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Diagnosed with AL Amyloidosis. What can I expect?
Blood Cancers & Disorders | Last Active: Mar 28 1:00pm | Replies (44)Comment receiving replies
My mother has been ill with a variety of issues that no one could figure out for the last 3 years. She has shortness of breathe abdominal pain severe abdominal swelling diarrhea and Constipation pins and needles with cramping of her hands swelling of her feet and ankles afib plural effusion swelling of her tongue trouble swallowing extreme weight loss fatigue weakness and loss of appetite. She has been hospitalized so many times in the last year and they kept getting closer and closer in time until finally a kidney dr was called in and had a 24 hr urine test done that tested her protein in her urine followed by a kidney biopsy. She was diagnosed with AL Amyloidosis with chf acute respiratory failure and a whole list of other issues. Consulted with an oncologist who said that my mother was too weak for her to ethically even consider any treatment option for her. Today she is getting a peg tube put in in hopes that we can assist her nutritional needs she is suffering from severe malnutrition. She is in a rehab and is very weak we are trying to strengthen her up she is on oxygen 24 hours a day. What is her her realistic prognosis since no one will give me a straight answer. I am putting her affairs in order and I am her caretaker and just want an honost answer as what I need to prepare for it feels like I am never going to be able to bring her home with even a drop of quality of life she has not even been even able to get the bone marrow biopsy to confirm if multiple Myeloma is the main cause which is what her drs feal that it is!!
Replies to "My mother has been ill with a variety of issues that no one could figure out..."
I am sorry to hear about your mother and fully understand your concern and worry. I am not a doctor and what I know about the disease I have learned in the past four months. What you are asking for none of us are able to answer. I can tell you that a late diagnosis is not a good thing. One question I have is has your mother had an echocardiogram? If she has had one your cardiologist should be able too provide you with a prognosis. My wife has AL and the number one problem I have had is the lack of communication between all her doctors. If you do not educate yourself on this disease you are not able to understand a lot of what is being said. It has multiple implications and organ involvement any one of which could fail if not caught early enough. It also sounds like you may have already got your answer and I would suggest that you spread the love with not only mom but all your family, and know that god is watching over you. These are hard times for you and your family and they will need a strong loving person like yourself.
@evaxmas, I don't have any experience to share with you. I want to say that I am aware of how difficult it can be for the caregiver to handle the stress and uncertainty. Do you have others who are available to support you during this difficult time? I want you to know that there is a Caregivers Group on Mayo Connect. https://connect.mayoclinic.org/group/caregivers/
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@evaxmas, welcome to Connect. You may notice I combined your discussion with an existing one titled, "diagnosed with AL amyloidosis, what can I expect?" I did this so you could meet a few of the other members who have posted about facing the diagnosis of amyloidosis. If you are responding by email you can click on VIEW & REPLY to see where your post is and to read through some of the other posts made by members on this similar topic. @evaxmas, is there a specific part of your mother's diagnosis that you would like the other members to comment on? You may also want to read through the following discussions on both AL amyloidosis and
Multiple Myeloma:
- https://connect.mayoclinic.org/discussion/what-a-shocker/
- https://connect.mayoclinic.org/discussion/treatment-for-amyloidosis-and-multiple-mylemoa/