something else

I guess I have been letting this sit in the back of my mind and trying to leave it in denial, but I guess I have to face this. At my last rheumy appt. they mentioned transplant.... They think it would be good to start the preparations to get on the list. I didn't want to think it was this bad, and the treatment would make everything okay. I'm not even bad enough to have to be on oxygen, so I never thought they would mention transplant so soon, I knew it was going to come around eventually. I will wait and see what my respirologist says and what he recommends. They want to do some more tests and see if the cyclophosphimide has made any improvement, but I can't be on it indefinitely, no more than a year. It feels like a death sentence, I know in my head that it isn't but you can't tell your heart that. I am slowly mentioning things to my husband to get him used to the idea that we may not have as much time as we planned and that I expect him to go on and have a good life. As much reasearch as I 've done I know that I may only have 10 - 15 years....that's if everything goes well. I don't want to be a downer and I don't want to be pessimistic, but I don't want to shy away from the reality either. How do you maintain a balance?

Replies

oxfordns
oxfordns

Life has its dark moments, doesn\'tt it. Sigh.I wish I had some words of wisdom....all I CAN say is that I think I understand your feelings of `what`s down the road`?....Live life the best you can..........
deleted_user
deleted_user

im not sure how to maintain balance because to be honest with you im still learning myself. i think it is a good idea how you are dealing with your husband a little info at a time because you never know what the future may hold something for the better if that makes sense. i just want you to know that i will contiue to keep you and your family in my prayers.
deleted_user
deleted_user

I think that you are doing a very good job at maintaining a balance, but how do we ever know? I\'m so sorry to hear of that news, definately some to make you think and take stock. You are strong, wise, and full of grace and dignity. Not many would take news as this as well as you. I know what you mean about the heart and head thing. It seems as if mine if fighting with each other all the time. Try to stay positive, then you do some more research. oxfordns is right, there are no words of wisdom to offer. Know that I\'m thinking of you and sending positive energy. Love, Peace and Courage, Kim