Top Tools to Help Manage Your IgA Nephropathy Care

Tools to Manage Your IgA Nephropathy Care
By 
the PicnicHealth Team
April 4, 2023
Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

Managing a chronic condition can be challenging, but there are tools to help patients monitor their health and manage their symptoms. From wearable health monitors to online medical record platforms, blood pressure monitors, symptom-tracking apps, and diet-tracking tools, patients have a variety of resources at their disposal. Here are six tools that can help you take control of your health and manage your IgA Nephropathy:

  1. Wearable health monitors: Utilize the power of wearable health monitors like the Apple watch or Oura ring to monitor heart rate, sleep patterns, and physical activity. This data can be useful for both patients and healthcare providers to track changes in baseline health status over time and identify potential issues.
  2. PicnicHealth: PicnicHealth is an online platform that allows patients to access their medical records in one place. This tool can help patients keep track of their lab results, imaging reports, and medication lists, which can be useful for managing their care and communicating with healthcare providers.
  3. Blood pressure monitor: A blood pressure monitor is a crucial tool for patients with IgAN, as they may need to monitor their blood pressure regularly. High blood pressure can further damage the kidneys and lead to complications. A blood pressure monitor can help patients accurately track their blood pressure at home and provide valuable information to healthcare providers. There are many blood pressure monitors available on the market, and it’s important to choose one that is easy to use and reliable. Consult with your healthcare provider to determine the best blood pressure monitor for your needs.
  4. Symptom tracking apps: There are many symptom-tracking apps available online that can help patients monitor their symptoms and communicate with healthcare providers. These apps can be useful for identifying patterns and trends in symptoms over time and helping patients and healthcare providers make informed decisions about treatment. Check out apps like Flaredown, Symple, and CareClinic.
  5. Diet tracking tools: Following a healthy, kidney-friendly diet is essential for managing IgAN. Patients may need to track their food intake and ensure they are meeting nutritional needs while following their dietary restrictions. There are many diet tracking tools available online, such as MyFitnessPal and Chronometer, that can help patients log and track their food and nutrient intake. Some of these tools also provide recipes and meal-planning suggestions tailored to patients’ dietary needs.
  6. Smartphone built-in health apps: Cristie Field, an IgAN Warrior and kidney transplant recipient says, "I use Apple Health to keep track of meds, heart rate, blood pressure, water intake, etc. I recommended it to my transplant team as well for patients who want an easy way to track and log medications, and get reminders." Many smartphones come with built-in health apps that can help patients track and monitor their health. For example, Apple Health allows patients to log and track their medication intake, monitor their heart rate and blood pressure, and track their physical activity. Patients can also use these apps to set reminders for medications or appointments. It’s important to consult with your healthcare provider to ensure that the information tracked by these apps is accurate and relevant to your care.
  7. Virtual Appointments: Due to the COVID-19 pandemic, many healthcare providers have started offering virtual appointments. Patients with IgAN may want to ask their healthcare providers if virtual appointments are an option and what tools they need to participate.

The tools and resources available for managing chronic conditions like IgA Nephropathy can be immensely helpful. From wearable health monitors that track physical activity and sleep patterns to symptom-tracking apps that help you identify patterns and trends over time, these tools offer a range of benefits. However, it's important to remember that not all tools are created equal, and it's always a good idea to do your research and consult with your healthcare provider before making any changes to your treatment plan. By using these tools in conjunction with professional medical advice and care, you can take a proactive approach to manage your health.

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the PicnicHealth Team

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Create a List

List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.

Ensure You Have the Appropriate Legal Status

It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.

Gather and Organize the Medical Records in One Place

It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.

Review the Medical Records to be an Informed Advocate

The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.

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Together, we can make a difference.

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1

Build a support network.

When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.

2

Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.

3

Explore treatments and clinical trials.

We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.

4

Make time for self-care.

It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.

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LC-FAOD Odyssey: A Preliminary Analysis, presented at INFORM 2021

Data from real-world medical records:

(from 13 patients with LC-FAOD)

16 yrs old

Median age at enrollment

38% Female

15 providers / patient

7.5 years of data / patient

Data from patient-reported outcome (PRO) survey

(from 13 patients with LC-FAOD)

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Tip: Download or print the poster at the end of this article to review before your next appointment!
However, it's important to consult with a healthcare provider or registered dietitian to determine the appropriate amount of protein for your individual needs. In general, a diet with moderate protein intake (about 0.8 grams per kilogram of body weight per day) is recommended for people with kidney diseases.

Learn more about contributing to IgAN research with PicnicHealth. 

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Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.

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