Learning to Live With hATTR Amyloidosis
Next Steps After a Diagnosis
Medically reviewed by Kashif J. Piracha, MD
Getting a diagnosis of hereditary transthyretin (hATTR) amyloidosis is life-changing. This is true if you're experiencing symptoms or have recently learned through genetic testing that you’re at risk for hATTR amyloidosis.
Living with hATTR amyloidosis can be overwhelming, but there are ways to make living with condition easier. Adjusting your lifestyle, participating in clinical trials, and creating a treatment team with many specialists can all help.
This article will include how to cope with hATTR amyloidosis, its impact on your life, and how to get medical and other support.
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hATTR Amyloidosis: Lifestyle and Effects
Amyloidosis causes proteins to build up in the body. This impacts your organs and can cause symptoms ranging from rashes to gastrointestinal issues to organ failure.
Because the symptoms of hATTR vary so widely, it can be hard to know how the disease will impact your life. People living with hATTR report these symptoms:
Less stamina: Most people with hATTR report they have less stamina.
Pain: Many people with hATTR experience pain, which impacts their quality of life.
Emotional distress: Knowing that they have a life-limiting disease can cause emotional distress and lead to mental health concerns, like depression.
Swelling: This may occur in the legs, ankle, feet, or belly.
Social isolation: About 80% of people with hATTR report they have trouble participating in social situations.
Work impacts: About 60% of people with hATTR report taking early retirement or being frequently absent from work because of their condition.
One of the most sensitive questions that comes up in living with hATTR amyloidosis is life expectancy. Most people with hATTR live between three and 15 years from the time they start experiencing symptoms.
Knowing that your life span may be limited can be very distressing. It’s important to realize that people who get treatment for hATTR have longer life expectancies. New treatments are always being developed, and these treatments could help you live longer and feel better.
Takeaway
Learn more about understanding life expectancy.
Steps to Living Well With hATTR Amyloidosis
Getting a diagnosis of hATTR can be overwhelming, so it’s helpful to understand the next steps that can help you live well with the disease.
Get a Second Opinion
If you’ve been diagnosed with hATTR amyloidosis, you likely have the condition. Still, getting a second opinion is very valuable (and often covered by insurance). Ask your healthcare provider for a referral for a second opinion, which can help you explore other treatment options for your condition.
Establish Multidisciplinary Care
Many body systems are impacted by hATTR amyloidosis, so you’ll need a multidisciplinary care team that will need to work together closely.
The healthcare providers who helped with your diagnosis can connect you with other physicians who have experience treating hATTR amyloidosis. A tool from the Amyloidosis Research Constortium (ARC) can help you find providers that have experience treating amyloidosis.
Seek Therapy
Many people with hATTR amyloidosis say that the disease changes the way they see themselves. In addition, 70% of people with the disease feel scared or anxious. Seeing a mental health professional or therapist—especially one who is experienced treating people with serious diseases—can help you process these feelings.
Talk With Your Family
If you have hATTR amyloidosis your siblings, children, and parents have a higher risk of developing the disease, which is passed genetically.
Most healthcare providers will recommend that all family members get genetic testing. Talk with a genetic counselor, then discuss your diagnosis with your family, so they can make informed choices about their own health.
It’s also important to discuss your symptoms and limitations with your family. People with hATTR amyloidosis often feel that their loved ones don’t understand what they’re going through. Being candid with your family can help ensure everyone has an understanding of the disease.
Treat Your Symptoms
Keep track of your symptoms. Once you’re familiar with the role hATTR amyloidosis is having on your health, you can find treatments that work for you. Examples of symptoms that can be helped by medical and lifestyle changes are:
Nighttime incontinence can be avoided by limiting nighttime drinks or setting an alarm to use the bathroom
Constipation can be treated with medication and increased fiber intake.
Erectile dysfunction can be treated with medication or pumps.
Experiment with massage, acupuncture, and other alternative therapies that may help your symptoms.
Consider Clinical Trials
New treatments for hATTR amyloidosis are always being developed. Clinical trials can help you access the latest potential treatments. ARC has a free tool called My Amyloidosis Pathfinder that can help you find clinical trials.
Define Your Priorities
Many people with hATTR amyloidosis find that they're not able to participate in the activities they used to enjoy, or socialize in the same way. You may have less stamina, so decide which activities, relationships, and goals are most important to you. Don't be afraid to prioritize those, while saying no to others.
See a Cardiologist
The cardiac symptoms of amyloidosis are the most dangerous, with the potential to be deadly. Find a cardiologist who is experienced at treating people with amyloidosis, and see them regularly.
Contact Your Insurance Company
Living with a chronic illness means a lot more medical bills. If you have insurance, contact the company and discuss your new diagnosis and coverage. Some insurance companies have representatives who are on hand to help you navigate the financial implications of a new illness.
If you don’t have insurance, see whether you’re able to apply for coverage through Medicare, Medicaid, or the health insurance marketplace. Treating amyloidosis can be expensive, so insurance is very important. Your hospital social worker may be able to help with this process.
Plan for End of Life
It’s possible to live for a decade or more with hATTR amyloidosis. However, many people—even those without a life-limiting disease—feel better knowing that they’ve planned for their end-of-life care.
Documents like living wills and advance directives tell your loved ones and doctors what you want at the end of your life and how you would like to be remembered if you die. These resources can help you get started.
hATTR Amyloidosis Support Groups
Talking with other people living with hATTR amyloidosis can be very helpful. Here’s where you can find hATTR amyloidosis support groups through the following links:
Summary
Being diagnosed with a serious illness like hATTR amyloidosis can be overwhelming. Taking the right next step can help you feel more in control of your disease. Learn about hATTR amyloidosis, find treatment providers you can trust, and treat symptoms that interfere with your life.
Also, connect with other patients through support groups, and get your affairs in order so you can minimize your stress and learn how to live well with amyloidosis.
Read the original article on Verywell Health.
