If you’ve been diagnosed with atypical hemolytic uremic syndrome (aHUS), you might feel alone. aHUS is very rare, and meeting others with the disease isn’t common. As a result, you might know about the basics of the disease but not all that comes with it – like the importance of taking care of yourself, adapting your lifestyle to minimize flares, advocating for yourself, and asking for help when you need it. Everyone’s experience with aHUS is unique, but learning about what you can do for yourself and why self-care is important can be helpful.
Develop a Support Network
Everyone needs help sometimes, and if you have aHUS, you might need more help than you’re used to. Start developing a support network before you need that help. This way you can have people around you who understand your issues and you don’t have to try explaining it when you might not be at your best. You can form these networks by joining support groups (online or in person) and talking to friends and family about your illness.
Your care team may have a social worker on staff. Social workers are a great source for finding what type of support is available in your community.
Support groups
Because aHUS is rare, you might not be able to find an aHUS support group, but you might find help among groups that focus on kidney disease or rare illnesses in general. You can ask your doctor, clinic, or social worker if there are any online or in-person support groups that they know of. Once you start meeting people, they might suggest other groups or organizations for you to check out.
Family and friends
Some people are private and don’t want others to know about their illness. But if people don’t know, they can’t help you when you’re in need. Explain to friends and family what aHUS is and how it affects you. Talk about the kind of support you need. You can start with explaining your diet, for example, especially if you share lots of meals. Tell them the medications you take so if there’s an emergency, they can tell medical staff about them. Let them know if you have problems doing things and if you’ll need breaks – and if you need them to do things for you, say what they are. People often want to help friends and family but don’t know what they should do.
If you feel comfortable, explain your illness to your co-workers, too, so they can learn about help you might need at work.
Counseling
You can go for counseling alone or with family members. A therapist or counselor can help you sort through your feelings about living with aHUS. Couples and family counseling can help the others in your life sort through their own feelings as well as understanding yours.
Getting Moving for Both Your Physical and Mental Health
Being physically active might be close to last on your to-do list when you’re not feeling your best, but getting exercise and staying active is an important part of self-care if you have aHUS. Studies show that getting exercise can help improve your mental health as well as your physical health. Getting exercise doesn’t mean you have to join a gym or participate in organized sports if you don’t want to – although those are great ways to stay active. Exercising with aHUS can mean doing any of these activities for at least a half hour at a time, three times a week or more:
- Walking
- Swimming
- Cycling (indoors or outside)
- Skiing
- Gardening
- Dancing
- Anything that keeps your large muscles moving
If you have weights at home or you belong to a gym, some weight and repetition exercises are also helpful.
Whichever type of exercise or activity program you want to follow, check with your doctor if you’ve not done it before to make sure it’s OK for you to go ahead. Also, listen to your body and don’t push yourself too hard. The goal is to feel good about the activity, not hurt yourself!
Get Outside and Experience Nature
Spending time outside in green spaces can help raise your mood and improve your physical health at the same time. For people who live in urban areas, this can be challenging, but even walking in a park or sitting on a bench by a tree can have positive effects. The sunlight also plays a role in your well-being. If you can, try to get outside for about a half hour a day.
If you can’t get outside, even standing by a window and looking outside for 5 minutes can help.
Managing Your Diet Might Help Reduce Flares
Certain foods can cause aHUS symptom flare-ups. By managing your diet, you can help reduce this risk. It can take some trial-and-error to find out if specific foods can be a culprit, but there are also some general dietary recommendations that might help you. Ask your doctor to refer you to a dietitian to help you learn about an aHUS-friendly diet. The types of foods you should avoid will have a lot to do with how damaged your kidneys are.
The best way to follow a kidney-friendly diet is to look at the DASH diet. Originally designed to help people who have high blood pressure, the DASH diet is a healthy way to eat for anyone. This diet calls for lowering your salt and fat intake but increases foods that are rich in potassium, calcium, magnesium, protein, and fiber.
Don’t be intimidated if you read about foods you should avoid though because many of the changes you can make to eat a healthier diet aren’t hard. For example, the recommended daily salt intake for the average adult is about 2,000 milligrams of sodium per day – that’s a teaspoon of salt a day. You can reduce your salt intake by checking labels and buying reduced-salt items, using herbs and spices in your cooking instead of salt, and eating frozen vegetables instead of canned. (Tip: If you use canned vegetables, rinse them off before cooking them. This will cut back on the salt.)
Stay hydrated
Be sure to drink plenty of fluids throughout the day so you stay hydrated. This allows your kidneys to work better. However, some people must limit how much fluid they drink, so check with your doctor to see if you need to watch how much you have.
Stay safe, avoid food poisoning
Everyone wants to avoid food poisoning, but if you have aHUS, you need to be extra careful. There’s one bacteria in particular, Shiga toxin-producing E. coli, which actually can cause typical aHUS. Here is how you can reduce your risk of being exposed to the bacteria:
- Don’t drink unpasteurized milk, juices, and ciders.
- Thoroughly wash all produce before eating raw and before cooking.
- Don’t drink water from untreated sources (lakes, rivers, streams).
- When grocery shopping, wrap fresh meat products in plastic bags so it can’t drip onto other foods.
- When you get home, put these products directly in the fridge or freezer.
- Wash your hands well after handling raw meat (beef, pork), poultry, fish, or seafood.
- Don’t reuse a plate or serving dish that had these foods without washing it first.
