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Amyloidosis: My Father's Illness

Updated on July 28, 2017
Terrielynn1 profile image

Terrie has type 2 diabetes. She has a certificate in fitness and nutrition. She has a passion for helping others find their path to health.

What Is Amyloidosis?

Amyloidosis is a rare disease that occurs when a substance called amyloid protein builds up in the organs. This protein is usually produced in the bone marrow, and production is controlled by the brain. Excess protein can be deposited in any tissue or organ. It affects different organs in different people, but it typically affects the heart, kidneys, liver, spleen, nervous system, and digestive tract. Severe amyloidosis can lead to organ failure.

When my father was diagnosed it was described to us as being like a beeswax that goes through your body and builds up in tissue and organs. As a result, it makes it difficult for the body to function properly.

My Dad, before he had amyloidosis. This is one of my favourite pictures of him.
My Dad, before he had amyloidosis. This is one of my favourite pictures of him.

My Father's Symptoms

Some people may not experience any signs and symptoms of amyloidosis until it has reached an advanced stage. At first, my father was diagnosed with a tropical disease. After further testing, however, the doctors changed the diagnosis to secondary amyloidosis, which is now known as AA amyloidosis.

Here are the signs and symptoms he experienced:

  • Edema (swelling) of the ankles and legs.
  • Extreme fatigue - He could walk from his room to the kitchen only by hanging on the walls.
  • Shortness of breath due to amyloid in the left lung.
  • Numbness and tingling that progressed to pain in the hands and feet, and pain in the wrists.
  • Feeling full after eating only a small amount of food. Dad had lost, a significant amount of weight.
  • Enlarged tongue.
  • Skin changes such as thickening and discoloration. He also bruised easily.
  • The left side of his heart was enlarged where there was a buildup of amyloid protein.
  • Difficulty swallowing and occasional choking.
  • Feeling cold all the time, regardless of temperature, due to poor blood flow.

Amyloid was found in his liver and kidneys. After the diagnosis, he was put on dialysis. Later, amyloid was also found in his brain and bladder. He began experiencing intense pain, burning, and numbness in his feet and toes. He described that it felt like a hot poker that had been taken to his feet. He also experienced at least five heart attacks before he ultimately passed away.

If you or a family member have any of these symptoms, please see a doctor.

Please Consult Your Doctor

If you experience any of these signs or symptoms, please see your doctor. They may be associated with amyloidosis.

4 Types of Amyloidosis

The disease is caused by the buildup of an abnormal protein in the bone marrow and organs. There are four types of amyloidosis:

  1. Immunoglobulin light-chain (AL) amyloidosis - Previously known as primary amyloidosis. AL is the most common form of the disease. It can affect the heart, kidneys, skin, nerves and liver.
  2. AA amyloidosis - Previously known as secondary amyloidosis. Primarily affects the kidneys but occasionally also the digestive tract, liver, or heart. It occurs along with chronic infections or inflammatory disease. That is the type of amyloidosis my father had.
  3. Hereditary (familial) amyloidosis - An inherited disorder that often affects the liver, nerves, heart, and kidneys.
  4. Dialysis-related amyloidosis - Develops when proteins in the blood are deposited in the joints and tendons, causing pain. This type of Amyloid usually affects people who are on long-term dialysis.

Dad and I before amyloidosis. My grad Day.
Dad and I before amyloidosis. My grad Day.

My Father Was High-Risk

Anyone can develop amyloidosis, but some people are at higher risk than others. My father was in the high-risk group. Not only did he have secondary amyloid and heart attacks, but he was also a male over 50 who was on peritoneal dialysis.

Here are five known risk factors:

  • Age - Most people diagnosed with AL amyloidosis, which is the most common type, are age 50 or older. However, it can occur at a younger age, as well.
  • Gender - Nearly 70% of people with AL amyloidosis are men.
  • Having chronic infectious or inflammatory disease increases your risk for AA amyloidosis (secondary amyloidosis).
  • Family history - Some types of amyloidosis are hereditary.
  • Dialysis - Dialysis can't always remove large proteins from the blood. If you are on long-term dialysis, abnormal proteins can build up in the blood—and eventually be deposited, in the tissues and organs. That was more of a problem with older forms of dialysis; modern dialysis machines are better at removing large amounts of proteins.

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Amyloidosis Affects The Whole Family

Disease and illness is hard on everyone. Support is important.
Disease and illness is hard on everyone. Support is important. | Source

Complications

The complications of this disease depend on which organs are affected. Amyloidosis can damage your:

  • Kidneys - The kidneys are your body's natural filtering system. Damage to the organ reduces the body's ability to filter impurities, and it also causes the protein to leak from the blood into the urine.
  • Heart - Amyloid reduces your heart's ability to fill with blood between heart beats sufficiently. Less blood is pumped, with each beat, which causes shortness of breath. It can also disturb the heart's natural rhythm.
  • Nervous system - There may be pain, numbness, or tingling of the fingers, and lack of feeling or a burning sensation in the soles of the feet. If amyloid affects the nerves in the bowel, there can be alternating periods of constipation and diarrhea. Sometimes the disease can affect the nerves that control blood pressure, as well.
  • Skin - There can be skin discoloration, lesions, and cysts that look like a hard white substance that is trying to work its way out of the body. These lumps are described, as feeling like they are under pressure, and some appear to have a root. They can sometimes be extremely painful. Even though it's not, recommended, relieving the pressure can ease the pain. As an aside, none of my father's doctors had seen this type of complication before.

