Author Topic: Newly diagnosed with AL amyloidosis with cardiac involvement  (Read 537 times)

Kayleigh

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  • Posts: 3
  • Reason for joining: My husband has amyloidosis
  • Diagnosed: Diagnosed in July 2021
Hi there and thank you for accepting me into this forum.

My husband is newly diagnosed with al amyloidosis after suffering with horrific fluid retention, shortness of breath and symptoms of heart failure. This started in February this year and he got his diagnosis in July. I should add he is currently in the USA im in the UK temporarily and will be back there shortly.

I think his diagnosis seems to have happened fairly quickly and he was started in chemo last week. He only received one dose via injection and when he went for his 2nd dose they said they couldn't do it because his fluid retention was so bad.

Im out of my mind with worry because he obviously needs the chemo to fight the amyloidosis but i am scared his heart just won't be able to take it. He is now on heavy dose diuretics to shift the water and i presume they will restart the chemo if the fluid is controlled. He was losing the water fairly good until the chemo which seems to stop the water pills working.

He has an appointment at vanderbilt about a stem cell transplant on Thursday also but the heart issues might prevent this happening.

My worries and questions are has anyone had horrific heart failure symptoms and managed to get treatment? Has anyone reversed the effects of amyloidosis on the heart so reversed the heart failure symptoms? His bp is also showing low but some of the reason for this is entresto a med for heart failure.

Its so hard at the moment to understand this he is only 48 and im so terrified

Thank you for all the support and advice on here this page is amazing

Kayleigh
« Last Edit: August 10, 2021, 12:18:01 pm by Kayleigh »
Kayleigh

Birchman

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  • Posts: 5
  • Reason for joining: Patient with AL Amyloidosis
  • Diagnosed: Initial diagnosis March 2021 - AL diagnosis June 2021
Re: Newly diagnosed with AL amyloidosis with cardiac involvement
« Reply #1 on: October 06, 2021, 09:56:56 am »
Hi Kayleigh
I had very similar symptoms to your husband.
During most of 2020, I had a shortness of breath and swollen legs. I contacted my GP in April 2020, but nothing was done except check to see if I had covid! In August 2020 I contacted my GP again - I thought my COPD had become worse. My GP saw me and sent me for a chest-xray. This showed oedema on my lungs and the cardiac team said I had chronic heart disease. I was quickly in my local hospital where I was given twice daily injections of Furosemide. This got rid of the pulmonary oedema and reduced the peripheral oedema.
I was taking various diuretics under the control of the cardiac department. It wasn`t till February 2021 that I was sent to Papworth for an MRI scan - this suggested Amyloidoisis.
I was then sent to the Royal Free Hospital for numerous specialist scans. These showed AL  Amyloidosis.
I started Chemo in August 2021. This has not been without incident! I have been in hospital three times. This is because my kidneys and heart need to be strong enough for the chemo. I have suffered various side-effects, but hope my body is getting used to the drugs. I am now in the middle of cycle 2.
If you any questions, then please ask me