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Low blood pressure
Fatigue
Dizziness/Light-headedness
Feelings of the heart racing or skipping beats
Swelling to feet/legs/abdomen
A number of tests may be performed to diagnosis cardiac amyloidosis such as ECG, ECHO, cardiac CT scan, coronary angiogram, MRI, PET scan or cardiac biopsy.
In most cases, cardiac amyloidosis is caused by one of two abnormal proteins: light-chain or transthyretin.
Light chain amyloidosis
Plasma cells are located in the bone marrow and produce antibodies for the immune system. Antibodies are made up of heavy and light chains. When the plasma cell becomes malignant it produces too many light chains for that antibody.
This can cause a few different scenarios:
Monoclonal gammopathy of undetermined significance (MGUS) when abnormal plasma cells are in a small part of bone marrow and removed through the urine.
Myeloma when abnormal plasma cells take up a bigger area of the bone marrow and can cause high calcium levels (hypercalcemia), low hemoglobin (anemia), kidney dysfunction, and bone damage.
Light chain (AL) amyloidosis: Abnormal plasma cells produce light chains that fold abnormally and bind together forming amyloid particles. These amyloid particles are found in the blood and can be deposited into the heart or other organs.
AL amyloidosis is the most commonly diagnosed form of systemic amyloidosis, generally affecting people between the ages of 40-85 years.
Transthyretin amyloidosis
Transthyretin is a protein produced by the liver. Some transthyretins can fold abnormally and become amyloid deposits. There are two types of transthyretin (ATTR) amyloidosis: wild-type ATTR and mutant ATTR.
Wild-type can create amyloid deposits over several years and is more common in people over the age of 70 years. Amyloid deposits form primarily in the heart, veins and arteries, and soft tissues.
In mutant type ATTR, people are born with an abnormal transthyretin gene leading to more rapid amyloid deposition. The heart and nerves are the most common sites for amyloid deposits in mutant ATTR.
RELATIONSHIPS
Although the emotional impact of living with a chronic disease differs from one person to another, it is often quite substantial. Those who are not living with heart failure may not fully understand the challenges of living with the condition. Supportive relationships can be critical to managing health. The support we receive from those who are close to us can be a powerful force for well-being. Often, to form or strengthen supportive relationships, we must learn how to describe our needs and ask for help.
ASKING FOR HELP
It can be very difficult to ask for help or to accept help when it is offered.
We may be more comfortable offering help than receiving it, or we may worry that we are asking too much and becoming a burden on others. We may also feel hesitant because of disappointing responses we have received in the past when we needed help.
Try these simple strategies to make it easier for people to support you:
Have a mental list of practical things that others can do that would be useful to you. The more specific the better.
When someone asks if there is anything they can do, be ready with a specific request like: “I need someone to stay with my elderly father between 1-3 pm on Thursday afternoon so that I can go to an appointment. Is that possible for you?”
Always be clear and detailed. Clarity will enable the person offering to be truly helpful while making you feel supported.
With practice, learning how to ask for and accept help gets easier, and can even become empowering.
GIVING HELP AND SUPPORT
If you are a caregiver or someone who provides support, remember that emotional support is just as important as practical help. Listening well and doing your best to understand someone’s needs can be even more helpful than having the right answers (especially for problems that don’t have ready answers!). If you listen well, your loved one is better able to communicate what they need, even if it is just a hug.
SEX AND INTIMACY
Sexual relations and intimacy are important to your well-being and relationships. You are not alone in thinking about sex and heart failure. In fact, about 2 out of every 3 people living with heart failure experience some issue with sex and intimacy. Some of the issues you may encounter are likely as a result of reduced desire and difficulty in engaging in different sexual activities. Sexual activity is not dangerous to your heart. But if you are living with heart failure, sexual activity ― like all your activities ― may need a bit of planning and careful consideration. If you can walk at a reasonable speed on level ground or climb a set of 20 stairs, then sexual activity is unlikely to affect your heart. Do not have sex if you are unwell, have chest pain or are very short of breath.
STRATEGIES FOR SAFE AND POSITIVE SEXUAL RELATIONS
As you feel better and want to enjoy sex and intimacy in your life, here are strategies you can use to address concerns and have a positive sexual experience.
Have an open conversation with your partner about your concerns, needs and expectations. Talk together about how to approach sex.