- Don’t reuse a cutting board or counter surface that has had these foods without washing first.
- Don’t eat raw or undercooked meats. Ensure that all cooked foods are cooked thoroughly, using a food thermometer if needed.
- Always wash your hands before handling food and after doing personal tasks (using the bathroom, changing a diaper) or handling an animal or animal belongings.
Despite our best intentions, sometimes we slip up and eat or drink something that might make us feel worse. It’s important to understand that these things happen and to be gentle on yourself if this happens.
Manage Your Stress and Mental Health
Eating well, exercising, and getting outside are all ways to help manage your stress, but there are other things you can do too.
Practice mindfulness. Think about and feel the sensations of what is going on around you at the moment. Be aware of your thoughts and feelings at the same time. Just put yourself in the moment.
Learn breathing exercises. Some breathing exercises can help you center yourself and make you feel less stressed. One example is called 4-7-8 breathing:
- Place the tip of your tongue on the roof of your mouth and breathe out.
- Breathe in, counting to 4
- Hold your breath, counting to 7 (it can be as fast or slow as you’re comfortable with)
- Breathe out, counting to 8
- Breathe in again
- Repeat a few times
Meditate. Learning how to meditate can help you relax when you need it most. A daily practice of meditation can help you start or end your day or give you a needed break any time.
Watch for triggers that make you anxious. If you notice there are specific things that make you stressed or anxious, you can work on avoiding them or dealing with them before the stress rises too much. For example, if you know you’re heading into a stressful situation, you can prepare yourself with meditation or mindfulness or practice breathing exercises.
Be kind to yourself. Treat yourself like you would someone else. Allow yourself to feel what you feel, to make mistakes, and to start anew. Be gentle with yourself.
Stay Up-to-Date With Your Medical Appointments
It can be tough managing your doctor and other health and wellness appointments if you have a chronic disease. It’s important though because regular visits allow your doctors to see your progress, check what is working and what isn’t, and adapt your treatments as needed.
If you have to see several specialists and they’re all around the same area, check if you can book appointments on the same day to keep you from having to interrupt your regular schedule too often. Ask if any of your specialists offer video appointments or phone appointments for regular follow-ups. While it’s important for your doctors to see you in person sometimes, there could be some issues that don’t need an in-person visit.
Take Your Medications
One of the issues people with chronic illnesses like aHUS face is the need to take medications – sometimes lots of them. And some of these drugs can cause unpleasant side effects. There are a few things to keep in mind when getting prescriptions and taking the medications.
- Make sure all your doctors know about all of your drugs. Specialists don’t always communicate with each other, and one doctor might not know what another has prescribed for you. Bring your latest list of medications with you to each appointment so you can show your doctor.
- Get all your drugs filled at the same pharmacy. Your pharmacist is the medication expert, and it's important that all your medications are listed so the pharmacist can ensure that you’re not taking anything you shouldn’t, you aren’t getting repeat prescriptions from different doctors, and there aren’t any medications that shouldn’t be taken with another you already have. Take all the prescribed medications as indicated on the label. If you encounter any problems, like the time you should take them or mild side effects, speak with your pharmacist because there might be a way to fix these issues without having to change the prescriptions.
- If any of the medications are causing side effects that are too uncomfortable, don’t stop taking the drug but contact your doctor right away. You may need a different type of drug that doesn’t have the same side effects.
Be Your Own Patient Advocate
It can be tough navigating through the health care system, especially when you’re not feeling well. Advocating for yourself can be stressful, but if you put the plans into place before you need them, this can help make things easier for you. Here are some tips to help you be a strong advocate for yourself.
- Learn as much as you can about your condition. The more you know, the more you can discuss the issues with your care team. Ask your doctor if there is literature you can read on aHUS. Join aHUS groups. Ask questions.
- Be as specific and prepared as you can when you attend appointments. Write down anything you need to tell your care team, as well as any questions that you have. Bring a list of your medications too.
- Bring someone with you. You can bring a friend or family member to sit in on the appointments with you. They can be your second set of eyes and ears, maybe hearing or seeing something that you might miss. They can take notes and remind you of questions or concerns if you forget.
- If you can’t bring someone with you, ask if you can record the conversation. That way you can replay it later to make sure you got all the information you need.
- Before you leave the office or clinic, summarize the information to your doctor or care team so you can make sure you heard what you were supposed to hear. Ask for clarification if there is any confusion.
Living with aHUS can be challenging, but if you take care of yourself, it might be a bit easier. Don’t forget: You are the most important person on the care team.
Show Sources
Photo Credit: iStock/Getty Images
SOURCES:
aHUS News: “aHUS and Diet: What Should I Eat and What Should I Avoid?” “Tips for Managing Stress When You Have aHUS,” “Self-care Tips for aHUS Patients.”
American Kidney Fund: “aHUS (atypical hemolytic uremic syndrome),” “Kidney-friendly eating plan.”
BC Women’s Hospital: “Advocacy for Yourself & Others.”
Hospital for Special Surgery: “How to Handle Stress When Living with Chronic Illness.”
Mayo Clinic: “Sodium: How to tame your salt habit,” “DASH diet: Healthy eating to lower your blood pressure.”
National Kidney Foundation: “Staying Fit With Kidney Disease.”
New York State: “Shiga toxin-producing E. coli (STEC) Infections.”
UC Davis Health: “3 ways getting outside into nature helps improve your health.”
