appointments.

Preparing for Your Appointment

• Bring a pen and paper, or another note-taking device. This ensures you can record a thorough and accurate summary of the appointment, capturing all important details for future reference.

• If you wish to record your appointment, always notify the clinic in advance. This is especially important if you face challenges such as ADHD, which can make retaining information more difficult.

• Prepare a concise summary of your health history to answer questions like, "So, how’s your health otherwise?" This helps streamline communication and ensures nothing important is overlooked.
   

Medication Awareness

• Keep track of all medications you are taking. Be mindful that certain prescriptions, such as painkillers from orthopedic doctors, may not be suitable for individuals with kidney issues.
   

During the Appointment

• Take your time during the appointment. While healthcare professionals are often pressed for time, it is better to address all concerns thoroughly than to rush and leave important issues uncovered.

• Explore reputable health-related websites. Many offer resources like "Health Passport" templates, which allow you to organize and present all relevant information in one place.
   

Advocating for Yourself

• Do not hesitate to challenge or question recommendations if something doesn’t seem right. Assertiveness can be crucial in ensuring your needs are met.

• If you do not understand something, ask for clarification. This is not a reflection of your intelligence; medical terminology can be complex and unfamiliar, and it is important to fully understand your care.

• Remember, you do not have to face these challenges alone. Share your experiences and acknowledge your concerns and anxieties. It is okay to feel scared, and it is perfectly acceptable to request that procedures be carried out in a manner that makes you comfortable. For example, if the presence of another clinician, such as a student, is unsettling, you may ask for them to leave so the appointment remains private between you and your consulting healthcare professional.

 
Practical Tools for Managing Renal Health
At first, I felt a sense of relief mixed with concern about what might be happening with my health. Now, equipped with the right tools, I am confident in my ability to manage my renal anomaly effectively. Making water intake a central focus has been crucial, and I specifically choose bottled water, as I live in a Thames Water region—though no offence is meant to the dedicated water workers everywhere!
Recognising early warning signs, such as unusually smelly or frothy urine that lingers in the toilet pan if not flushed, has helped me monitor my condition more closely. To track my renal health reliably, I regularly use urine dip tests. These provide a straightforward way to stay alert to any changes. Additionally, I make use of a water bottle marked with the recommended daily intake, a helpful resource provided by the Kidney Foundation Trust (with other brands available). This simple practice supports me in meeting my hydration goals each day.