The news from Mayo is mainly good. My Lambda Light Chain numbers are actually in the normal range for a second consecutive month. Yes! And the lambda/gamma ratio also is in the normal range for a second straight month. Again, yes! That’s the good news. The bad news is that Doctor Hayman hasn’t changed my prognosis. There hasn’t been any improvement in heart function, and while there may be some improvement, it may very well be that what I have is what I will have to live with. That is going strictly by the odds. Which she says if anyone can beat, she thinks it is me. I certainly intend to. Two years just isn’t enough to do what I need to do. And even five, which she isn’t willing to bet on, isn’t enough. Don’t talk to me about no stinking odds, gringo. I’ve got promises to keep. (With apologies to Eli Wallach.) As far as the heart function goes, I had one heart doctor put me on restrictions; no heavier that five pound dumbbells and so forth. That seems to me to just be holding on in place, and I can’t afford to do that. I have to fight back. I have to get back to marching for the horizon. So I am ditching the doctor’s advice. Very slowly (I don’t want to fall over from a heart attack) I will start building with again. I look forward to the day I can tell the Mayo people that I am benching 100-pound dumbbells again. I won’t push too hard, but I won’t stand still either. I can see the horizon. I want to see what’s on the other side.
Now, there is a gathering of Amyloidosis patients and care givers at the Mayo in Rochester in July. Unfortunately, I won’t be able to be there, as I would have to turn around a week later and make the trip back to Rochester for my three-month checkup. That is a tiring trip, frankly, and I don’t think I can face it twice in the space of ten days.
Here is the contact info:
www.amyloidosissupport.com
Amyloidosis patients care givers relatives and friends—Midwest—East—West-South—No Geographical Limit—Must RSVP
Amyloidosis Support Groups Meeting
Mayo/Rochester Minnesota
July 14th—Meeting
July 15th—Tour
Guest Speaker—Dr. Morie Gertz and others to be announced later (I hope)
RSVP: Sandy Williams s.williams@safetyspeedycut.com
Muriel Finkel muriel@finkelsupply.com
There are other meetings scheduled. I think the next after Rochester is in Atlanta. You can check at Amyloidosis.com to learn more.
Dr. Gertz is THE guru when it comes to amyloidosis research. He’s the man!
If you are viewing this on github.io, you can see that this site is open source. Please do not try to improve this page. It is auto-generated by a python script. If you have suggestions for improvements, please start a discussion on the github repo or the Discord.