There maybe some additional complications that are not listed here. It depends on how long the patient lives with this condition.

My father had protein buildup in many of his organs, including the brain. Because so many of his organs were affected, an organ transplant was not an option for him.

Suggested Life Changes

Medications
Fluids & Food
Dialysis
Doctor-prescribed medications
Increase water intake
Peritoneal dialysis
Melatonin
Drink real juices
Hemodialysis
Herbal multivitamins
Herbal teas
 
Sometimes a shot can reduce urine proteins.
Fresh fruit & veggies
 
These treatments can help reduce the effect of proteins in the organs and bone marrow. It has increased some people's life span. Some have needed organ transplants. Please discuss treatment options with your doctor.

Important Information About Amyloidosis

  • Amyloidosis is a life-threatening illness. In addition to the doctor-prescribed treatments, certain lifestyle changes may be recommended.
  • Be aware of common symptoms, as early diagnosis can be critical to long-term outlook. A few common symptoms are tongue swelling, trouble swallowing, pain in the hands and feet, kidney issues, persistent infections, or heart problems. If you have any of these signs or symptoms or have a family history of the disease, please see your doctor.
  • Successful treatment requires that the patient works in close cooperation with a team of medical professionals.
  • The names of the various types of amyloidosis have changed. Primary and secondary amyloidosis are now called AL and AA amyloidosis, respectively.
  • In the past, the prognosis of this disease was only about 2-3 years. More recently, however, better treatment options have allowed people to live longer.
  • African-American men and men, in general, are at the greatest risk for this disease. About 70% of people with amyloid are men.
  • A laboratory test will show if amyloid is present in blood or bone marrow.
  • Sometimes, peritoneal dialysis is used to remove the extra protein from the body (unless the disease is the dialysis-related type).
  • Some patients experience depression and need encouragement to go outside or participate in their normal activities. Family support is very important.

Clinical Video on Amyloidosis

My purpose in writing this article is to raise awareness and share my father's story. The information presented here is not meant to replace medical advice or treatment.

Our Family's Experience

My father was diagnosed with secondary amyloidosis more than 20 years ago. We were told that he had only about three years to live.

I'll never forget that day. My youngest child was five years old. My mother told me the news, and her words hit me like a ton of bricks. "Terminal illness" was all I heard.

My father survived 11 years from that day. At the time of his diagnosis, the average prognosis was only 2-3 years. Little did the doctors know how determined he was to live. To this day I have not met anyone who lived with the disease as long as he did—although, from the research I've done, life expectancy has improved significantly in recent years.

I have nothing but respect for my mom. Her strength, love, and kindness were incredible. She took care of my dad right to the end, and she was with him when he passed at home.

Since my father's death, I have felt compelled to raise awareness of this rare disease. Early diagnosis and high-quality treatment are of the utmost importance. The sooner the patient is diagnosed and treated, the better the chance of having a longer and better quality of life. In addition to the medical care team, which is critical. The support of family and friends can also make a huge difference.

Two years before he passed. Notice the skin colour change. This was his favourite spot at twin peaks.
Two years before he passed. Notice the skin colour change. This was his favourite spot at twin peaks.

Family and Support

Supporting your loved one, in any and all possible ways, is imperative. Perhaps you can bring them to doctor appointments, bring food, or just come by for a visit. See if they need help with anything, or suggest an outing that will get them out of the house. It could be as simple as taking them out for coffee. Anything you can do will help—even if it's just a phone call to say hi.

If there are mobility issues, you can help find a service in your area that provides free rides to patients who need them.

Your loved one might experience depression due to the diagnosis and as a side effect of some of the medications. Even if they don't wish to talk about what they are going through, you can ask if there is anything you can do to help. The disease can cause severe pain as well as complete and total exhaustion. Low blood pressure can make everyday activities nearly impossible to do. Crossword puzzles and quizzes might help keep the mind busy and preserve cognitive function.

If your loved one needs help but won't accept it from you, please consider calling a support group in your area, or talk to the patient's doctor. I've noted a website for finding a support group, below.

Please help your loved one any way you can. Even if you live far away, they need your support.

Resources

  • "Amyloidosis." MayoClinic.org
  • AmyloidosisSupport.org - Here you will find complete medical information, information about support groups, and allow you to get from other patients, family members, and caregivers.
  • I watched an excellent medical program on A&E about a man undergoing an organ transplant due to amyloidosis in his liver.

© 2017 Terrie Lynn

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