4th of July EVE…

Last year we spent an incredible 4th of July holiday with Gary and Cathy Daichendt at their lovely home in Laguna Beach.  Right at dusk, we watched an incredible fireworks display from a small watercraft just offshore.  This year we celebrate in San Francisco…not exactly our first choice, but we’re where we are supposed to be at this appointed time…

My mom and dad came to UCSF today… and I was even able to sneak them in for a very quick visit with Irene… the first in a long time that she has been able to have visitors…

Irene had 3 hours of dialysis today; they took off a whopping 4 liters of fluid…

She is lucid and smiling…I enjoy seeing her feeling so much better…Dr. Stephen Gluck was tending to Irene in her room this morning;  we’re forever grateful to him for first receiving Irene during the onset of this disease before it was even diagnosed.

We’re also eternally grateful to Dr. Alan Buchwald, who was the “Fairy GodFather” as Irene calls him, because he was the first doctor at Dominican Hospital in Santa Cruz to diagnose the Nephrotic Syndrome, the symptoms leading to the Primary Amyloidosis diagnosis.  Dr. Buchwald went beyond the call of duty doing work during his “off hours” and day off to assist and coach us as well as make the initial call to Dr. Gluck at UCSF.  What amazing commitment to people…they care so deeply…!!!

Janet Leiva, RN, UCSF

Obviously still very fragile, the next step for Irene is to consume some liquids beyond water (i.e. broth or herbal tea) and not feel nauseated or experience other side effects.  Please pray to that end…

Many of you are still donating blood and platelets; the need is still very significant and we thank you so much!!!!

As we celebrate our country’s freedom tomorrow, our family is grateful for the community surrounding us and thinking of us in so many wonderful ways…may God bless YOU this 4th of July holiday!!!

Dave

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We recently received this email from Kevin Wang regarding Irene’s skin condition:

Dear Mr Dias-

Hope this email finds you well.  Dr Fox and I apologize for the delay in getting this to you…I wanted to send you a couple of quick notes on asteatotic eczema, which is what we thought Irene had all along, with perhaps a small contribution from a drug reaction.

Asteatotic eczema is a very common condition characterized by itchy, dry, cracked, and polygonally fissured skin with irregular scaling.  It most commonly occurs on the shins of middle-aged to elderly persons, but it may occur on the hands and the trunk.  The eruption can be generalized or localized (as is in Irene’s case), and is often caused by changes secondary to age, dehydrated skin, and/or malnutrition (and that’s why we see a lot in hospitalized patients or in patients who have trouble with nutritional absorption through their gastrointestinal tract).  The treatment of choice is with mid potency topical steroids to calm down the inflammation, then with aggressive use of moisturization agents.  As you already have found out, her skin is now much much improved on this regimen.

With respect to a possible allergy to a medication, I want to emphasize that the type of drug reaction that she may have had (as evidenced by a skin rash) is NOT life-threatening, and has in fact been resolving over the past 10 days.  It is not uncommon for patients receiving so many medications at once to have a drug allergy, and we have discussed it with her team and they have discontinued the likely culprits.  We don’t expect her to have another flare of the rash.

Hope this is helpful! please feel free to let us know if you have other questions or concerns—the best way is to direct the questions to the CRI team and they can call us!

best wishes
Kevin

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