Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Nita, , " theman " and the others I have missed while I was out, Welcome to the group and sorry you have to be here - I know...Maureen was more eloquent, but she always is :-). I'm 33, don't have kids so I cannot relate to the undoubtedly scary and uncertain future of your children. There are many parents with children of all ages that will guide you along the way. As you have probably found out, this disease does not have a comforting outlook but there are those that have lived 30+ years without requiring a tx (transplant) while leading productive lives. The most common symptoms are fatigue and itching. After that, it's kind of hit or miss with what you/they experience. You have found a wonderful place for insight, knowledge (very important when talking to your dr.), respect, kindness and love. It would be hard to define us as a family, which I often do, but we have the same inherent characteristics. We laugh together, cry - not me, I'm a man :-) - , and sometimes say things that upsets someone. All part of growing together and helping each other out during difficult times. So hang in there, think positive and arm yourself with as much knowledge as you can. You are the advocate for yourself or child's health from here on out. Darin Quote Link to comment Share on other sites More sharing options...
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