Living with amyloidosis
Amyloidosis is a group of rare complicated diseases that result from the abnormal deposition of a protein, called amyloid, in various tissues of the body.
It is extremely important for treatment that these diseases are recognized and diagnosed correctly as early as possible.
Although awareness about amyloidosis has improved amongst the medical profession over the last decade many patients still experience symptoms and visit a number of specialists often for months before receiving a correct diagnosis.
Read:Seven Factors Predict a Delayed Diagnosis of Cardiac Amyloidosis. 2018 Bishop E1, Brown EE2, Fajardo J3, Barouch LA4, Judge DP3,4, Halushka MK1.
Receiving a diagnosis after a long delay usually brings feelings of relief but these can change quickly to ones of fear, grief and confusion on realising the gravity of a diagnosis of amyloidosis. This can be an extremely stressful time for both the patient and the partner.
The immediate time after diagnosis can be busy and exhausting. There may be consultations with a number of specialists and other members of the amyloidosis team and more tests, to determine the type of amyloidosis and the degree of organ damage before a treatment plan can be determined.
To add to the stress your phone will probably never stop as concerned friends and relatives ring for news. They will be relieved to hear the diagnosis is not cancer but will rarely have heard of amyloidosis.
Findings from the 2007 psychosocial arm (conducted by Pat Neely) of the first Australian national amyloidosis treatment trial for AL amyloidosis (ALLG MM8) led by Dr Peter Mollee, PAH amyloidosis Centre, Brisbane, showed that at diagnosis both patients and families experienced a range of feelings including:
These are normal feelings of grief but they can be extremely distressing and can cause misunderstanding between family members as everyone tries to deal with their own emotions.
Reading suggestion: Health-Related Quality of Life in Patients with AL amyloidosis.
The good news from the MM8 trial was that 6 months after diagnosis patients and families were feeling more in control of their lives. Why?
- Knowledge about amyloidosis and their own disease
- Trust in their medical team
- A treatment regime had been explained
But many patients and carers describe living with amyloidosis like being on a roller coaster, full of highs and lows.
Keep lines of communication open
Remember that a diagnosis of amyloidosis like any serious illness will change the life of not only the patient and the carer but all the family members in different ways.
- Whatever is happening in your life try to maintain open communication with your loved ones.
- Talk honestly and openly where possible about your feelings.
- Be honest about your diagnosis.
- If you are a partner or a close family member it is better to say something than nothing at all.
- Be honest. If you don’t know what to say then say so.
Communicating with your children
Children and teenagers often sense something is wrong. Adults can underestimate how well they can deal with gentle truth. Teenagers report that they often learn about their parent’s medical problems by overhearing phone conversations.
- Be honest about what is happening in language the young can understand.
- Listen to their questions and if you feel you cannot answer them ask someone else to do so. Perhaps a health professional.
- Younger children may start to blame themselves for their parent’s illness and feel very shut out and sad if no one explains in simple language what is happening. This may result in behaviour problems.
- Seek advice from your GP or your treatment team if you are concerned about your children.
- Try to maintain as normal household routine as possible.
Suggested reading. (Exchange the word amyloidosis for cancer).Talking to Kids About Cancer
Intimacy is integral to the quality of our lives. Intimacy involves feelings of liking or loving one or more people and may lead to physical intimacy.
Sexual relationships involve a complicated mixture of emotions, feelings and practical considerations which will be affected by biological, psychological and social changes.
A diagnosis of any type of amyloidosis will have an effect on the patient’s and partner’s sexuality. During the shock of the diagnosis, sexual relationships are usually the last thing on any one’s mind. However research in cancer care shows that sexuality is a key concern for many patients and their partners as they learn to live with the consequences of their disease.
In all types of amyloidosis organ and tissue damage and treatments side effects can impact on the patients physical wellbeing and therefore on sexual pleasure. This is particularly so in those with advanced neuropathy affecting feeling and mobility, advanced cardiac involvement and constant problems with diarrhoea and constipation.
Men who develop erectile dysfunction preventing them maintaining an erection, often feel they are letting their partner down. Some say they feel “half the man they once were”. This can lead to anger and depression.
Many couples negotiate through these times successfully but some couples will stop having any type of physical relationship because they are concerned this might make things worse. Without discussion this can lead to misunderstandings and added stress.
Although sex is often the way of expressing and experiencing intimacy, intimacy can be achieved by being physically and emotionally close without sex.
Your GP or treatment team are there to listen and will refer you to the correct health professionals. However it is often up to the patient to raise these issues as the subject of sexual intimacy may not be raised routinely.
Suggested reading: (replacing the word cancer with amyloidosis)
Accept Role Changes And Ask For Help
This may only be for a while however while role reversal is often necessary it often comes with emotional stress.
Open communication is important as is asking for help, as these changes will affect the lives of all those involved.
