Husband just diagnosed with AL Amyloidosis (Heart, Liver) - what to expect

[IonaSky]

Hi All,
This is my first post.  My husband was diagnosed with AL Amyloidosis last week after 2 months of tests and differing diagnoses from pancreatic cancer to auto-immune liver disease. He is really ill and the symptoms have accelerated over the last couple of weeks. His symptoms are, at the moment
- Cardiac: BNP Pro 6300, he can barely walk now or breathe, his pulse rate is ~100 bpm resting and goes up to ~150 on exertion and he has ascites.
- Liver: Cirrhosis with  jaundice. He has been asked to stop the diuretics as his liver function has deteriorated. We have an appointment tomorrow.
- Now an appointment at the dental hospital.

Although we are now in the “system” awaiting the start of treatment and referral to NAC, the prognosis feels grim and I am terrified. We have 2 kids aged 12 and 10.

Thanks for reading.

[freecurry]

My thoughts are with you and your family.
We were in a similar situation about 18 months ago, my husband was really ill and most of what I read about AL Amyloidosis, when we finally got a diagnosis, seemed incredibly negative.
Being able to read, both on here and on social media, about the experiences of others living with this disease, helped us to find some hope. You do now have a diagnosis and are in touch with the right experts it seems. In our case treatment initially felt as though it was making things even worse,  but gradually they got much better.
I can't promise you that things will get back to how they once we're but there is hope that they'll get better.  Do keep chasing for that NAC  appointment.
Take care.

[Richardpreston]

Hi IonaSky.   I was eventually diagnosed in 2010.  I remember my first visit to the NAC and the conversation with Prof Gilmore.  He was quite clear about the severity of Amyloidosis but gave immediate confidence in the treatment available.  That was twelve years ago and I am still here chirping away - and there are much better treatments available now.  There have been some very difficult times but we got through those and I will not get back to full fitness so we have adjusted accordingly.  The we is me, Kathy my wife and two sons - now adult.  Their unflagging support has been instrumental in my recovery - physical and psychologically.   The treatment is the main thing but a bit of good luck always helps - Good Luck.