UK Gill Heart & Vascular Institute offers comprehensive care for cardiac amyloidosis in the Bluegrass region, including treatment options unavailable anywhere else in Kentucky.
Amyloidosis is a rare disorder involving the buildup of a specific protein known as an amyloid protein. The abnormal protein deposits can develop in either one area or several body parts. When amyloid deposits build up in the heart, it’s called cardiac amyloidosis. The deposits make the heart muscle stiff, which can lead to heart failure. The deposits might also interfere with electrical signals in the heart.
There are more than 100 variations of amyloidosis. All are rare, but the two most common types of cardiac amyloidosis are:
- Light chain amyloidosis, also known as AL amyloidosis: Light chains help defend against viruses and bacteria. They are made by cells in your bone marrow. When too many light chains are produced, they can form deposits in your organs.
- Transthyretin amyloidosis, also known as ATTR amyloidosis: In ATTR amyloidosis, a protein that circulates in the blood to carry thyroid hormone and vitamin A becomes misfolded, leading to amyloid deposits. There are two subtypes of ATTR amyloidosis: hereditary and wild-type. Hereditary amyloidosis is caused by a gene mutation, and wild-type amyloidosis is most commonly seen in men 65 or older.
In addition to providing extensive cardiac treatment options, our cardiac amyloidosis experts partner with specialists in several disciplines. These include:
- Hematology
- Nephrology
- Pulmonology
- Neurology
These collaborations ensure patients with cardiac amyloidosis receive the multidisciplinary care they need to fully address all aspects of the condition.
Symptoms of cardiac amyloidosis can range from mild to severe. Additionally, they may mimic symptoms of other conditions, including cardiomyopathy, diabetes, heart failure or high blood pressure. Left untreated, cardiac amyloidosis can cause heart failure.
Cardiac amyloidosis symptoms may include:
- Abdominal bloating
- Abnormal heart rhythms, including atrial fibrillation
- Cognitive issues, including confusion or difficulty thinking clearly
- Coughing or wheezing that worsens when lying down
- Dizziness or fainting, also called presyncope and syncope
- Enlarged veins in the neck
- Excessive urination, especially at night
- Fatigue, or extreme tiredness
- Increased heart rate
- Liver issues
- Nausea
- Numbness or tingling in the feet or hands
- Shortness of breath, also called dyspnea
- Sleep issues
- Sudden weight changes
- Swelling in the ankles, feet and legs, also called edema
- Symptoms of carpal tunnel syndrome
The prognosis of cardiac amyloidosis depends on the type and how early the condition is diagnosed and treated. Typically, ATTR amyloidosis presents later in life and progresses slowly. AL amyloidosis often develops at a younger age and progresses much more quickly. Generally, the earlier the condition is diagnosed and treated, the better the prognosis.
It isn’t possible to prevent cardiac amyloidosis. However, treatment can help manage symptoms and may slow the condition’s progression.
Risk factors for cardiac amyloidosis include:
- Having a family history of cardiac amyloidosis or heart failure
- Being male
- Being 50 or older
Some types of cardiac amyloidosis are more common among people of Afro-Caribbean, Irish, Japanese, Portuguese or Swedish descent.
Your first visit to UK Gill Heart & Vascular Institute’s advanced heart failure program will last about 40 minutes. In addition to meeting with your physician, you may also meet other team members. These may include a nurse coordinator, nurse practitioner and pharmacist. During your visit, you’ll discuss any symptoms you’ve noticed. Your cardiologist also will review your imaging and other test results. If you have not already had an echocardiogram, cardiopulmonary exercise test or other necessary testing, your team will order them for you.
During your visit, your team will provide details about:
- How heart failure may affect your life
- How to properly manage the disease with medicines and lifestyle changes
- Available treatment options
- If you have questions about heart failure, your team will answer them. They’ll also guide you toward resources to further understand and manage the condition.
To make the most of your appointment, take the following steps:
- Ask a loved one to join you. A family member or friend can help take notes or remember questions you need to ask of your care team.
- Bring your insurance plan information. UK HealthCare accepts most insurance providers. A member of our team can help confirm your coverage, and financial assistance is available if needed.
- Write down all the medicines or supplements you take, along with the dosage and frequency. Better yet, bring your medicine bottles to your appointment.
- Wear comfortable clothes and shoes. Though you won’t undergo any imaging exams at your first visit, you will have to walk a bit to reach your appointment.
Where we are located
The UK Gill Heart & Vascular Institute is located at 800 Rose St. in Pavilion G, on the first floor of UK Albert B. Chandler Hospital. We will mail you a map and directions when your appointment is scheduled.
Patient drop-off
Patients can be dropped off in front of the main entrance to Albert B. Chandler Hospital at 1000 S. Limestone. If you are dropped off at the main entrance, you’ll enter the revolving doors on the ground floor of the hospital. Take the main stairs just to the left (or elevator across the atrium) to the first floor of Pavilion A.
After climbing the stairs or taking the elevator, turn left. You’ll pass the Kentucky Wall and Kentucky Children’s Hospital on your right. Continue to the end of the hall until it comes to a T shape. Turn left and the Gill clinic entrance is across from an open area housing the organ donor wall.
Parking
It is easiest to park in the UK HealthCare Parking Garage, across from the hospital at 110 Transcript Ave.
There are two paths from this garage to the Gill clinic:
- You may take the free shuttle from Level A of the parking garage. You’ll exit the shuttle at the Pavilion A/ Pavilion G stop in front of the main entrance to the hospital. After climbing the stairs or taking the elevator, turn left. You’ll pass the Kentucky Wall and Kentucky Children’s Hospital on your right. Continue to the end of the hall until it comes to a T shape. Turn left and the Gill clinic entrance is across from an open area housing the organ donor wall.
- From Level C of the parking garage you may walk or take a golf cart across the pedway to the first floor of Pavilion A. Turn left past the help desk and walk away from the dining hall. You’ll pass the Kentucky Wall and Kentucky Children’s Hospital on your right. Continue to the end of the hall until it comes to a T shape. Turn left and the Gill clinic entrance is across from an open area housing the organ donor wall.
If you need help finding your way, information desks are located inside the main entrances to Pavilion A, both on the ground floor and at the end of the pedway on the first floor. You may also call the information desk at 859-323-5816.
By turning to UK Gill Heart & Vascular Institute’s advanced heart failure program, you have access to ongoing clinical trials. At any given time, we’re researching new devices, medications or interventions to help shape the future of heart failure care. If you’re eligible for a clinical trial, your care team will notify you. Team members then educate you on the purpose, methods and length of the trial, so you can determine whether you would like to be part of the trial. Participation in all clinical trials is voluntary.