Author Archive for: DaveDias

Today, we ran into Cathy Schroeder @ UCSF.  Cathy is a Mantel Cell Lymphoma survivor and just returned from a vacation trip to Peru…!!!  Her stem cell transplant was in August 2007.  We met her @ UCSF when Irene was undergoing her stem cell transplant for Primary Amyloidosis in June 2007

Dr. Lloyd Damon, Irene’s Oncologist, is all smiles as Irene defies the odds and continues in remission from Primary Amyloidosis.

Thanks for caring,
Dave

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7 p.m.

It’s MONDAY…the most challenging dialysis day of the week.  The nausea is RAGING…and it’s off the 1-10 scale this evening.

Candidly, it’s really difficult to standby and watch this degree of suffering…especially when most people see her on non-dialysis days and wonder what the fuss is all about because she lives above her circumstances, keeps a smile on her face and successfully masks the ongoing waves of nausea.  Irene really does have, in many people’s view, an invisible disability, even though she has kidney dialysis 3 days a week.

My virtual friend, Wayne Connell, addresses this chronic matter with his good work at Invisible Disabilities.

Hopefully Irene will continue with her routine…which is to recover by tomorrow morning, after tossing and turning through the night like a fish out of water because of the nausea and insomnia, another symptom of kidney failure.

Our colossal and unrelenting enemy: Primary Amyloidosis…the cause of which Irene has been on this ruthless journey for 4 1/2 + years.

Thanks for caring,
Dave

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8.30 pm

Thanks for checking in.

Yesterday after dialysis, Irene’s nausea was literally ‘off the chart”…her words, not mine.

We use the 1-10 scale so I can better understand where the nausea “surf” is…it’s always present…it’s just that the surf is up…or managed.  So, after she was a “fish out of water” all night trying to find that comfortable position, she bounced back today and the nausea hovered betwen a 4 and 5.

So, she had a reasonably good day and keeps on smiling…

…amazing is all I can say…

Thanks for caring,
Dave

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