Learn About Your Disease
If you want to be involved in making informed decisions about your treatment you need to be able to ask your doctors questions. To be able to do this some knowledge of your type of amyloidosis and why it is affecting you the way it is affecting you, is vital.
Remember that no two patient’s disease is exactly alike even though the amyloidosis type may be the same.
- A booklet giving general very information about amyloidosis which they could read over and over again
- A list of up to date web sites information about amyloidosis which could be easily understood.
- Recognition and help for the emotional effects of diagnosis and treatment.
- Information about where to go for
These suggestions have all been acted upon and there is now information delivered in a number of formats.
The Leukaemia Foundation Australia funded the production of the booklet “Understanding Amyloidosis” containing very general information about the different types of amyloidosis. This booklet is now in its third reprint.
Go to Leukaemia Foundation Australia in page “Useful websites” for more information on LFA services.
- The internet gives access to much information but much of it is out of date of date and may not apply to you.
- Don’t spend too much time looking for new information about available treatments until you understand the basics of your own type of amyloidosis. Your medical team will help you understand whatever treatment is suggested.
- The internet can be very tiring and stressful. Go slowly.
The AAN has listed in the section “Useful web sites”well-regarded amyloidosis web sites which hopefully will be helpful in learning about your disease.
Communicating With Your Doctors and Asking Questions
Asking questions is an important part of learning about your own type of amyloidosis, however:
- Doctors are busy people. Some are excellent communicators while others are not.
- Your doctors and the treatment team are there to help you understand what is happening with their disease and treatment at any one time.
- Doctors vary in the way they deliver information.
- Much of it will be verbally but some will also give handouts or suggest web sites.
- You can ask your doctor‘s advice on where to find the best information.
- Patients being treated for AL amyloidosis are usually given in depth information about chemotherapy and other treatment drugs by a specialist nurse.
- Taking a friend or relative with you when you see your doctor. Two pairs of ears are better than one!
- Taking a pen and paper to write down any new names of treatments etc.
- If you wish to record the consultation it is better to check that he doctor is happy with this. Most will be.
- Write down the immediate things that are worrying you and the questions you would like to ask before you see the doctor. Hand over the list when you go into the consulting room.
- Have you treated many patients with amyloidosis?
- What sort of amyloidosis do i have?
- What proof is there that I have that type of amyloidosis?
- Why do you think the treatment you are suggesting will help me?
- What exactly is the treatment and what does it do?
- Will this slow my disease or cure it?
- Will the treatment make me sick?
- How have other patients found this treatment?
- How will I you know if the treatment is working and what are the tests that indicate this?
- What happens if the treatment does not work or upsets me?
- Why is there little treatment for my type of amyloidosis?
- Can I work?
- How can I help myself?
- What information about my disease do you recommend?
- Can I meet other patients with my type of amyloidosis?
- Because amyloidosis is still a group of rare diseases there will be specialists who will have treated very few people with amyloidosis.
- It is very important that the correct type of amyloidosis is diagnosed to enable the right treatment to be administered.
- If you are concerned that your doctor appears to know very little about amyloidosis you have every right to ask questions such as: “Have you treated many people with amyloidosis before me?”
- If you are still concerned you have every right to ask for a second opinion.
Go to page on “What does the AAN do” to find contact details for the 4 Australian amyloidosis centers.
- Over the last 20 years specific amyloidosis support has expanded across Australia.
- Support services offer practical and psychosocial help.
- The way patients and families use support services is a very individual decision and will vary as needs change throughout their illness.
- These services may be delivered face to face on a one to one or group basis.
- Those offering these services may be health professionals with or without knowledge of amyloidosis but qualified to offer support or counselling.
- Volunteers, usually people who have had experience with amyloidosis, may also offer support.
- Most hospitals will have social workers, specialized nurses or psychologists on staff.
If you wish to see any of these people, speak with your treatment team
- Psychological services are available in the community through Medicare.
To be eligible to receive these services under Medicare, a person must be referred by his or her GP and in some instances by another medical specialist.
- Some private health funds also offer a rebate depending on the level of cover.
- Organizations such as Myeloma Australia and Leukaemia Foundation Australia offer support services. See contact details in the section Useful web sites.
Talk with your doctors or a member of your treatment team if you feel you need support
- Support groups are a useful way of gaining support and information and sharing experiences with others. These groups can help you understand your own medical problems (remembering that everyone’s disease is unique) and can enable you to offer support to others.
- Some group meetings will have talks by health professionals about aspect of amyloidosis, diagnosis or treatment.
- Some patients and families enjoy support and education groups while others do not. There is no right or wrong about this.
- In the first few weeks after diagnosis patients and families are often busy, tired and confused. Many appear to prefer at this time one to one support from someone with knowledge about amyloidosis.
- Specific amyloidosis support and education services are offered by the Australian Amyloidosis Centers, the Leukaemia Foundation and Myeloma Queensland.
- The number of groups where patients and families support one another, often run by patients themselves, are growing around Australia.