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Re: Not  feeling as optimistic

From: schmidt5@erols.com

Date: 10/1/2003

Time: 2:19:58 PM

Remote Name: 66.44.60.36

Comments

Hi Laura,

When John went through his treatment he was not put into isolation. He went with virtually no white count for three+ months. You take many precautions….lots of hand washing, daily showers, wearing a face mask when outside of his hospital room or the home, don’t let visitors come if they are ill or have been around someone who was, if anyone has had a live vaccine…keep them away for 30 days, eat fully cooked meat products, wash all fruits and vegy’s with apple cider vinegar and filter water, followed by a rinse with filter water, used an air filter in the bedroom and again, just extra precautions. The nasal spray version of the flu vaccine this year has the live virus from what I’ve heard…so be sure to get the shot. They recommend caregivers get one….I did not get one last year and am not planning to get one this year. I may rethink that decision.

Bottom line, your kids should be able to visit with their Dad.

Also, our DR. at Hopkins told us that most Aplastic Anemias usually have some PNH. John’s was 1%. But we met others who were as high as 50%. The treatment took care of the PNH. They check for it every time we go back to Hopkins. John did the high dose cytoxan, not ATG, but from everything I’ve read, the experiences are similar after the administration of the ATG/Cytoxan. Everyone deals with little or no counts and needs to be supported during those times. And yes, some have an easier time than others. We planned for the worse, expected the best and ended up somewhere in between.

You really need to get a final diagnosis so you can focus on just one disease instead of many possibilities. We went through the same process until we got the bone marrow biopsy results (had to do it twice). Until then… It may be this or this or that. And of course, I had to research all of them! Overwhelming.

One last note…..the hospital should have a social worker that can work with you on the financial stuff. And filing for SSD may be an option for you.

Good luck,

Marlene


Last changed: September 24, 2006