Start with building intimacy and recognize it may take time to return to your previous sexual activities.
Keep an open mind, show affection, and build connections for more intimate activities.
Use foreplay to help your heart get used to the increased activity level of intercourse.
Choose less strenuous positions, such as lying on the bottom or lying side-by-side.
Avoid positions that require you to support your weight with your arms.
Talk to your health care providers about sex as part of your overall health ― and don’t hesitate to ask for advice on managing any concerns.
If you experience chest pain during sexual activity, stop. Rest and recover. If the chest pain persists more than 15 minutes, call 9-1-1.
COMMON SEXUAL PROBLEMS RELATED TO HEART CONDITIONS
Your heart condition and your medications may affect sexual desire and relationships in a number of ways.
Loss of interest or desire for sex.
Problems achieving or maintaining an erection.
Difficulty achieving orgasm.
Pain or discomfort during intercourse.
Medications such as beta blockers may cause sexual dysfunction.
Remember that anxiety and stress about your condition and your health may also affect your physical health, relationships and hormones which can reduce sexual desire and function. Talk about your concerns and work with your partner on strategies for a positive sexual experience.
TALK TO YOUR HEALTH CARE PROVIDERS
It can be difficult and sometimes uncomfortable to bring up your sexual health with your care team. Your health care providers may not ask directly about sex during your appointments.
Here are some ways to start the discussion:
“I read somewhere that my heart failure can get in the way of having sex.”
“I want to be intimate with my partner but I’m scared about what will happen to my heart.”
“My partner is worried about us having sex and that it’s not safe for my heart.”
“Is it safe to use Viagra if I’m having trouble with getting or keeping an erection?”
SLEEP
Heart Failure and Sleep
Sleep issues and heart failure may be related. For example, if you have heart failure, you’re more likely to experience insomnia. Similarly, sleep issues such as obstructive sleep apnea (OSA) and insomnia can exacerbate heart failure symptoms.
Whether your heart is healthy or not, getting a good night’s sleep is essential. Rest is beneficial to your heart function, energy levels, cognitive abilities, and overall health. You may be able to relieve some of the strain on your heart if you can address any sleep problems you are experiencing.
SLEEP ISSUES CAUSED BY HEART FAILURE
Heart failure symptoms can disrupt your sleep, for example:
Chest pain or discomfort which make it difficult to fall or stay asleep
Shortness of breath or difficulty breathing while lying down
Having to get up frequently in the middle of the night to pee.
If you are upright (standing or sitting) most of the day, additional fluid may collect in your legs and feet. When you lay down to sleep, this fluid can then travel up into your chest, causing your lungs and airways to constrict and making it difficult to breathe. To get rid of excess fluid, your doctor may prescribe diuretics. However, these medications continue to operate while you sleep, which may cause you to wake up throughout the night to pee.
HOW CAN I IMPROVE MY SLEEP?
There is a strong association between difficulty falling or staying asleep and the risk of developing heart failure. The linkage is not fully understood, but one reason could be that sleeplessness activates the body’s stress response, which over time can weaken the heart.
You can help ensure a good night’s sleep by doing the following:
Go to sleep and wake up at the same time daily.
Help set your “body clock” by following a consistent schedule. Our bodies naturally follow a circadian rhythm, which regulates many biological functions within our bodies, including the release of important hormones into our bloodstream.
Establish a bedtime routine.
Following a routine, such as brushing your teeth, taking a warm bath, meditating, or reading a book, allows you to wind down in the evening and get a restful night’s sleep. To reduce stress before going to bed, practice mindfulness or do some light stretches.
Meditate or practice mindfulness.
Meditating or practicing mindfulness may help you relax and find a sense of calm. You can do this while sitting or lying down, even do a body scan to relax and ready yourself for sleep.
Limit sleep disrupting beverages.
Avoid caffeine in the afternoon and evening. Abstain from alcohol entirely.
Go to bed when you feel drowsy.
Recognize your sleepiness signals and use them as a cue to turn off the lights and go to bed, even if it doesn’t seem like the conventional time to do so.
Exercise on a regular basis.
Daily exercise can help you fall asleep faster and sleep better. However, exercising too close to bedtime can make it difficult to sleep – try not to exercise for at least three hours before going to bed.
Get natural light each and every day
Spending time outside during the day can help you sleep better at night. A 10-minute break outside in the fresh air can make a significant difference.