AL diagnosed yesterday with Advanced Congestive Heart Failure Misdiagnosed x1 yr

[jmarnell4463]

Hello, thank you for approving my request to join. 

In Oct 2019 my husband had his first Afib hospitalization, he converted in 3 days and was sent home.  In Jan 2020 he went into Afib again and spent another 5 days in the hospital, but did not convert.  He was sent home on Afib medications and a note to stay out of work x3 months.  His diagnosis was congestive heart failure, fluid restriction, no salt diet.  COVID hit our area (small upstate --really upstate part of NY) and he was not allowed to return to work (Corrections Officer) he was fine and doing well until Oct 2020 when he had a terrible increase in edema.  He saw his cardiologist and he put him on diuretics, but it was still uncontrolled.  Cardio referred him to gastro for a liver workup as his liver markers on blood tests were elevated/concerning (bili was high).  the gastro put him on a drug that raised his potassium to 8!!! He spent 5 days in the ICU and another week in a step-down unit in late Nov 2020.  Since that time he has deteriorated quickly - 2 heart attacks, Afbi & Vtac, he had an ICD placed 8 February 2021 and very very uncontrolled edema. He is currently an inpatient at Strong Memorial Hospital in Rochester NY x1 week after being transferred from our small hospital in Watertown, NY x1 week. This is his 6th hospitalization since November 2020!!!   

They just diagnosed him with AL Amyloidosis.  He had a cardiac MRI in late Jan 2021 which showed thickening of the heart.  A heart biopsy was done this past Tuesday and confirmed AL yesterday.  A bone marrow biopsy is being done today, but they are positive that he has Multiple Myeloma as well.   

From everything I am reading, his prognosis, due to advanced heart failure is not good.  I am wondering if there is anyone in this forum, that had advanced cardiac involvement and was misdiagnosed for over 1 year, and had good outcomes with treatment.

My husband survived non-Hodkins Lymphoma 20 years ago, he's a fighter, but I am fearful that the AL is far too advanced...

thank you for any insight.

[freecurry]

Hi. I’m so sorry to hear of your husband’s diagnosis and to learn what a torrid time you’ve both had over the past year or so.
I felt compelled to respond to your post as I feel an affinity for you and your circumstances.
My husband started getting gastro-intestinal symptoms well over a year ago, just after we’d moved a few hundred miles to be nearer our family and before COVID locked everything down in the UK. He had a gastric biopsy in March last year which we were told showed “nothing worrying”; he had some other tests and was given medication to help his symptoms.  Late summer he started with symptoms of heart failure and when he saw a Cardiologist at the end of November the cardiologist told him the biopsy in March had shown Amyloidosis and asked him why he’d not been treated for it - what a shock! Subsequently he’s had various further tests and recently spent time at the National Amyloidosis Centre in London; we know now that he has AL Amyloidosis with cardiac involvement but have not yet received the cardiac MRI results so don’t yet know how advanced this is.
This week he’s finally seen a Haematologist who carried out a bone marrow biopsy today to check for Myeloma and he starts treatment on Monday.
So I’m afraid I can’t answer your question regarding the potential outcomes of treatment, I wish that I could. The similarities in our husband’s respective circumstances, if not in all of the medical details, were what impelled me to respond and so please know that I’m thinking of you both and hoping that things are not as bleak as you may fear.

[Kayleigh]

Hi there my husband also has advanced heart failure caused by amyloidosis and is about to start treatment. It is not yet sure how he will respond or if they can do anything for him.  How is your husband now? I hope he is doing well 🙏

[Birchman]

Are you being fair jmarnell4463? I am certainly no expert, but I don't think Amyloidosis is easy to diagnose and is only found after other problems have been found. I was diagnosed with cardiac problems in August 2020. Amyloidosis was not suspected until some months later. I don't this I was misdiagnosed.

P.S While I am writing this, l  am lying in a hospital bed waiting for a bone marrow  biopsy.

[deBurca]

Hi Jmarnell. I presented with suspected heart issues in August of 2017. I was tentatively diagnosed with AL Amyloidosis with cardiac and renal involvement three days later with the diagnosis confirmed the following week following a biopsy. Over the next 12 months my health deteriorated at an ever increasing speed. I was confined to a wheelchair for a time as I did not have the breath to walk more than a couple of steps due to the extent of heart failure and eventually was admitted to a hospice and was told I only had a couple of weeks left at best. Fortunately I stabilised and began a slow road to recovery. Many different treatments were tried and I am now back to a relatively normal life. I am still limited in how much I can exert myself but things are very positive.
So while I was not misdiagnosed my condition was similar in many ways to what you described, advanced heart failure, thickening of the heart wall etc. I have had a positive outcome and I hope the same will be said of your husband. Research into, and treatment of Amyloidosis is getting better at a very fast pace.