This post is not about traveling, but I thought I would let anyone who subscribes by email to our blog know what has happened in the last couple of months.
After returning home, it took almost a month to get a firm diagnosis and appointments at OHSU to treat David's Cardiac AL Amyloidosis.
We had some great news this week. Bio markers for David's disease have improved. David has had 4 weekly infusions of a chemo cocktail: CyBorD. He also takes an antiviral medication and Doxycycline daily. At the 4th Infusion they rechecked his light chain production. Normal is below 26.mg/L. His has fallen from 974 to 110. The Cardiac AL Amyloidosis has no cure, only a treatment. Decreasing the attack on his heart by these little critters (Amyloid) is very encouraging. The Amyloidosis support group website has a short entertaining animated video that explains this terrible disease. https://vimeo.com/3358025 David now has more of those little men with big hammers!!!! The bio markers for the heart damage have remained the same, but David is so positive about living with this "new normal". We try to walk everyday, but its very short and slow. No more ultras, but staying healthy and fit for years is helping him fight this disease.
During my endless hours of research into this disease I found that the VA has AL Amyloidosis linked to agent orange exposure. David didn't go to Vietnam, but did spend 24 hours on a C-123 (the planes used to dump the stuff) traveling from Japan to Hawaii. Yep, it took 24 hours on a prop plane. He remembers being very cold (him and the pilot & co-pilot) in the cavernous hold of this converted troup transport plane.
This is so different for us...we had planned to "age in place" between traveling with no medications. Ha! Never can tell what life will bring.
We are pretty much sequestered.
Best wishes & stay well,
JoAnn
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