Diagnosed with AL Amyloidosis. What can I expect?

Hi Colleen, the link you sent does not open for some reason. Could you confirm the link and resend.

Thanks

@bob100, I am going to tag @colleenyoung so that she will get a noticication that you were speaking to her.
I hope that you and your wife are learning more about her condition and treatment options as you proceed through thre testing.

The ONLY symptom I had that brought me to a doctor was that I had the skin lesion. I don’t know if any of my other symptoms are for sure related to AL Amyloidosis because I’ve had them for so long and this is a new diagnosis. But I’ve had protein in my urine for a while but it’s getting higher. And I’m not sure if this is related, but one of my kidneys has shown up atrophied on an MRI of my lumbar spine. I had them checked out after that and the atrophied kidney is functioning. I just can’t remember if it was at 100%. I’m thinking it was fine since I didn’t get any treatment. This has been 2 years ago. I was diagnosed with AL Amyloidosis less than a month ago.

Thank you. I have been educating myself daily on AL and its affect on the body and organs. I like to use an open feather pillow in a small room with a fan on to demonstrate what happens with the amyloid. The feathers rise and deposit over every surface eventually plugging up everything they fall on. Amyloid in its self is not harmful like a cancer cell because it does not cling together and form cancerous tumors. Rather, it deposits on and in various organs in the body. Thus, if caught soon enough can be stopped and in time slowly removed from those same organs. Sherry was diagnosed with AL back in January. It was a shock for both of us because we thought it was just kidney failure which was bad enough. We later found out it was Amyloidosis AL confirmed by kidney and bone marrow biopsy’s. Reading about this disease scared me too the bone and I realized that a lot of the data I was reading was not recent and In some cases years old! Don’t make the same mistake I did, make sue you only read current data because you will be misled. What I found is this disease is very manageable when diagnosed early. Sherry lost her kidneys, but by the grace of god her heart was normal. Because of the time involved to get to that point you end up with a lot of time to worry and unfortunately be misinformed reading about the disease if not careful. My advice is that one family member do the research on the disease and inform the person affected and family members. It’s my opinion that because of all the misinformation on the net regarding this disease a lot of heart ache can be caused

@bob100,
Thanks for sharing what you have learned through your own research. You are correct in advocating for patients to educate ourselves about our conditions. And searching the internet can be a wonderful source of information - as long as we go to reputable and respected sources, and are aware of outdated information.
I also encourage patients to take a loved one or a responsible individual withi them to appointments as an extra set of ears, and an additional voice.
Does xwife continue on dialysis? Does the AL diagnosis require any extra dialysis concerns/complications?

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!!

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!!

Thank you! Sherry was forgotten by the vascular doctor and as a result will not have the graft put in until the 27th of this month. It will take an additional 2 weeks to heal before they can use. Her kidney function is around 10% now and we have an appointment with her kidney doctor this Wednesday to find out what too do. It’s my understanding 10% is the bottom and dialysis is required. There are so many doctors involved with this disease that it’s hard to stay on top of them.

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!!