Comments on: Surprise amyloidosis diagnosis leads to combined heart-liver transplant

By: pat jones

pat jones — Sat, 11 May 2013 20:08:06 +0000

My brother was just recently diagnosed with Amyloidosis.He has high blood pressure, congestive heart failure and high cholesterol issues. They want to do chemo and some type of steroid drug to treat him. Steroids builds up fluids in your body, so I question the intake of these drug because he has heart failure. The names of these drugs are,bortezomib(injection) or velcade,and dexamethasone. Can anyone please shade some light on these treatments they are wanting to do. Thanks

By: barren

barren — Wed, 08 May 2013 17:53:37 +0000

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By: susanashephard

susanashephard — Thu, 02 May 2013 00:21:11 +0000

In reply to Kate.

We are sorry to hear about your brother’s diagnosis. Unfortunately, we are unable to provide specific treatment recommendations through our blog site but please contact our Appointment Office in Scottsdale, Arizona if he is interested in a consultation. Here’s a link with all our contact information.http://www.mayoclinic.org/becomingpat-sct/appointments.html

By: Kate

Kate — Wed, 01 May 2013 23:01:27 +0000

My brother was recently diagnosed after presenting as periperal neuropathy. It took 2 months in the VA in Tucson before he was diagnosed with AL. They are recommending chemotherapy treatments. Does anyone know what we can do to help him. He also is suffering from the blood pressure dropping when he stands, so he can’t even stand and seems to be deteriorating exponentially. What hope do we have? He has no medical insurance, but is a veteran.

By: mayoclinic

mayoclinic — Sat, 23 Mar 2013 03:45:10 +0000

In reply to Biswaranjan Mishra.

Perhaps this link will be helpful: http://www.mayoclinic.org/amyloidosis/diagnosis.html.

Here is also a link for our international services: http://www.mayoclinic.org/international/.

By: Barb Pruss

Barb Pruss — Sat, 23 Mar 2013 03:12:01 +0000

Enjoyed your interesting history. I too have amyloidosis and had a kidney transplant at Mayo after being on dialyses for almost 3 years. Wonderful place with very dedicated people. They, with the help of my donor, certainly changed my life.

By: Biswaranjan Mishra

Biswaranjan Mishra — Fri, 22 Mar 2013 20:45:19 +0000

Hi,

I am from India, 35 years old, male. I also have the same condition since past 8-9 years. I had done multiple all round health checkups and no one ever indicated this could be/is a problem.

Could you please suggest me some tests ?

Best Regards,
Biswaranjan Mishra