Good healthcare is always a team effort - especially for people living with a chronic disease, such as dRTA (distal renal tubular acidosis). Since each member of the healthcare staff contributes to your care, it is important for you and your family to build a good working relationship with them. Do not be afraid to ask a doctor, nurse, or other member of the healthcare team to clarify any explanations, medical terminology you don’t understand or instructions that are unclear; and let them know if you have any questions or concerns about treatment. Taking an active role in your healthcare will help you feel more empowered and in control.
Prepare for appointments
It is important to show up to all medical appointments. You should reschedule any appointments that you cannot attend. You should also prepare for your appointment ahead of time. Here are some tips to help:
- Write down your questions. Put your questions in order so you’re sure to ask about the most important ones first.
- Keep a list of all the medications you are taking. Tell your clinician about any over-the-counter medicines and supplements you have been taking.
- Note any new symptoms you have been feeling and let your healthcare team know about it.
- Ask a family member or friend to come with you. They can remind you what you planned to discuss in case you forget, and can help you remember what the clinician said.
Communicate with your healthcare team
How well you and your healthcare team talk to each other is important. Taking an active role in your healthcare can help you feel more in control. Together, you and your healthcare team will work to make treatment choices that are best for you.
Sharing information with your healthcare team is important to make sure you and your medical team have all the information needed to develop a plan of care that is individualized and works best for you.
Ways to share information can include the following:
Describe any signs and symptoms
- A symptom is something you feel.
- Information about your symptoms along with findings from a physical exam and medical tests can help make a diagnosis.
- Give the nurse and doctor a brief description of the symptom, when it started, how often it happens and if it is getting worse or better.
- Possible signs and symptoms of dRTA can include the following:
- Confusion or decreased alertness
- Muscle weakness
- Breathing difficulties
- Increased heart rate or irregular heartbeat
- Muscle cramps and pain
- Pain in the back, sides or abdomen (known as flank pain)
- Bone pain
- Less urine output
- Difficulty hearing
Update your healthcare team
- Tell members of your healthcare team what has happened since your last visit.
- Let them know about any changes in symptoms, appetite, weight, sleep, or in the medications you take.
- Also tell them about any medication side-effects you are experiencing.
- Take a notebook to your appointment to remind yourself what was said.
- Get a friend or family member to take notes for you.
Ask your clinician to write down instructions for you
- Ask for printed materials about your condition or suggestions for where you can get more information.
Types of questions you can ask
With dRTA, the kidneys cannot effectively remove acids from the blood into the urine. dRTA can be inherited (primary dRTA) or caused by another disorder or medication (secondary or acquired dRTA). You and your healthcare team will need to work together to make treatment choices that are best for you. Here are some questions to help you begin a discussion.
General questions can include:
- How severe is my disease?
- How can I keep my condition from getting worse?
- What changes or symptoms do I need to watch for and tell you about?
- What kinds of over-the-counter medicines should I avoid because of my disease?
- What treatments will I need?
- Are there any risks associated with my treatment?
- How long will treatment last?
- What other treatments are available?
Questions about medication can include:
- How often should I take my medicine? At what times of day?
- Should I take it before, with, or after meals?
- Should I avoid any foods, medicines, or alcoholi beverages when I take it?
- Are there times when I should change the dose of medicine I take?
- What should I do if I forget to take it?
- What side effects can this medicine cause?
- What should I do if I have medication side effects?
Questions about managing possible complications of dRTA can include:
- Do I need to worry about kidney stones?
- Will I need to make any changes in my diet?
- Do I need to drink more water? If so, how much should I drink?
- How can I prevent kidney stones?
- Is my bone health a concern? If so, what should I do to help keep my bones as healthy as possible?
If you are interested in participating in a clinical trial, or to determine if a clinical trial is right for you, discuss the possibilities with your family and your healthcare team. Questions about participation in a clinical trial can include:
- Is a clinical trial right for me?
- How do I learn more about clinical trials?
- What are the advantages/disadvantages of participating in a clinical trial?