I am writing to let you know what has been going on with us. As you know, over eight years ago, Steve’s little sister, Nancy gave Steve part of her liver to relieve him of the pain, intense itching and basically just feeling like crap. Without Nancy’s selfless gift, Steve would not have been here to give us eight more years of memories.
PSC is an auto-immune disease and it can not be cured. There is a less than 20% chance that the PSC will show its ugliness again. Unfortunately, it has come back with a vengeance in Steve.
He and I have known something was not quite right about a year ago. For those of you who have seen him recently can see that he has lost about 50 pounds since last August. He is much weaker than the last time and his coloring goes in and out. But no matter how he looks, he just feels like crap.
As of last week, he has been placed on the waiting list for a new liver at both Georgetown and Johns Hopkins. This is a new situation we are in. The first time, “We” picked what we (the doctors, Steve and Nancy) felt was a good time. He was sick, but he was physically strong and emotionally prepared. Since he has already had a partial donation, he cannot do a living donor again. So now we wait…..Every time the phone rings, we get a little ping in the stomach. YES we want to receive that phone call, but are we ready (physically and emotionally) for it when we answer THAT call???
All five of us are at different stages of acceptance right now. Like with everything, we all have our good days and our bad days. But we all just want Steve to feel like the smart, happy and fun Dad that we were blessed with for eight extra years.
We are not in need of anything at this time. That is, except your positive thoughts and prayers. I will let you know when we do need help!!!
Thanks for all of your love and care. That is how we made it thru before and I am sure that is what will get us thru it once again!!