View Single Post
  #10  
Old Thu Feb 11, 2010, 04:46 PM
Robi1Knobi Robi1Knobi is offline
Member
 
Join Date: Mar 2007
Location: Austin, Texas USA
Posts: 98
what to do during watch and wait...

I feel so strongly that if you are "watch and wait", you should try to help yourself as much as possible. No one will ever care as much about yourself....as yourself. You have to be your own advocate, and don't be afraid to ask questions. Most docs don't know the answers, so you have to search for them, because so much is unknown about our disease...I found out something was "wrong" with me in 2001, and since then have seen many specialists, had alot of blood drawn, and multiple bmb's. I finally got diagnosed in 2007 and that doc was ready to do a transplant, until I did research (on my own) and got a 2nd opinion from Dr. Young at NIH. He told me I didn't need a transplant, because he said I had mild AA, not moderate-severe like the other doctor. I made alot of changes to help myself, I'm sure some of my friends thought I was crazy. I changed to all biodegradeable house cleaning products, quit using plastic to heat food in, started doing nutritional research, MOVED from Houston to Austin, surrounded myself with positive people, & tried to learn how to be more Type b. You have to find ways to reduce stress in your life...so you don't get sicker.
__________________
Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
Reply With Quote