We’re about to leave home Eureka ca. for Stanford hospital . They have an Amyloidosis treatment center there . Tomorrow I’m getting a heart tissue biopsy test and then a bone marrow test this week while we’re there . About to step off into the big unknown this morning. Looking forward to figuring out which type I have and where I have it . Then get treatment going . Hopefully treatment can be done locally in Humboldt co .

Heart biopsy procedure sucks but only last a few minutes. I can’t believe they do it while patient is awake, so yes it sucks. The bone marrow biopsy is piece of cake. My brother did faint however soon as he saw the size of the needle they use to draw marrow out of your hip. Good luck going forward, we are here for you , many of us.

Good afternoon MikeHess!
Here’s what my wATTR-CM team has prescribed for gastro issues:

One 20mg Omeprazole capsule daily (before food in morning) to control acid
Morton’s Lite Salt

With respect to breathing attacks I used to have many each day. My primary cardiologist suspected arrhythmia and its resulting AFib were the culprits. He knew nothing about amyloidosis so I was treated within his “stovepipe” with the insertion of an arrhythmia loop recorder in my left upper chest. This device was connected to a Bluetooth monitor that contacted the doctor’s office when (a) an irregular AFib event was triggered and (b) on a regular summary basis for evaluation.
Later, my amyloidosis team also prescribed an albuterol inhaler to control breathing spasms.

I was diagnosed with “wild” type ATTR (transthyretin amyloidosis) with primary attack on the heart (cardiomyopathy) or wATTR-CM. The “wild” just means that the disease is a function of aging. There’s another type of this amyloidosis that’s a function of heredity or hATTR. Your amyloidosis team should send your test results to a specialty center, such as Mayo Clinic, to determine if you are “w” or “h”. If heredity is confirmed please keep your children in the loop.

If you don’t have a amyloidosis team you should find one. My experience has been that these may be found in university teaching hospitals. Mayo Clinic, Boston Medical Center, University of California (Irvine, San Diego, Los Angeles, etc.) and the like. These teams usually have most if not all of the medical disciplines you may need, Each one trained in the diagnosis and treatment of amyloidosis strains. Best of luck!

We’ve been slowly modifying our food to include more whole grain, vegetables, and a reduction in meat. We now tend to eat more fish, turkey, and experiment a bit. Tofu, brown Jasmine rice, bulgar, quinoa, and the like.

Sorry to be so long-winded.

Keep putting one foot in front of the other!

You may want to invest in some pull ups parentgiving.com I think has the best ones. No one really wants to wear a pull up but no one really wants to pee themselves and be embarrassed.

As far as the cooking… cut out the frying. Use your oven instead. Of course fried food is yummy but not healthy. Roasting or oven baking is much better for you.

Good luck on your journey. Kick some amyloid butt!